The POTScast: Recent Episodes
Standing Up to POTS, Inc.
Learn about Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS) and more by joining us each week for a new episode. If you are living with POTS, MCAS or other chronic illnesses, you are not alone! Our goal is to raise awareness, nurture community, and empower patients with information and practical skills for living better with this chronic invisible illness.
Each month, we feature episodes with top POTS physicians as well as POTS patients. Because many POTS patients are eventually diagnosed with MCAS, the first Tuesday of every month we feature a new series called Mast Cell Matters, in which top MCAS practitioners share their experiences in better treating patients. You can learn more by listening to our groundbreaking POTScast anywhere, anytime. Visit our website at www.standinguptopots.org and follow our social media accounts @standinguptopots.
In this 3rd Q&A session with the amazing Dr. Dempsey she goes deep on infections as a trigger for MCAS: How they're transmitted, symptoms, testing, treatment, and expectations for recovery. This is a not-to-be-missed episode since -- as we learn in this episode -- nearly everyone has likely had exposure to the types of infection that can be at play.
More information about Dr. Tania Dempsey and her practice can be found at https://drtaniadempsey.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Sephora got POTS while becoming an occupational therapist and suffered greatly through her graduate program, but now she reports having no more limitations than her friends and has founded the non-profit support organization that she wishes had been there for her. It has helped over 600 girls internationally who live with chronic illness.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Katinka is a chiropractor in Arkansas dedicated to the treatment of neurological pain, a particularly stubborn type of chronic pain often seen in POTS, EDS, fibromyalgia, and CRPS. Dr. K leaves no stone unturned to try to help these patients and in this episode she discusses her approach to treating these tough pain conditions. Dr. K's website is here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This is a not-to-be-missed episode between two incredible physicians: Dr. Jill is a highly sought-after leader in functional medicine and a survivor of cancer/crohne's/MCAS. She and Dr. Dempsey compare approaches to treating MCAS, discuss Dr. Jill's new book and film, and describe some lesser-known treatment strategies like methylene blue with red light therapy.
Connect with Dr. Jill at the links below.
Instagram:
/ drjillcarnahan Facebook: / flatironfunctionalmedicine New Book: Readunexpected.comDocumentary: doctorpatientfilm.comDr. Jill's Website: https://www.jillcarnahan.com/More information about Dr. Tania Dempsey and her practice can be found at https://drtaniadempsey.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Antonia's fast-paced life as a video/TV producer got a shock starting 10 days after her first COVID shot, but don't miss this episode to hear how she is still producing, finding silver linings, and having some hopeful experiences with steroids. See Antonia's latest show here:
https://www.aetv.com/shows/find-my-country-house
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Erik Reis is a Doctor of Chiropractic Medicine, Board-Certified Chiropractic Neurologist, Certified Brain Injury Specialist, past brain injury patient himself, and founder of The Neural Connection in Minneapolis, a clinic that focuses on treating complex neurological and orthopedic disorders that range from traumatic brain injuries, dysautonomia/POTS, concussions, and more. Here he discusses how concussions can cause dysautonomia and what can be done to help heal the brain. He's a wealth of knowledge, and offers more information online at his website here and his extensive blog here.
Dr. Reis's Social Media Links:
LinkTreeFacebook
InstagramTikTokYou can read the transcript for this episode here: https://tinyurl.com/potscast216
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
What are intensive hospital-based treatment programs and how do POTS patients rate their effectiveness? Dr. Cathy Pederson reports on her recent publication, showing these programs are not for everyone. Dr. Pederson's article can be found here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Kait lives on a farm in Michigan and has embraced exercise as a way of life for herself and for her clients. As a personal trainer and coach, Kait has enjoyed helping many people find wellness, including POTS patients who didn't think they could exercise. Kait's website -- KO Wellness -- which includes a program for POTS patients, can be found here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Dempsey interviews breast surgeon Dr. Eva Nagy about her important new findings just published about evidence of mast cell activation in Breast Implant Illness. Dr. Nagy is the world's leading surgeon for explant surgery and previously covered Breast Implant illness in episode 184.
Dr. Nagy's website is here and her new publication is here.
Dr. Dempseys website can be found here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Laura has been described as a 'gregarious chameleon' and a force to be reckoned with. This mother of 2 estimates she's about 80% improved since her worst days, but she's had to work for it. Hear her story in this episode.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Nobody answers your MCAS questions as rapid-fire as Dr. Dempsey! She's back to answer listener questions, addressing the topics of anaphylaxis, Epi-Pens, difficult blood draws, itching, what to do when otherwise healthy or important activities cause flares, and so much more.
More information about Dr. Tania Dempsey can be found at https://drtaniadempsey.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Lexi is a busy mother of 3, a pediatric nurse, and started feeling POTSy while standing in lines at military school. Now she's a wealth of information and tips for dealing with medical situations.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Kelly McCann is a leading educator on MCAS and related complex disease, with her online seminars and an approach that combines functional, integrative and environmental medicine. Drs Dempsey and McCann have a far-reaching conversation about MCAS strategies and factors ranging from mindset to muscle testing to genetic predisposition for breaking down fibrinogen blood clots.
More information about Dr. McCann's practice can be found at https://thespringcenter.com/
More information about Dr. Tania Dempsey can be found at https://drtaniadempsey.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Laura and Sharon became great friends while they supported one another through dysautonomia and related conditions. Between Laura's writing experience, Sharon's nursing career, and their joint ability to find the humor in every situation, they decided to help others by writing The Dysautonomia Diary: Essays and Tips for Enjoying Life Despite Chronic Illness. Their book has a foreword by Dr. Blair Grubb and is available here on Amazon.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Neil Nathan is the leading expert on mold and mycotoxin illness, and in this episode he and Dr. Tania Dempsey discuss how mold can cause chronic illness and how to treat it. They also discuss Dr. Nathan's new book, The Sensitive Patient's Healing Guide, available here from Amazon. Dr. Nathan's other books and resources, plus information about working him, can be found at https://neilnathanmd.com/.
More information about Dr. Tania Dempsey can be found at https://drtaniadempsey.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Brianne Dressen founded React19 to help people struggling with Long COVID and COVID vaccine injuries after being injured herself in a COVID19 vaccine trial, and learning the hard way that there was not a resource for adequate answers, treatment, financial or social support, or representation. Now she oversees 100 volunteers who have created a provider network, are funding and conducting research, are lobbying congress to address inadequacies of the compensation programs, are fighting court cases, and giving out grants to pay for medical bills of select patients. Learn more about Brianne's science-backed work to help patients at React19.org.
If you have been injured yourself, you can participate in their IRB approved survey here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Tania Dempsey shares her passion (and some tips) for bodybuilding, because she has been nominated to be on the cover of Muscle and Fitness Hers magazine! If she is voted to be on the cover, it will raise awareness of complex conditions like POTS/MCAS/hypermobility spectrum disorder, AND Dr. Dempsey would donate the $20,000 prize to the documentary in progress about the Triad. You can vote here (and see how strong she is) through Thursday, May 16th, 2024.
Dr. Julie Hubbard Maamari is a Perioperative Clinical Pharmacy Specialist who helps patients before, during and after surgery by making sure they get the best medications for their needs. She has helped many complex patients, including those with POTS, MCAS and other hypersensitive or allergic conditions, and she has authored peer-reviewed articles. Dr. Maamari discusses what patients and their doctors can do to prevent mast cell reactions and have the safest, most comfortable outcomes.
The free patient guide by The Mast Cell Disease Society, with worksheets for emergency room response plan, list of medications to favor or avoid with MCAS, and surgical medication plan can be found here.
Dr. Hubbard Maamari's published article on perioperative consideration in patients with MCAS can be found here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In this episode we check in on Maddie from episode 83, and hear how she is doing, including how she regained the ability to walk again!
You can read the transcript for this episode here: https://tinyurl.com/potscast204
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Sometimes we have to laugh so we don't cry. In this episode, cartoonists and married couple Mike and Jill Brook describe what made them create DoodleThru.com, how it helped them cope, and remark at the endless supply of absurdities that are available to chronic illness humorists.
You can see their cartoons at https://doodlethru.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Theoharides is among the world's top mast cell researchers and speaks with Dr. Dempsey about his recent article reviewing how mast cells may drive dysautonomia and vice verse. They also cover a range of topics from mast cells' diversity to their role in autism, most effective mast cell stabilizers and much more. This episode is packed with advanced mast cell information.
Dr. Theoharides has a website here and his supplements can be found here.
You can learn more about Dr. Dempsey and her practice here.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In this episode we meet Allie, a student at Purdue University who, since getting POTS, has started introducing herself to one new stranger per day. How cool is that?!
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Leticia Soares is a research biologist who, before COVID, focused on infectious disease in birds. Now she serves on the leadership team of the Patient-Led Research Collective, conducting and publishing research to help improve treatment for people with Long COVID. Dr. Soares recently published a review article about female reproductive health issues associated with long COVID, ME/CFS, POTS, hEDS, and in this episode she discusses the main findings, challenges, some tips for fellow patients, and future research priorities.
You can follow Dr. Soares at @leticiasaurus on X.
You can read the transcript for this episode here: https://tinyurl.com/potscast200
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Dempsey answers questions about MCAS and depression/anxiety/fatigue/brain fog; physical triggers; Kounis Syndrome; whether it's worth it to allow "small" flares in the name of pizza or other small joys; treatments such as stenting for venous compression; how long to try each antihistamine; and much more.
More information about Dr. Tania Dempsey can be found at https://drtaniadempsey.com/.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Arianna was an athlete until POTS and has now developed a large following as a social media influencer. She's sharing her POTS journey with her audience, too! You can follow her here on TikTok or follow her here on Instagram.
You can read the transcript for this episode here: https://tinyurl.com/potscast198
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. David Kaufman is renowned for working with the most complex patients and for his podcast on Patreon, Unraveled: Understanding Medical Complexity. He and Dr. Dempsey discuss the role of MCAS in ME/CFS and other complex disorders and how he starts unraveling these complex clusters of conditions. You can learn more about Dr. Kaufman and his practice here.
You can learn more about Dr. Dempsey and her practice here.
You can read the transcript for this episode here: https://tinyurl.com/potscast197
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jolie was first featured in episode 160, and she's back to talk about how she's doing, how she successfully manages her POTS, and some big news: She was chosen to be Miss Chattanooga, TN! In this role she is helping raise awareness of POTS and in the next few days (March, 2024) she'll be competing in the Miss Tennesee Pageant. Thanks to Jolie for using her platform and growing notoriety to help our community!
You can find Jolie on TikTok or Instagram at @JolieMayes.
You can read the transcript of this episode here: https://tinyurl.com/potscast196
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Kelley from Maryland, a driven student who loves to read, plays the guitar and has plans to pursue neuroscience so she can study the intersection between the brain, one's mindset and POTS.
You can read the transcript for this episode here: http://tinyurl.com/potscast195
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
POTScast listeners took a survey on podcasts and social support. Here are the results - podcasts can help individuals feel less socially isolated and provide them with informational and emotional support. Parasocial relationships between podcast listeners and hosts are also important.
You can read the transcript for this episode here: http://tinyurl.com/potscast194
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Learn about the psychological experiences of POTS patients in this episode with Dr. Alissa Sheldon. Understand how to trust your symptoms and navigate through life despite challenges.
You can read the transcript for this episode here: http://tinyurl.com/potscast193
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Erin is working on her Master's degree in English, and loves to write. She's written stories about her journey with both lupus and POTS, which started in her late teens and early 20s, but her first love is fiction.
You can find her stories at https://vocal.media/fiction/waiting-room-lv3wu40jdv and https://www.artwifemag.com/short-stories/chinchilly
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Dempsey interviews pediatric cardiologist Dr. Jeffrey Boris about the Triad (MCAS, POTS and hypermobility syndromes) in his pediatric population. As an avid researcher and data analyst, Dr. Boris is always a wealth of knowledge on latest findings and yet-unpublished trends and hypotheses. The doctors also exchange interesting observations about MCAS and cholesterol, PCOS, and much more.
You can learn more about Dr. Boris and his practice here.
You can learn more about Dr. Dempsey and her practice here.
You can read the transcript for this episode here: http://tinyurl.com/potscast191
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Attention POTS patients and those who care about them: Ever wondered what exactly is happening in your body when you experience common POTS symptoms like fainting, nausea, dizziness or brain fog? Tune in to this episode with Dr. Cathy Pederson to unpack the potential causes of these symptoms.
You can read the transcript for this episode here: http://tinyurl.com/potscast190
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This is a conversation between Jill Brook and Megan Barnett discussing the relationship between nutrition, gut health, and complex health conditions like POTS and mast cell disorders. They delve into topics like food sensitivities, the importance of micronutrients, and the role of functional medicine in managing these conditions.
Megan's website is: https://bioloungepdx.com
You can read the transcript for this episode here: http://tinyurl.com/potscast189
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Erica really can't remember life without POTS symptoms and anxiety was blamed for many years. She currently attends school and lives bicoastally as she pursues a career as an actress and dancer. Her diagnosis brought relief, and learning how to control her symptoms have helped her follow her dreams.
You can read the transcript for this episode here: http://tinyurl.com/potscast188
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Anjali Agarwal - consulting physiotherapist trained in UK, located in India, and consulting via telemed around the world - is a wealth of information on POTS and related conditions, describing how "everything is connected", which also presents many treatment opportunities. She shares numerous lifestyle strategies to manage POTS/dysautonomia, MCAS, hypermobility and related conditions, and she also shares her international perspective. You can follow Dr. Anjali on Twitter, Instagram, or Facebook.
You can read the transcript for this episode here: http://tinyurl.com/potscast187
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of dysautonomia/POTS, MCAS and hypermobility spectrum disorders. We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is going so far and how we can all help support the film. This is a crossover episode with Bendy Bodies with Hypermobility MD, Dr. Linda Bluestein. You can learn more about the documentary at MCASfund.org.
Chapters
00:00 Introduction
00:37 Creating Awareness and Increasing Treatment Options
03:09 The Birth of the Documentary Project
05:20 Filming in New York
07:19 Filming in St. Louis
10:32 The Motivation to Work with Complex Patients
15:49 The Journey of Recognizing MCAS
17:34 The Impact of MCAS Treatment
21:00 Personal Experiences and Incorporating MCAS Treatment
22:42 The Need for an Educational Library
25:29 The Challenge of Condensing Information
26:21 Describing MCAS in Sound Bites
31:10 The Importance of Raising Awareness
34:42 Growth and Development Abnormalities in MCAS
40:03 Main Points about Hypermobility Syndromes and Dysautonomia
44:48 Partnership with LDN Research Trust
51:47 Final Words and Call for Support
54:26 Recognition and Treatment of Unrecognized Patients
55:44 Importance of Learning and Trying
56:13 Gratitude for Dedicated Doctors
56:47 Closing Remarks and Resources
You can learn more about the physicians in this episode at:
https://aimcenterpm.com/ for Dr. Tania Dempsey and Dr. Lawrence Afrin
https://www.gidoctor.net/leonard-weinstock-md for Dr. Leonard Weinstock
https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md for Dr. Laurence Kinsella
https://www.hypermobilitymd.com/ for Dr. Linda Bluestein
You can read the transcript for this episode here: http://tinyurl.com/potscast186
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Despite Leah being largely bedbound, Tim and Leah's relationship is as strong as ever. How do they balance illness, household chores, and raising their children? Find out in this heartwarming episode.
You can read the transcript for this episode here: http://tinyurl.com/potscast185
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Tania Dempsey interviews Dr. Eva Nagy, a breast surgeon experienced in all sorts of breast surgeries, who has developed special interest and skill in treating breast implant illness (BII), which she believes can be related to mast cell activation syndrome (MCAS). Dr. Nagy describes BII, how she removes problem implants, and the effects this can have on a wide range of symptoms.
You can learn more about Dr. Nagy and her practice here.
You can read the transcript for this episode here: http://tinyurl.com/potscast184
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In this episode, Nutritionist Jill Brook reviews the research findings on nutrient deficiencies in POTS, shares some tips, and directs listeners to a great resource for finding which lab tests are recommended by our Medical Advisory Board to determine whether nutrient imbalances may be a factor for you. With Jill’s husband as this week’s interviewer, we also learn about some nutrient experiments and misadventures in her own POTS journey.
You can read the transcript for this episode here: http://tinyurl.com/potscast183
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Quinton loves to work out and research Long COVID. About two weeks after recovering from a mild COVID infection, he developed POTS and found himself nearly bedridden. He has slowly worked his way back toward being functional, although he still has significant limitations.
You can read the transcript for this episode here: http://tinyurl.com/potscast182
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Alexis Cutchins wrote a comprehensive review of POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about promoting good blood flow that might decrease other POTS symptoms.
Dr. Cutchin's review paper on POTS:https://www.uscjournal.com/articles/narrative-review-postural-orthostatic-tachycardia-syndrome-associated-conditions-and
You can read the transcript for this episode here: https://tinyurl.com/potscast181
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Emily was working as a medical assistant when she developed POTS. While she was aware of POTS, receiving a proper diagnosis still took 7 or 8 months. Many practitioners were dismissive of her symptoms, leading to a delay in treatment.
You can read the transcript for this episode here: https://tinyurl.com/potscast180
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Leah's life changed after her family got sick in December 2019. They rebounded in a couple of weeks, but she did not. She was diagnosed with POTS quickly, but remains largely bedbound and has had to shift her perspective to use her energy wisely for her family.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Settle is a psychiatrist who believes that mast cell activation is responsible for some symptoms of anxiety, depression, bipolar disorder type II and others. She treats MCAS as a way to stabilize both mast cells and their emotional state.
You can read the transcript for this episode here: https://tinyurl.com/potscast178
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Perceived burdensomeness, feeling like a burden to friends and family, is common in POTS patients. This feeling can be a predictor of suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast177
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Hanna had a 15-year journey to her POTS diagnosis after fainting episodes that started in her teens. An avid athlete, she has completed a triathlon and climbed mountains in her less symptomatic days.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Lewan, a POTS patient with a CSF leak, helps many patients learn how to listen to their bodies and slowly progress in their physical therapy exercises. An understanding practitioner can make all the difference in assisting POTSies to live their best lives!
You can read the transcript for this episode here: https://tinyurl.com/potscast175
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Resilience is a nuanced topic. How do you build it? Is it always a compliment if someone says you are resilient? How can we better support our chronic illness community? Dr. Gorman-Ezell discusses it all!
You can read the transcript for this episode here: https://tinyurl.com/potscast174
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Kaylee is an ER nurse in Phoenix and shares her own story along with tips on how to get the most out of an ER visit, like telling the triage nurse everything gets you proper care faster. She has POTS, EDS, and MCAS and is delightful!
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
MCAS expert Dr. Bluestein is an anesthesiologist and pain specialist focusing on hypermobility and its associated pain syndromes. Having EDS and her own pain, she discusses the use of opioids, ketamine, pain programs in this population, and much more!
You can read the transcript for this episode here: https://tinyurl.com/potscast172
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Attorney Drew Downing is prosecuting a case against Merck on behalf of people who were vaccine-injured by the HPV vaccine Gardasil. He is knowledgeable about POTS and the legal system, providing insights that might help some POTS patients to gain compensation for their injuries.
For more information, visit: https://www.wisnerbaum.com/prescription-drugs/gardasil-lawsuit/ is the law firm mentioned in LA. Drew's firm is: https://www.nationalvaccineinjurylawyer.com/
You can read the transcript for this episode here: https://tinyurl.com/potscast171
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
What do POTS, ecstasy, dehydration and thirst have in common? This is a fascinating episode with Dr. Harriett Carroll, who developed POTS after the COVID vaccine. She now uses scientific expertise to help others through chronic invisible illness.
Her website: http://www.lc-sc.co.uk/
Twitter: @angryhacademic
You can read the transcript for this episode here: https://tinyurl.com/potscast170
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
What a fabulous episode of the POTScast taped before our in-person 5K/2K. POTS patients and their loved ones spoke from their hearts to give an authentic glimpse of the ups and downs of living with a chronic illness like POTS. We are proud to serve this community, and touched by their stories.
You can read the transcript for this episode here: https://tinyurl.com/potscast169
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Karissa Arca works at the intersection of autonomic and headache disorders at Mayo Clinic Arizona. She is a wealth of information and also an advocate for patients. Join us to learn more about headache management for POTS patients.
You can read the transcript for this episode here: https://tinyurl.com/potscast168
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In this episode, we cover POTS demographics, where sodium goes in the body, off-label medications, why meds stop working, and much more. Thanks to all who submitted questions!
The papers discussed in this episode for medications and dosages:
Fedorowski paper 2018: https://onlinelibrary.wiley.com/doi/full/10.1111/joim.12852
Raj paper 2022: https://www.cmaj.ca/content/194/10/E378
You can read the transcript for this episode here: https://tinyurl.com/potscast167
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Lauren was a college tennis player and was always on the run when she developed COVID, Long COVID and POTS. At 23, her life is different now, and she continues to search for her new normal.
You can read the transcript for this episode here: https://tinyurl.com/potscast166
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Weinstock and Dr. Dempsey are spearheading the creation of a documentary about MCAS, POTS, and EDS. Still in the planning stages, this documentary intends to educate medical professionals and the general public. We hope that it will help raise awareness!
Link to the LDN Research Trust:https://ldnresearchtrust.org/mast-cell-activation-syndrome-documentary
You can read the transcript for this episode here: https://tinyurl.com/potscast165
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Vaccine injury can occur after COVID injections, likely triggered by the COVID spike protein. Many people develop POTS or have worsening symptoms. Unfortunately, this can transform a healthy individual into a significant chronic illness that may impact mental health.
Websites discussed in this episode: https://www.awarenessforpotsies.org and https://www.hrsa.gov/cicp
You can read the transcript for this episode here: https://tinyurl.com/potscast164
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Several in her family have had mysterious symptoms for years, but Courtney was the first to be diagnosed with POTS. She uses Chat GPT to help her write letters to practitioners and organize her medical records.
You can read the transcript for this episode here: https://tinyurl.com/potscast163
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In some cases, chronically ill people are mislabeled as having an eating disorder when gastroparesis or MCAS is causing their symptoms. In other cases, eating disorders can develop secondary to dietary restrictions to avoid flares, including restrictive diets. This is an interesting interview that discusses both scenarios and how to know when you might need help.
Krista's website:www.healingrootswellnesscenter.com
You can read the transcript for this episode here: https://tinyurl.com/potscast162
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Heart rate variability can be a good indicator of general health. A higher heart rate variability is preferable and shows a parasympathetic state. Learn how to control heart rate variability using biofeedback to perhaps decrease symptoms.
Their website:https://getlief.com
You can read the transcript for this episode here: https://tinyurl.com/potscast161
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jolie was quickly diagnosed after a fainting episode, largely due to the fact that her mom is a physician. While her life has changed, she looks for joy in the small things - walking her dog, making ramen, and doing isometric exercise.
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Treating MCAS, POTS, and Long COVID can be difficult, and physicians must attack from various angles to get patients feeling better. Dr. Maxwell walks us through his thinking and how MCAS is linked to POTS and Long COVID. This episode is a must-listen for patients and practitioners alike.
You can read the transcript for this episode here: http://tinyurl.com/potscast159
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Mikayla was quite the athlete before POTS, and still enjoys running when she can. She was diagnosed with POTS within a month of symptom onset, and is grateful for good healthcare during this journey.
You can read the transcript for this episode here: https://tinyurl.com/potscast158
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jessica suffered from a brain tumor at birth which caused seizures. It took several years to find a surgeon to remove the tumor. In her teen years, she slowly started to develop POTS symptoms. Despite her physical struggles, she loves to skateboard and hang out with friends.
You can read the transcript for this episode here: https://tinyurl.com/potscast157
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Katie was diagnosed with POTS last year after being diagnosed with EDS in 2014. She tries to stay cheerful, even when not feeling well, to be a good example for her children. She loves painting and cutting hair in her small Wyoming town.
You can read the transcript for this episode here: https://tinyurl.com/potscast156
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Alison's daughter was in college and a competitive horse jumper when she developed POTS. It was manageable at first, but worsened substantially after the COVID vaccine. After a variety of medications and other traditional approaches, functional medicine really helped her daughter take back her life.
You can read the transcript for this episode here: https://tinyurl.com/potscast155
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Thomas loves jiu jitsu, skateboarding, and surfing. He developed POTS in college, and really struggled with stamina. Slowly, he has worked both physically and mentally to get himself back in the game. Find out how in this episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast154
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Michael developed Long COVID at the beginning of the pandemic in 2020. He is fortunate to be back to 75% capacity, but recognizes the changes in his lifestyle and broader life as a result of his chronic illness. Listen to his journey through Long COVID physically, mentally, and emotionally in this episode.
You can read the transcript for this episode here: https://tinyurl.com/potscast153
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Autumnizhurr has been disabled since college, due to POTS and Wolff Parkinson White Syndrome. She has had several heart ablations to minimize her symptoms, although they caused other problems. She is a content creator, and loves gaming because in that world she is not different from others.
You can read the transcript for this episode here: https://tinyurl.com/potscast152
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Rebecca was living the dream when POTS hit - just out of college, living in a flat with friends, working as a nurse in the hospital - and forced her to move back home. Slowly, she improved after being properly diagnosed, and now has returned to nursing in a outpatient setting that requires less stamina than the hospital floor.
You can read the transcript for this episode here: https://tinyurl.com/potscast151
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This episode features a mother and daughter describing how POTS has impacted their daily life. Lyla has had medical issues for most of her life, but a bug bite seemed to really have exacerbated her symptoms. Lyla and her family work to push through the pain to live their best lives.
You can read the transcript for this episode here: https://tinyurl.com/potscast150
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jill and Dr. Cathy Pederson discuss what to do after you have exhausted practitioner recommendations. There are lots of ideas provided, as well as tips on how to evaluate each potential new treatment. Great episode for those of us holding onto hope of symptom improvement.
You can read the transcript for this episode here: https://tinyurl.com/potscast149
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Nicole's career as a news reporter in Anchorage, AK and Raleigh, NC was cut short when she developed POTS. While her symptoms have improved since that time, she is still not able to be upright enough to return to that career. Despite that, she pitched a story on POTS to the Today Show and was aired the following week. Thanks, Nicole, for helping to raise awareness about POTS!
Today Show POTS story: https://www.today.com/video/covid-19-linked-to-crippling-heart-condition-pots-158971973791
You can read the transcript for this episode here: https://tinyurl.com/potscast148
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
After issues with her own MCAS, Dr. Shanda Dorff started to investigate the impact of MCAS on people with a variety of gynecological issues like pelvic pain, heavy bleeding, etc. and during pregnancy. She has written a journal that allows patients to track the symptoms that doctors need to diagnose. Thanks, Dr. Dorff, for sharing with us!
You can read the transcript for this episode here: https://tinyurl.com/potscast147
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
The pandemic has provided a unique opportunity to study new onset POTS cases with a known trigger - COVID. The symptom similarities are striking between those with POTS and Long COVID in this Australian research study. A great listen!
You can read the transcript for this episode here: https://tinyurl.com/potscast146
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In retrospect, Leigh's daughter had symptoms since age 4, but her daughter's POTS wasn't diagnosed until she was a teenager. Leigh describes the struggle of the parent - worry, grief, questioning decisions, the helplessness that comes with navigating your child's chronic illness. It's a great episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast145
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Linda Nguyen is a gastroenterologist who sees patients with POTS, EDS, and ME/CFS. She explains gut motility issues, nausea, and how to best prepare for an appointment. Down to earth, practical explanations about complex GI problems.
You can read the transcript for this episode here: https://tinyurl.com/potscast144
If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Victoria is a busy college student who commutes to school on the train daily. She is a competitive cyclist, likes to run, and hopes to contribute to the POTS community by helping to develop or engineer pharmaceuticals.
You can read the transcript for this episode here: https://tinyurl.com/potscast143
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Drs. Ruhoy and Kaufman specialize in people that suffer from several chronic invisible illnesses. Thinking about them as a cluster and then breaking diagnosis and treatment down into pieces can help all physicians treat POTS, ME/CFS, and MCAS. They also regularly look for anatomical problems in their patients, which medication alone cannot fix.
Link to their podcast: https://www.patreon.com/posts/introduction-75440859
You can read the transcript for this episode here: https://tinyurl.com/potscast142
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Stephen's wife Becca developed POTS two years ago, and he shares the caregiver's perspective about POTS. As a young couple with a toddler, taking care of himself so that he can take care of his family is important. We are thrilled that he was willing to share his story and his perspective with us!
You can read the transcript for this episode here: https://tinyurl.com/potscast141
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Communication is important in any relationship, but is key when one partner is chronically ill. Understanding how each partner receives love is another important step in maximizing the impact for your partner while still conserving your energy. There are many practical tips for maintaining your relationship in this episode!
Want to learn your love language? Check out https://5lovelanguages.com/
You can read the transcript for this episode here: https://tinyurl.com/potscast140
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Becca has a fascinating and most unusual story about her POTS trigger - food poisoning from 1000 year eggs while on a mission trip in Hong Kong. She is currently pregnant, and feeling extra POTSie as a result. Regardless, she is optimistic and shares her story to help others.
You can read the transcript for this episode here: https://tinyurl.com/potscast139
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Melanie Hoppers has a unique perspective on POTS - she learned of it when her daughter became ill and now dedicates her medical career to patients with POTS, ME/CFS, MCAS and long COVID. Join us for this fascinating healthcare system episode from the patient and physician perspective.
You can read the transcript for this episode here: https://tinyurl.com/potscast138
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Noah Greenspan returns to the show to update us on long COVID patients. He also discusses recovery strategies for COVID, prevention of long COVID, and oxygen therapies that seem helpful anecdotally.
You can read the transcript for this episode here: https://tinyurl.com/potscast137
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Hannah fell after getting a vaccination, and this caused significant brain trauma. As a result, she developed both POTS and SIADH (syndrome of inappropriate antidiuretic hormone secretion). Despite this injury and dealing with ongoing health issues, she remains optimistic and lives each day to its fullest.
You can read the transcript for this episode here: https://tinyurl.com/potscast136
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Weinstock, a gastroenterologist who is a leading expert on MCAS, discusses mast cells in the context of the GI tract. Bloating, gas, SIBO, SIFO, and IBS are all discussed in this episode. In addition, he shares how he prescribes LDN for his patients. There is a ton of great information in this episode for patients and practitioners alike!
You can read the transcript for this episode here: https://tinyurl.com/potscast135
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jesse's journey through POTS was a little different. She was diagnosed fairly quickly, but it took years for her to find a doctor who gave her proper treatment. Her life is so much better today - a supportive partner, hobbies for the good and bad days, and a really optimistic attitude. Her story is inspiring!
You can read the transcript for this episode here: https://tinyurl.com/potscast134
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Plotnikoff practices holistic medicine, and thinks deeply about the role of healthcare for patients. He shares his views on honoring patients, considering alternative explanations, and the foundations necessary for good health in this episode.
You can read the transcript for this episode here: https://tinyurl.com/potscast133
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Katie developed POTS as a teen, and controlled it well enough to work as a respiratory therapist. A bout with COVID kicked her POTS to an entirely new level that she struggles to control. She has a unique perspective on how the healthcare system has changed with respect to POTS over time.
You can read the transcript for this episode here: https://tinyurl.com/potscast132
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Sofie is a delightful, articulate teen who is conducting a research project on the emotional intelligence of women with POTS. As you might guess, her early results show that it is off the charts! Join Sofie for an explanation about how the two might be connected.
You can read the transcript for this episode here: https://tinyurl.com/potscast131
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Join our own Jill Brook to think about 10 strategies to help you build your willpower for healthy eating and other healthy habits. Willpower can be learned with practice, so don't worry if it doesn't come naturally to you. Filled with humor and great information, this episode is a must listen!
You can read the transcript for this episode here: https://tinyurl.com/potscast130
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Afrin, a world expert in all things mast cell, talks in depth about issues with the first MCAS "consensus" statement and the need for a second MCAS consensus statement so that patients can be treated even if their lab tests don't show an elevation of tryptase levels. This opens the diagnostic door to many additional patients so that they can get the treatment that they need.
You can read the transcript for this episode here: https://tinyurl.com/potscast129
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Belle first realized that something was wrong at 16. Living in Greece didn't help, but upon return to Canada she started to find some answers. Her goal? Walk across her high school graduate stage. Find out how she was able to accomplish that while battling POTS.
You can read the transcript for this episode here: https://tinyurl.com/potscast128
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Fedorowski is one of the top POTS researchers in the world. This episode discusses plasma proteins that are different in POTS patients vs. controls. What might this mean? What is his new POTS symptom instrument? It's a great episode with a top POTS doc!
Link to the article discussed in this episode: https://www.nature.com/articles/s41598-022-24729-x
You can read the transcript for this episode here: https://tinyurl.com/potscast127
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jonathan shares his experience as a nurse who has been doing home infusions for patients needing IVIG. He talks about the highs and lows of his job with humor.
You can read the transcript for this episode here: https://tinyurl.com/potscast126
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Alls suffered a traumatic brain injury, had her heart stop, and developed POTS as a teenager. She speaks eloquently about her life experiences and how they have shaped her into the person she is today. This is a must listen episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast125
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Kate Morgan and her team just published a paper studying pregnancy in women with POTS. She found that having a baby is safe, as is taking certain medications during the pregnancy. If you have POTS and are considering getting pregnant, this is a must listen episode!
Paper being discussed:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9795856/
You can read the transcript for this episode here: https://tinyurl.com/potscast124
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Registration is currently open for a clinical trial on post-COVID POTS investigating a new medication that might deplete autoantibodies and decrease POTS symptoms.This is an exciting development for the entire POTS community, as this attention to POTS may lead to a more effective treatment for many people currently living with the disorder.
If you are at least 18, had PCR confirmed COVID and then developed POTS, then learn more about this clinical trial: https://www.alphastudyforpots.com
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
You can take this IRB approved survey at: https://docs.google.com/forms/d/e/1FAIpQLSfrkhyR4cRW9DEB8O4Pvbs9kWuQIlCtZ3gs31J6E55tMoquxg/viewform
Requirements: You must be 18, have a chronic illness like POTS, and listen to The POTScast or another chronic illness podcast.
Time commitment: Approximately 15 minutes
Kate Pederson and Dr. Melanie Finney are researchers at DePauw University and are interested in how people might use podcasts as a form of social support especially for people who may have invisible or chronic illnesses. The survey will ask questions regarding how and why an individual listens to podcasts, and to what extent they find them helpful. Anyone who is older than 18 years old and chronically ill is eligible to participate in this survey. The survey responses are confidential and completely voluntary. You may stop participation at any time without penalty. If you are interested, please respond to the survey by Friday, April 7, 2023. If you have any questions, you may contact katepederson_2025@depauw.edu or mkfinney@depauw.edu. Thank you for your consideration!
Dr. Dempsey shares her experience in both diagnosing and treating people with MCAS. She always looks for POTS and orthostatic symptoms during diagnosis, as these are often comorbid disorders. Antihistamines and other major medications commonly used to treat MCAS are also discussed.
You can read the transcript for this episode here: https://tinyurl.com/potscast122
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Despite POTS, Shelby is a vivacious mom of two small children who is still on her POTS journey. IV fluids help, as does compression and staying hydrated. Listen to this wonderful interview!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jill Brook explores 10 tips to prevent the onset of autoimmune disease or decrease its symptoms through changes in your diet. These practical suggestions can be tried easily at home to see if a certain food type triggers your symptoms. A must listen!
You can read the transcript for this episode here: https://tinyurl.com/potscast120
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many with severe POTS consider getting a service dog. What's involved? How is the dog trained? What benefits does a service dog provide? Answers to these questions and more in this episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast119
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Paula's youngest child developed POTS as a young teen, and shares the impact that the illness has had on LJ and the entire family. A truly honest and inspirational interview!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
What event triggered your POTS? Infection? Concussion? Pregnancy? Learn about these and more in this episode. The more scientists understand this physiology, hopefully the faster we will get effective treatments.
You can read the transcript for this episode here: https://tinyurl.com/potscast117
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Alexis modified her own experience with dysautonomia in her book for middle schoolers, "Compass Points the Way." She articulates in this book what most adolescents can't - what it feels like to have POTS during a difficult developmental period. A must read for families wanting to better understand the struggles of growing up with POTS.
You can read the transcript for this episode here: https://tinyurl.com/potscast116
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Dempsey is helping us to launch a new series within the POTScast focusing on all things mast cells. These cells are an important part of the immune system and are found throughout the body. Learn more about what happens with these cells malfunction!
You can read the transcript for this episode here: https://tinyurl.com/potscast115
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Rachel owned a fancy bakery when she developed COVID and then POTS. In her mid 20s, her life was forever changed and her illness has forced her to apply for disability. Finding joy in the little things is a new challenge.
You can read the transcript for this episode here: https://tinyurl.com/potscast114
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
While Dr. Gallagher was professionally involved in POTS research, her daughter was diagnosed with POTS. Her background couldn't prepare her for the reality of living with POTS and frustration of not having the answers.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Please help us to better understand POTS! Dr. Pederson and Standing Up to POTS are launching a new online survey that takes 15-20 minutes to complete. We are seeking adults with a POTS diagnosis for this IRB approved survey. Please answer every question, and don't overthink it! We appreciate your time and effort to help us better understand the triggers, symptom load, and quality of life for people with POTS!
Find the survey here: https://www.standinguptopots.org/POTSresearchstudy
Our last episode in this study of the vagus nerve and limbic system, Dr. Hindman offers many options to try to retrain your limbic system to only allow emotional upset when you are truly in danger. For many with hyperadrenergic POTS, this is valuable information!
Please visit Dr. Hindman's website for more information: https://healingdragon.net/wordpress/index.php/news-and-information/
You can read the transcript for this episode here: https://tinyurl.com/potscast112
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Allison, a long-time POTSie who gives back to the community through nursing. After a concussion, she changed specialties which is a better fit for her symptoms. Using MyChart to communicate with practitioners is a great tip! Thanks, Allison!
You can read the transcript for this episode here: https://tinyurl.com/potscast111
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This episode is full of free, must try tips to increase parasympathetic tone that will offset the highly active sympathetic tone found in many POTS patients. Laughing, cool compress on the back of your neck, eye exercises, and much more. A must listen!
Please visit Dr. Hindman's website for more information: https://healingdragon.net/wordpress/index.php/news-and-information/
You can read the transcript for this episode here: https://tinyurl.com/potscast110
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Have you wondered why symptoms seem to loop over time? Why you are stuck in hypervigilance when you are safe? If so, this is the episode for you. Learn the science of the cell danger response, vagus nerve, and the limbic system in POTS flares.
Please visit Dr. Hindman's website for more information: https://healingdragon.net/wordpress/index.php/news-and-information/
You can read the transcript for this episode here: https://tinyurl.com/potscast109
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Mel's life changed after a concussion that led to more serious POTS symptoms. A nurse, she was struggling with symptoms when she confided in a friend who had POTS. Could it be that Mel had it too?
You can read the transcript for this episode here: https://tinyurl.com/potscast108
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many in the POTS and MCAS communities react to medications. Perhaps using a compounding pharmacy that can replace inactive ingredients with alternatives that are less likely to cause a reaction is a good option!
You can read the transcript for this episode here: https://tinyurl.com/potscast107
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Boris and Dr. Moak, true POTS experts, take us through their new review article Pediatric POTS: Where We Stand and discuss developmental issues for children and teens, treatment options including ivabradine, IV saline, abdominal binders and much more as they try to get kids back to school and their lives. Join us for this informative interview!
Article discussed:https://www.researchgate.net/profile/Jeffrey-Boris/publication/361670227_Pediatric_Postural_Orthostatic_Tachycardia_Syndrome_Where_We_Stand/links/62bf0c2d3d26d6389e899e2e/Pediatric-Postural-Orthostatic-Tachycardia-Syndrome-Where-We-Stand.pdf?origin=publication_detail
You can read the transcript for this episode here: https://tinyurl.com/potscast106
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Karen has had POTS symptoms for as long as she can remember, and started passing out at age 15. Unfortunately, it took many doctors and 17 years to get diagnosed. She shares her experience with POTS and pregnancy, how her bedside manner has changed, and much more. Join us for this conversation!
You can read the transcript for this episode here: https://tinyurl.com/potscast105
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Leonard Jason, world renowned father of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research, shares his very personal story with this illness along with what he has learned in his 30+ years of ME/CFS research. The energy envelope, yo-yo effect, prospective studies looking for biological markers of vulnerability, long COVID and so much more is discussed. Many in the POTS community also suffer from ME/CFS. Do you recognize yourself in this episode?
Learn more about Dr. Jason's work.
You can read the transcript for this episode here: https://tinyurl.com/potscast104
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
The holidays can be stressful, especially when living with an unpredictable illness like POTS. Learn how to ask for what you need and make compromises as you form new holiday traditions!
You can dread the transcript for this episode here: https://tinyurl.com/potscast103
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Lacy is a high school student who struggles to remember a time she wasn't sick. Gastroparesis is a big issue for her and she often uses a cane for stability. She's quite upbeat, though, and ready for whatever life throws her next.
You can read the transcript for this episode here: https://tinyurl.com/potscast102
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Smith is a retired interventional radiologist who make a startling discovery - treating venous problems in women with pelvic congestion syndrome who also happened to have POTS led to amazing recoveries. Symptoms like chest pain and anxiety disappeared overnight! If you have pelvic pain and POTS, this episode is for you!
You can read the transcript for this episode here: https://tinyurl.com/potscast101
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Raj is a world renowned POTS physician and researcher who spoke with us about three big POTS research topics: blood volume, autoimmunity, and the norepinephrine transporter. Having done much of this research himself, he paints a beautiful picture of where POTS research has been and where it is going.
You can read the transcript for this episode here: https://tinyurl.com/potscast100
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Zoe was diagnosed with POTS in 8th grade when she started having dizzy spells and shortness of breath. She has adjusted well, and loves to fly 30 feet above the ground doing ribbon aerial work. Great episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast99
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
What is really causing POTS? Is it a problem in the heart? The brain? The gut? Dr. Lasko believes that lower parts of the brain may not be functioning properly in many with POTS, and that correcting this issue early in life, when possible, could help children avoid developing significant symptoms.
You can read the transcript for this episode here: https://tinyurl.com/potscast98
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Like many POTSies, Mackenzie was a teenager leading an active life when she became ill. It took her 2.5 years and a number of ludicrous diagnoses to finally arrive at POTS. At 20, she is now adjusting to life with chronic illness and surrounding herself with people who support her unconditionally.
You can read the transcript for this episode here: https://tinyurl.com/potscast97
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jackie developed POTS and other chronic illnesses after surgery on her foot. She delves deeply into her interests, including ways to manage her symptoms. Her optimism is inspiring as she share things that have helped her along the way. Join us for this delightful and inspiring episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast96
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many POTSies take multiple medications. Join us for a discussion of beta blockers, midodrine, ivabridine, and fludrocortisone - how they work and possible side effects.
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Dr. Pederson just published a new study looking at assessing depression in people with chronic invisible illness. The results are both depressing and enlightening. We need our healthcare practitioners and researchers to understand the contamination from many of these scales with somatic (bodily) symptoms that overinflates depression scores for many in our communty.
The paper discussed in the episode: The Depressing Truth About Depression Scales for People with Chronic Invisible Illness
Best depression scale for chronic illness (in 2022): Center for Epidemiologic Studies Depression Scale
You can read the transcript for this episode here: https://tinyurl.com/potscast94
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Members of the POTS community gathered in Springfield, Ohio on October 22, 2022 for the 9th Annual Standing Up To POTS 5K/2K, presented by Normalyte and Thrivent. The weather was gorgeous, the POTS community was out in force, and lots of connections were made. We raised more than $36,000 associated with this event that will go toward the Standing Up to POTS Research Fund.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
What does polio have to do with myalgic encephalomyetlitis (ME) and POTS? You'll have to listen to this episode with Dr. Hyde, a top ME expert who has treated ME patients since the 1980s. He also discusses SPECT scans and how they can help to get disability payments for some patients.
Nightingale Foundation: https://nightingale.ca/
Book Downloads: https://nightingalepress.ca/collections/all
You can read the transcript for this episode here: https://tinyurl.com/potscast93
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jenna is married and trying to live her best life despite POTS. Symptoms began early, but didn't stop her from playing college volleyball. Napping in odd places is common as she battles severe fatigue.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Beltran explains physiological dosing of vitamin D, leaky gut syndrome as it relates to gluten, and much more in this episode of The POTScast. A real leader in high dose vitamin D therapy, Dr. Beltran explains the many and varied functions of this hormone.
Dr. Beltran's Youtube channel and before and after pictures of dermatological issues.
You can read the transcript for this episode here: https://tinyurl.com/potscast91
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many people with POTS also have small fiber neuropathy - the small nerves in their legs are decreased in number and activity. Dr. Saperstein talks about that in the context of COVID and answers several listener questions about migraine headaches, tinnitus, brain fog and more. Join us for this informative chat!
You can read the transcript for this episode here: https://tinyurl.com/potscast90
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Anna grew up dancing and wanted to be a pro. After a bout with mono, her legs started giving out randomly. She was diagnosed with POTS and needed to find a new dream: photography. Anna is both inspirational and insightful as she talks about how POTS has impacted her life.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many like to think about POTS as having three subtypes - hyperadrenergic, neuropathic, and hypovolemic. We discuss these subtypes, their causes, associated symptoms, and treatments that might help. What subtype of POTS do you think you have?
You can read the transcript for this episode here: https://tinyurl.com/potscast88
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Reddy is a COVID long-hauler herself. She developed POTS, and symptoms worsened each time she caught COVID. She struggled for a diagnosis, and now is a champion in the clinic and in advocacy for people who develop POTS after COVID infection or vaccine injury. She walks through the theory of how this occurs and a range of treatment options that might help with equal parts compassion and conviction.
Dr. Reddy's article discussed in this episode: https://www.cureus.com/articles/56242
You can read the transcript for this episode here: https://tinyurl.com/potscast87
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
It took Jamie 12 years to be diagnosed with POTS after the onset of symptoms. She had "remissions" from symptoms in the early years that allowed her to become a firefighter and EMT, positions she can no longer manage. She is starting a new medication, and we hope that it helps her to feel better!
You can read the transcript for this episode here: https://tinyurl.com/potscast86
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many people in the POTS community have experienced medical trauma as a patient, caregiver, or sibling. Gaslighting, invasive procedures, and the chronicity of the illness can all contribute. How can you protect yourself from this trauma or deal with it if trauma occurs? Join Dr. Gorman-Ezell in this episode to find out!
You can read the transcript for this episode here: https://tinyurl.com/potscast85
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Stephanie was a competitive volleyball player in high school when several concussions sidelined her. Over time, POTS symptoms began to appear and the battle to get diagnosed began. It took several years to find a cardiologist who believed her, but she is back on track to live her dreams.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Maddie faints a lot as part of her POTS, which she developed around age 16. She describes getting and training her therapy dog and the deep pressure that helps when she blacks out. Maddie has a great attitude about living with her chronic illness.
You can read the transcript for this episode here: https://tinyurl.com/potscast83
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Laila Schenkel is a molecular geneticist who specializes in choline transporters. Comparing this transporter in the skin of one POTS patient with controls, she found that these transporters are fewer and less functional in this POTS patient. Basic science at its best!
You can read the transcript for this episode here: https://tinyurl.com/potscast82
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
We invite you to register for the in-person or virtual version of the 9th Annual Standing Up to POTS 5K/2K.
100% of the proceeds will fund POTS research seeking to improve the quality of life for people living with POTS now. Largely because of this event, we have already awarded more than $318,000 to top POTS researchers in five countries. Please join us in funding this important research!
Katherine developed POTS secondary to Lyme disease after a tick bite, causing her to complete her senior year of high school online. When at her sickest, she re-connected with the man she would marry. Find out how by listening to this wonderful episode!
Learn more about health coaches at https://www.standinguptopots.org/healthcoach
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Mary Katherine has developed POTS twice - first as a teen and again after COVID. Her PICC line to get intravenous fluids made lifting heavy objects impossible, especially for a cattle breeder who loves to show cows. Join us for this unique episode!
You can read the transcript for this episode here: https://tinyurl.com/potscast80
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Hannah has Lyme and POTS, and after working for others for a few years founded her own company - Chronically Capable. Featured by the Wall Street Journal and Forbes magazine, her company matches chronically ill people with potential employers with the need for accommodations front and center. Join us for this wonderful interview! Her website is wearecapable.org.
You can read the transcript for this episode here: https://tinyurl.com/potscast79
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Claire developed POTS after a back injury. Work as a paramedic was triggering, and she found that she had to dig herself out of a dark hole. Volunteering for The POTS Foundation in Australia was part of growing into her new reality.
Any Aussies out there looking to connect? Check out www.potsfoundation.org.au
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Abby is a college sophomore with a love of music and crocheting. Like many, she put the pieces together to find her diagnosis. Abby is resilient despite the obstacles - finding friends who are supportive and taking care of herself. This is an inspiration episode of the POTS diaries!
You can read the transcript for this episode here: https://tinyurl.com/potscast77
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Boris is one of the top pediatric POTS docs in the world, and we were fortunate to have him share his thoughts on getting these highly achieving kids back to living their life. He covers a lot of ground - misdiagnosis of POTS as anxiety/depression, impact of POTS on development, mitochondrial disorders and so much more.
Want to learn more about Dr. Boris? Check him out at https://www.jeffreyborismd.com/
You can read the transcript for this episode here: https://tinyurl.com/potscast76
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Madison was a competitive rock climber before she developed Lyme disease and POTS. She couldn't walk for 7 months, but has climbed her way back to working part time in a school and practicing meditation and yoga. Join us for this deep and personal conversation!
You can read the transcript for this epiosde here: https://tinyurl.com/potscast75
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jolene was married and enjoying an adventurous life in Florida when POTS struck. Like many, she was misdiagnosed and returned home to MN to decrease her need to fly. Now a meditation and mindfulness teacher, she has found a new adventure.
You can read the transcript for this episode here: https://tinyurl.com/potscast74
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many chronically ill students require assistance to level to playing field at school. 504 plans and Individualized Education Plans are state mandated and can do just that. What's the best option for your situation? Listen to this episode with Dr. Pederson and Dr. Brannan to find out!
School and College Accommodations: https://www.standinguptopots.org/livingwithpots/school
Letters for School Personnel: https://www.standinguptopots.org/advocacy/awareness
You can read the transcript for this episode here: https://tinyurl.com/potscast73
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Rita was an actress/dancer when POTS crept in and changed her life. She could no longer continue the physicality, and channeled her creative energy into writing. She credits the CHOP exercise protocol with improving her quality of life.
You can find the CHOP exercise protocol at the bottom of this page, and her articles on POTS.
You can read the transcript for this episode here: https://tinyurl.com/2fx6nx9v
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Diane is a retired dietician who shares her journey with POTS as well as her knowledge of the MTHFR gene mutations and nutritional changes to support that. She move to eastern Washington to decrease her symptoms, and advocates self care.
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Dr. Jill Schofield is a leader in the treatment and research of POTS, mast cell activation syndrome, and antiphospholipid syndome. Join us to learn more about these, IVIG, and lifestyle changes that improve quality of life!
You can read the transcript for this episode here: https://tinyurl.com/5n82f3pf
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Join Rhonda for an exploration of healthcare from both sides - as a physician assistant and POTS patient. Her medical background and connections helped her to navigate the system, but the effects of POTS are equally devastating.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Becky developed POTS a few years ago after the birth of her son. Following several surgeries for endometriosis, her symptom load increased and she was diagnosed with POTS. Follow her journey through work, family, and POTS in this episode!
You can read the transcript for this episode here: https://tinyurl.com/2p9awbfz
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Join Jill and Cathy for a wonderful discussion of autoimmunity and how a misdirected immune system can wreak so much havoc! There is a growing body of literature suggesting that POTS might be autoimmune in some people, so this is an important topic for our community!
You can read the transcript for this episode here: https://tinyurl.com/3c899axj
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Trina had a good thing going when POTS symptoms struck her suddenly one day. It took a year for her to get diagnosed and necessitated a job change and moving back home for a while. Luckily, she is doing better now and works as a freelance writer who focuses on issues like POTS!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Elli was a high school senior being recruited for college volleyball when she developed POTS after COVID. Her first year of college has been difficult, but a supportive family and friend group have made it bearable. Elli has a great attitude as she describes her first year living with POTS.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
An episode on POTS in adolescence is long overdue! Dr. Maxwell answers many common questions about POTS - why is exercise important? Why does blood pooling cause increased heart rate? Is the heart of a POTS patient smaller than others? What environmental triggers might make symptoms worse? All this and more in this episode of The POTScast.
Mast cell criteria article mentioned in this podcast: Diagnosis of mast cell activation syndrome: a global “consensus-2”
You can read the transcript for this episode here: https://tinyurl.com/yy4zxczm
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jim's wife Sandy became ill with POTS two years ago, and he describes how they have adapted their daily life in light of the unpredictability of her illness. This is a must listen for caregivers of POTS patients, as we work to care for our loved ones with love and grace.
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Patty is a respiratory therapist who first developed POTS symptoms in her 50s. Big changes ensued - new job, moving to an apartment, and resigning from the Natural Disaster Medical Assistance Team. Persistence has helped her regain significant quality of life.
You can read the transcript for this episode here: https://tinyurl.com/5ykhfdbh
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
For years, there has been speculation about how the HPV vaccine might lead to POTS in a small percentage of people. Dr. Dempsey describes a theory that connects mast cells, POTS, and the HPV vaccine in vulnerable individuals.
Article discussed: Post-HPV-Vaccination Mast Cell Activation Syndrome: Possible Vaccine-Triggered Escalation of Undiagnosed Pre-Existing Mast Cell Disease?
Her websites: https://www.drtaniadempsey.com/ https://aimcenterpm.com/
You can read the transcript for this episode here: https://tinyurl.com/5n95spxa
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Like many, Abbie has had POTS symptoms for a long time, but has only been diagnosed in the past 6 months. As a young person, she is learning to listen to her body as she tries to balance work, a social life, and POTS.
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Have you ever thought about why SUTP was formed? Listen to this touching episode between our founder, Cathy Pederson, and her daughter Kate as they talk about life before and after Lily was diagnosed with POTS. A must listen for families struggling to balance the needs of all of their children!
You can read the transcript for this episode here: https://tinyurl.com/3bjk2h79
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Have you ever wondering how leaky gut, autoimmunity, and the microbiome are related? If so, this is the episode for you as Jill discusses ways to vary your diet to improve gut health naturally and why that's important.
You can read the transcript for this episode here: https://tinyurl.com/2pmnud7v
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College students with POTS often have extra burdens - doctor's appointments and ER visits alone, reliance on friends and faculty for support or a ride. Alli describes her experience with POTS as a young person who is adjusting to her new reality.
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Amber, a freshman in college, describes her journey with POTS. She was lucky, and was diagnosed in 6 months. In her case, a lot of salt and building up the exercise slowly over time helped her to get back on her feet and off to college this year. We wish her the best in her aspirations to become a physician herself one day!
You can read the transcript for this episode here: https://tinyurl.com/2p9bk4hk
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In this POTS Basics episode, we cover some uncommon POTS comorbidities that can cause or exacerbate POTS symptoms. Join us for a tour of the brain and spinal cord in relation to the bony structures that surround them a way that we haven't done before on The POTScast!
You can read the transcript for this episode here: https://tinyurl.com/24zk85f5
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Heidi was a professional dancer for more than a decade, but was secretly struggling with POTS symptoms. Doctors turned her away, but one homeopath in Asia was able to relieve her symptoms - there was hope! Listen to this fascinating episode with Heidi!
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Samantha talks about her experience with POTS and the impact of functional neurology on her quality of life. The imbalances between the left and right side of her body were problematic, and the right exercises made a huge difference!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Lovich was recommended for The POTScast by one of our listeners after he helped her decrease her symptom load dramatically. A chiropractic functional neurologist, he uses various techniques to re-train the brainstem and other brain areas to improve overall function and decrease POTS symptoms. It is a fascinating episode about eye movement, vestibular inputs, balance, and the brain!
You can read the transcript for this episode here: https://tinyurl.com/2p8jh7mk
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Kristen is still struggling with POTS and trying to reclaim her life. Despite her brain fog and other symptoms, she works and has written a book. You will hear some of her symptoms in the episode (with her permission), that we hope will make others feel less alone.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Kelsey is a mother of two small boys and a physical therapist who shares her recent experience with the October slide. Balancing symptoms, work, and family, she continues to look for appropriate treatment.
You can read the transcript for this episode here: https://tinyurl.com/3s3ndbnw
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Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Want to support a good cause? Show up in person or join us virtually for the POTS in Pants 5K. All proceeds will be donated to the Standing Up to POTS Research Fund. Check it out: https://managingmovement.com/pots-5k
Join us for a little free therapy related to dealing with the grief and loss associated with chronic illnesses like POTS. Techniques are explained to help deal with sudden temporary upsurges of grief that can benefit many. This is a must listen episode!
You can read the transcript for this episode here: https://tinyurl.com/yckmvh42
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If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Jeannie can't remember a time when she didn't have symptoms. While she was diagnosed with hypermobile Ehlers-Danlos Syndrome years ago, her POTS diagnosis is more recent. Working to improve her own quality of life, she created a modified Pilates regime specifically for people in our illness community.
Check out Jeannie's website at: https://jeanniedibon.com/
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If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
John paints an incredibly open and honest picture of how developing POTS as a teen impacted his life and relationship with his family. Growing up with a strong and invincible idea of masculinity, John was forced to re-evaluate what it was to be a man as he struggled with chronic invisible illness. This is a don't miss episode of The POTScast!
You can read the transcript for this episode here: https://tinyurl.com/upu694sa
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
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Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
John paints an incredibly open and honest picture of how developing POTS as a teen impacted his life and relationship with his family. Growing up with a strong and invincible idea of masculinity, John was forced to re-evaluate what it was to be a man as he struggled with chronic invisible illness. This is a don't miss episode of The POTScast!
You can read the transcript for this episode here: https://tinyurl.com/upu694sa
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Kevin Lasko approaches POTS and associated syndromes a little differently from most healthcare practitioners. His approach is to determine what part of the central nervous system has been affected and attempt to slowly retrain it to process properly through a variety of eye, balance, and other exercises. Check out this episode for a non-traditional approach to POTS treatment!
You can read the transcript for this episode here: https://tinyurl.com/4xd2pvjv
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Kevin Lasko approaches POTS and associated syndromes a little differently from most healthcare practitioners. His approach is to determine what part of the central nervous system has been affected and attempt to slowly retrain it to process properly through a variety of eye, balance, and other exercises. Check out this episode for a non-traditional approach to POTS treatment!
You can read the transcript for this episode here: https://tinyurl.com/4xd2pvjv
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Russell, a rockclimber from Washington who developed POTS as a teen and continues to battle his way back. His main symptoms are dizziness and brain fog, but these are debilitating. Find out how he has worked his way back to climbing, despite his ongoing limitations. And, a little update about a treatment that has really improved his symptoms!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Russell, a rockclimber from Washington who developed POTS as a teen and continues to battle his way back. His main symptoms are dizziness and brain fog, but these are debilitating. Find out how he has worked his way back to climbing, despite his ongoing limitations. And, a little update about a treatment that has really improved his symptoms!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Daniella is a University student who spent several of her teen years battling symptoms and chasing a diagnosis. Suffering from POTS and chronic fatigue syndrome, she has a great philosophy on pacing herself using a red, yellow, and green light system for activities. We hope that you enjoy this inspirational episode of The POTScast!
You can read the transcript for this episode here: https://tinyurl.com/2p9yf23r
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Daniella is a University student who spent several of her teen years battling symptoms and chasing a diagnosis. Suffering from POTS and chronic fatigue syndrome, she has a great philosophy on pacing herself using a red, yellow, and green light system for activities. We hope that you enjoy this inspirational episode of The POTScast!
You can read the transcript for this episode here: https://tinyurl.com/2p9yf23r
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Several small studies indicate that there may be a link between POTS and glucose intolerance. Listen to this episode with Jill Brook to find out the possible connection. Knowledge is power! Does the size and number of meals matter? Amount or kind of carbohydrates that you consume? All this and more on this episode of The POTScast.
you can read the transcript for this episode here: https://tinyurl.com/2p8mxjm3
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Several small studies indicate that there may be a link between POTS and glucose intolerance. Listen to this episode with Jill Brook to find out the possible connection. Knowledge is power! Does the size and number of meals matter? Amount or kind of carbohydrates that you consume? All this and more on this episode of The POTScast.
you can read the transcript for this episode here: https://tinyurl.com/2p8mxjm3
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Linda's daughter has perhaps had POTS all of her life, but the impact of the illness became more apparent in her teen years. Linda describes the impact of POTS from a parent's perspective, and articulates what many POTS parents are often thinking. Hunting for a practitioner who can help. Emergency department visits during flares. Supporting a child with POTS daily. We are so glad that she shared her journey with us here!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Linda's daughter has perhaps had POTS all of her life, but the impact of the illness became more apparent in her teen years. Linda describes the impact of POTS from a parent's perspective, and articulates what many POTS parents are often thinking. Hunting for a practitioner who can help. Emergency department visits during flares. Supporting a child with POTS daily. We are so glad that she shared her journey with us here!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Garrett was a high school athlete when COVID-19 turned his life upside down. By day 4 of his illness, he knew that things were not going to be the same. He has seen numerous doctors in the past year trying to reclaim the life of a carefree teen, but instead suffers daily with POTS symptoms. Thankfully, he has a wonderful support system to help him deal with this new reality.
You can read the transcript for this episode here: https://tinyurl.com/yhjxmwha
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Garrett was a high school athlete when COVID-19 turned his life upside down. By day 4 of his illness, he knew that things were not going to be the same. He has seen numerous doctors in the past year trying to reclaim the life of a carefree teen, but instead suffers daily with POTS symptoms. Thankfully, he has a wonderful support system to help him deal with this new reality.
You can read the transcript for this episode here: https://tinyurl.com/yhjxmwha
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Afrin, a world renowned mast cell researcher and clinician, shares his insights on how misbehaving mast cells could account for a variety of POTS symptoms including the famous POTS flares. We hope you will join us! His book is Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
You can read the transcript for this episode here: https://tinyurl.com/pmdj6z79
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Afrin, a world renowned mast cell researcher and clinician, shares his insights on how misbehaving mast cells could account for a variety of POTS symptoms including the famous POTS flares. We hope you will join us! His book is Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
You can read the transcript for this episode here: https://tinyurl.com/pmdj6z79
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Ashley developed POTS when she was 13, and was lucky enough to be properly diagnosed in 2-3 months thanks to her tenacious mother. Surviving the Florida heat, Ashley talks about how she has lived her life after diagnosis. College, study abroad in France, and earning a Master's degree are just part of her story!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Sandy is a physical therapist assistant, wife, and mother who developed POTS after a mono infection when she was 40. Despite the love and support of her family, she continues to struggle with managing her symptoms and is actively seeking treatment at Johns Hopkins. We hope that you will enjoy her story!
You can read the transcript for this episode here: https://tinyurl.com/4vxj4pmd
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
In this episode, Jill and Dr. Cathy Pederson discuss the ins and outs of Ehlers-Danlos Syndrome (EDS), Type III (hypermobile) and its relevance for many POTS patients. Many POTS patients also have EDS, a genetic mutation of one or more genes that code for the protein collagen. How can that defect cause so much havoc?
To follow along with the diagnosis criteria, please check out this page: https://www.standinguptopots.org/resources/pots-causes
You can read the transcript for this episode here: https://tinyurl.com/2p928zz3
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Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!
Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This week, we flip the script! By now, we are used to Jill interviewing POTS experts and POTSies alike, but in this episode, she and her husband Mike share their POTS journey with us. It's a must listen as they describe 17 years to diagnosis and life coping with a myriad of syndromes!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Mike is a data analytics specialist, dad, and POTS patient. His symptoms were varied and devastating, but he has methodically studied his own body's reaction to various stressors and found his way back to normal function. This is an inspirational episode highlighting the helpfulness of observation and self-discipline. We hope you will listen!
You can read the transcript for this episode here: https://tinyurl.com/3dncyzju
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Svetlana Blitshteyn, one of the top POTS physicians and researchers in the world, presents her recently published theory that POTS affects the central nervous system as well as the peripheral (autonomic) nervous system. A neurologist, she has studied the literature and observed trends in POTS patients in her own practice at the Dysautonomia Clinic to develop this theory. We hope that you will check out her paper discussed in this episode: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC7936931/pdf/415_2021_Article_10502.pdf
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You can read the transcript for this episode here: https://tinyurl.com/3kh3t9u6
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Rachel is a 22 year old college student who had a 7 year journey to diagnosis. A talented artist, she drew a comic about her experience with POTS diagnosis and treatment. You can find her comic here: https://www.standinguptopots.org/POTScomic
You can read the transcript for this episode here: https://tinyurl.com/yw2rhcej
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Sarah is a POTS patient and mother of three who has struggled to balance her physical struggles with the lifestyle of raising children. Not wanting others to feel alone as she did early in her journey, Sarah started a blog and social media campaign called Survive Your Struggle. She shares her struggles - being wheelchair bound for a time, and her journey back to a more balanced life in this episode of The POTScast!
You can read the transcript for this episode here: https://tinyurl.com/mv7amjvx
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
POTS is often thought of as a "female" disorder, which has negative implications for men who are diagnosed with POTS and other chronic invisible illnesses. Because of Western notions of masculinity, admitting weakness (even due to illness) is particularly difficult for many men and requires a different approach in treatment and support. Trigger warning: We do discuss suicidal behavior in this episode.
You can find the article we are discussing at https://jomh.org/articles/10.31083/jomh.2021.135
You can read the transcript for this episode here: https://tinyurl.com/4rhwkcww
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Jackie as she tells the story of the day that she knew that something was wrong. As a Division I basketball player, Jackie used her competitive mentality to fight her way back from being bedridden to hiking long distances. How did she do it? Listen to find out more about her amazing story!
You can read the trancript for this episode here: https://tinyurl.com/mw7c74rt
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Colleen Steckel went on a camping trip years ago, and started to feel ill. She was pregnant at the time, and thought that was the cause. Or maybe she has the flu. Decades later, she still suffers... Colleen is an activist in the myalgic encephalomyelitis (ME) community, and was later also diagnosed with POTS. She is a member of the Board of Directors for ME-International.org, and brings hope as she describes both diagnosis and treatment options for people with ME.
The resources described in this episode
- International Consensus Criteria Questionnaire
- IC Primer
You can read the transcript for this episode here: https://tinyurl.com/bddxpbud
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Best wishes from all of your friends at Standing Up to POTS!
You can read the transcript for this story here: https://tinyurl.com/2s3cz7m9
Meet Henry from the UK, who suffers from POTS, EDS, and vestibular migraines. These disorders have greatly impacted his quality of life, especially in the 30 years prior to receiving a proper diagnosis. He is upbeat as he describes his experience with chronic illness, particularly as a male.
You can read the transcript for this episode here: https://tinyurl.com/2p95ty97
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
We invite you to Stand Up to POTS with us this holiday season. All gifts are greatly appreciated as we fund advocacy projects like The POTScast as well as our Research Fund. To date, we have funded more than a quarter million dollars in original POTS research!
Here's how you can donate:
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Listen to the new power couple of POTS - Mike and Jill Brook - as they discuss nutritional strategies to increase blood volume in POTS patients in hopes that it will help to decrease symptoms. They are funny and engaging as they share a ton of great tips, including the best ways to hydrate. This is a don't miss episode!
You can read the transcript for this episode here: https://tinyurl.com/5n8em5th.
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Keeya suffers from mast cell activation syndrome, POTS, and EDS. She appeared on EPSN with a story about her participation in a national dog competition with accommodations for her illness. It's a great story. Find out how her symptoms have gone into remission!
Her blog is: hellsbellsandmastcells.com
You can read the trancript for this episode here: https://tinyurl.com/esuacbve
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Edgell is associate professor of kinesiology at York University in Toronto, Canada. She is researching a new potential treatment for POTS - the FDA approved Q collar (approved for other uses) that applied a small amount of pressure to the neck. Join us for this discussion of the device and the physiology that might make it an effective new treatment. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
Article discussed in this episode:
Effect of a neck compression collar on cardiorespiratory and cerebrovascular function in postural orthostatic tachycardia syndrome (POTS)
You can read the transcript for this episode here: https://tinyurl.com/5v8ujdjv
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
We hope you enjoy this charming episode where Jill interviews her husband, Mike, about his experience dealing with her chronic illness. His support and innovation to make her life easier and more productive is truly inspiring!
You can read the transcript for this episode here: https://tinyurl.com/fczt2ura
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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Many people with POTS and other chronic invisible illnesses have been gaslighted by the medical community and friends/family. How do you handle it when people tell you that your illness is all in your head? Find out in this episode of The POTScast, featuring Katie Gorman-Ezell, Ph.D., a practicing clinical social worker and Assistant Professor of Social Work at Ohio Dominican University as well as a member of the SUTP Board of Directors.
You can read the transcript for this episode here: https://tinyurl.com/s83zdyrk
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Brooke O'Shea is the current President of the Dysautonomia Support Network, and mother of two daughters with Ehlers-Danlos Syndrome and one with POTS. This is a really honest episode of trials and tribulations, silver linings and advocacy. We hope you enjoy it! Check out the materials on the DSN website: https://www.dysautonomiasupport.org/
You can read the transcript for this episode here: https://tinyurl.com/j766wbm5
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This is the best explanation we have heard about mast cells, mast cell activation syndrome, and how they relate to POTS and the hypermobile form of Ehlers-Danlos Syndrome. A POTS, EDS, and MCAS patient herself, Beth O'Hara actively seeks understanding and treatment of issues related to complex medical issues like mast cell activation syndrome. What a great resource!
You can find her website at www.mastcell360.com
You can read the transcript for this episode here: https://tinyurl.com/4uprh3ns
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet our Director of Social Media! Kate has been integral in the growth of our social media platforms and shares what she has learned about POTS from living with her severely affected sister and working with POTS patients from around the globe. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can read the transcript for this episode here: https://tinyurl.com/rzx8ejew
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Sleep is so important, but elusive for 98.4% of POTS patients that Standing Up to POTS surveyed. Join us for a discussion of the research related to sleep in POTSies and tips that might help you to get a better night's sleep. If sleep problems persist, please mention it to your healthcare provider - they have tools that can help you to get a more restful sleep.
Want to check out the article being discussed in this episode? Here it is: Sleep Disturbance Linked to Suicidal Ideation in Postural Orthostatic Tachycardia Syndrome
You can read the transcript for this episode here: https://tinyurl.com/49vtskhe
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Dr. Noah Greenspan who worked with many COVID patients turned long haulers in the pandemic's epicenter, New York City. Dr. Greenspan describes his work with these patients with a particular focus on breathing issues, often seen in POTS patients as well. Join us for this great episode! Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can read the transcript for this episode here: https://tinyurl.com/yde5e3z7
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Chelsea, a POTS patient who's symptoms appeared out of the blue one day when she was at work at the Cleveland Clinic. Listen to her journey to diagnosis and through treatment,as she sought to find and accept her new normal.
You can read the transcript for this episode here: https://tinyurl.com/9k35pyp5
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Rob, a POTS patient whose symptoms became problematic in his early 20s. He found that body building helped him to control his symptoms, and got him off of his POTS meds (for now). Rob shared his story with us because he wants other young men with POTS to feel less alone.
You can read the transcript for this episode here: https://tinyurl.com/4h5t4kyv
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Standing Up to POTS' largest fundraiser of the year is our annual 5K/2K. For the first time, we are offering both an in-person version at Wittenberg University in Springfield, Ohio on October 30, 2021 and a virtual 5K/2K anywhere at your convenience. We hope that you will join us in this event! You can register at https://www.standinguptopots.org/annual-5k
Quality of life can be negatively impacted by chronic illnesses like POTS. Please join us for an honest discussion of quality of life based on the scientific literature and personal experience. Trigger warning: this episode gets heavy at times, and discusses suicide as related to poor quality of life in POTS patients. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
Links referenced in this episode:
Health-Related Quality of Life and Suicide Risk in Postural Tachycardia Syndrome
CDC Healthy Days Questionnaire
Standing Up to POTS page on Suicide Prevention
You can read the transcript for this episode here: https://tinyurl.com/3ps5jzws
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Join us for a fascinating interview of Dr. Michael Goodkin, MD FACC, who is a retired general adult cardiologist and father of a POTS patient. Gain an insider's view of navigating the medical system as a parent rather than a practioner. To find a practioner doing the kinds of manipulation that Dr. Goodkin mentioned, visit https://cranialacademy.org/find-a-physician/
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
You can read the transcript for this episode here: https://tinyurl.com/5b8vzhue
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Dr. Leonard Weinstock is a gastroenterologist who specializes in patients with a variety of syndromes: postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome, mast cell activation syndrome, irritable bowel syndrome and more. Join us for this fascinating interview on gastrointestinal issues related to these syndromes, with a focus on small intestine bacterial overgrowth (SIBO). He also discusses the use of low dose naltrexone (LDN) in his practice.
If you would like to see that article that Dr. Weinstock and Jill discuss in this episode, click here: https://casereports.bmj.com/content/2018/bcr-2017-221405.full
You can read the transcript for this episode here: https://tinyurl.com/tfcm9dty
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Tanya, a mother of three who developed POTS and chronic fatigue syndrome/myalgic encephalomyelitis secondary to a mild COVID infection. Her life was turned upside when she was diagnosed with long haul syndrome. Listen to her moving story and her fight to discover her new life.
You can read the transcript of this episode here: https://tinyurl.com/ym2znv3f
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
This episodes discusses the use of 504 (medical disability) and IEP (individualized educational plans) for students who need classroom accommodations. Dr. Brian Yontz speaks from the perspective of education policy and what the schools can do to help these children, while Dr. Pederson speaks as a POTS mom about her daughter's experience with K-12 schools. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can read a transcript of this episode here: https://tinyurl.com/2t4yn9bz
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
A talented ballerina, Emily's life changed in her teenage years after repeated ankle injuries that eventually led to surgery and POTS. This is an absolutely enchanting story of love, strength and resilience both for Emily and her mom Stacy. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can read the transcript here: tinyurl.com/vsx22wwy
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Claire Seeley is a clinical and research nurse who works with POTS patients, and is a POTS patient herself. Join us for this fabulous interview as she discusses her personal struggles with POTS and her role in treating Australian POTS patients. She has also started the first POTS nonprofit in Australia, which you can find at https://potsfoundation.org.au. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can read the transcript of this episode here: https://tinyurl.com/vnuynw2d
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Join us to meet Carly, a member of the Standing Up to POTS Board of Directors and POTS patient herself. Carly's POTS journey hit the lowest of lows, but with the right medications and a strict exercise regime, she is now thriving. We hope you will listen to her story! Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
Read the transcript here: https://tinyurl.com/9v7jd739
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Orthostatic intolerance is related to many symptoms of POTS. Join us for an overview of what contributes to the body's inability to be upright in POTS patients and what you might try to decrease symptoms. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can access the transcript for this episode here: https://1drv.ms/w/s!Ag27qqS6ODzRmT8SNssTyik6V4Zo?e=d5Xi7D
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Please join us for an interview with Dr. Linda Bluestein, an anesthesiologist and pain specialist who is a hypermobility patient herself. This is a great conversation about pain management and living with Ehlers-Danlos syndrome and other hypermobility disorders. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
You can read the transcript here: https://1drv.ms/w/s!Ag27qqS6ODzRmTyHDQfgjNzcwuUO?e=rKAwMJ
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Join us to listen to Lindsay's 10+ year journey with POTS, and how she has found different ways to accomplish her goals. Her story is inspirational! Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
POTS is the most common form of dysautonomia, and most of its symptoms are a result of dysregulation of the autonomic nervous system. Don't know what that is or why it matters? Join us for this episode to find out how it regulates automatic bodily functions like heart rate and blood pressure!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Joanna Behm, a POTS patient and occupational therapist, who shares some great tips to improve the quality of life for people with POTS and hypermobile disorders. We think that you will walk away from this episode with a new idea to try!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet Lily, and listen to her journey through POTS. She was healthy and energetic until she got mono at age 10, and has been sick ever since. Lily was the inspiration for Standing Up to POTS. She's 19 now, and doing better. Her message? Never give up!
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
POTS is a chronic invisible illness that can be quite debilitating. Join us for an overview of common POTS symptoms, triggers, and possible treatment options. We will also describe the Standing Test which is often used to diagnose POTS.
Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Meet the three members of the Standing Up to POTS Board of Directors who will serve as your guides through postural orthostatic tachycardia syndrome via The POTScast. In this short episode, meet Carly Berna, Cathy Pederson, and Jill Brook. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!
Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/
Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
Learn about The POTScast presented by Standing Up to POTS, and what we hope to accomplish for our listeners