Talking Head Pain: Recent Episodes
Global Healthy Living Foundation
Talking Head Pain is a podcast that confronts head pain, head on.
Brought to you by the Global Healthy Living Foundation and hosted by migraine advocate Joe Coe, this show explores how people living with migraine, cluster headache and other types of intense pain find ways to better manage their disease.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
In the final episode of our three-part Talking Head Pain mini-series, host Erik Stone sits down with Dr. Alicia Duyvejonck, a nurse practitioner and nationally recognized leader in headache care, to explore the real-world challenges of treating acute migraine attacks in clinical settings. They unpack common barriers, including systemic constraints, insurance hurdles, and comorbidities that complicate treatment selection. From newer medication classes like gepants to optimizing care through urgent and aggressive early intervention, this episode offers insights that can help healthcare providers tailor treatment strategies for patients in the middle of an attack.
For more information about the program, and to access the UP-END Migraine initiative—including podcast episodes, video modules, quizzes, and survey insights—visit: ghlf.org/upendmigraine-education.
Meet the Team
Host: Erik Stone, Director of Data, Learning, and Evaluation at GHLF.
A podcast episode produced by Ben Blanc, Director of Digital Production and Engagement at GHLF.
This podcast was made possible with support from Pfizer.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
See omnystudio.com/listener for privacy information.
In this second episode of Talking Head Pain: For the Healthcare Professional, our host Erik Stone speaks with Dr. Nina Riggins, a neurologist and leading headache specialist, about the critical role of preventive treatment in migraine care. They unpack common misconceptions among healthcare providers, explore when to start preventive therapies, and discuss how to avoid medication-overuse headache. With a focus on individualized care, health equity, and the latest advances in migraine prevention—such as CGRP-targeted therapies—this episode offers actionable insights to help providers intervene earlier and more effectively.
For more information about the program, and to access the UP-END Migraine initiative—including podcast episodes, video modules, quizzes, and survey insights—visit: ghlf.org/upendmigraine-education.
Meet the Team
Host: Erik Stone, Director of Data, Learning, and Evaluation at GHLF.
A podcast episode produced by Ben Blanc, Director of Digital Production and Engagement at GHLF.
This podcast was made possible with support from Pfizer.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain: For the Healthcare Professional, our host Zoe Rothblatt sits down with Erik Stone, Director of Data, Learning, and Evaluation at GHLF, and a migraine patient advocate, to explore why getting a migraine diagnosis can feel like a battle—and what health care providers can do about it. Drawing on survey data from healthcare professionals and patients, Erik reveals key disconnects in how migraine is diagnosed and treated. They discuss disparities by race, gender, and socioeconomic status, and why many patients wait far too long for preventive treatment. If you treat patients with migraine, this episode offers insights to help close the gap between diagnosis and care.
For more information about the program, and to access the UP-END Migraine initiative—including podcast episodes, video modules, quizzes, and survey insights—visit: ghlf.org/upendmigraine-education.
Meet the Team
Host: Erik Stone, Director of Data, Learning, and Evaluation at GHLF.
A podcast episode produced by Ben Blanc, Director of Digital Production and Engagement at GHLF.
This podcast was made possible with support from Pfizer.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe sits down with neurology experts Dr. Saikali and Dr. Blumenfeld. They explore the significant advances from past therapies to today's targeted treatments that offer new hope for migraine patients. Discover how the integration of new medical strategies and patient education is reshaping the way the condition is managed, aiming for what Dr. Blumenfeld calls “crystal clear days” of no pain and optimal life quality.
Among the highlights in this episode:
01:50: Dr. Blumenfeld explains the shift in migraine management toward specific and effective medications with fewer side effects
02:12: Dr. Saikali emphasizes the importance of patients bringing comprehensive medical histories to consultations to ensure effective and efficient treatment planning
04:42: Dr. Blumenfeld describes the patient-provider partnership as a journey toward migraine freedom, stressing the goal of achieving “crystal clear days”
06:44: Dr. Saikali discusses the critical role of addressing comorbid conditions to improve the effectiveness of migraine medications
09:02: Joe and Dr. Blumenfeld discuss the importance of breaking the cycle of frequent migraine with newer treatments
14:19: Dr. Saikali and Dr. Blumenfeld explore the stigma around migraine
19:31: Joe discusses how proper migraine treatment has enabled him to address other health issues, highlighting the holistic impact of effective migraine management
23:03: Dr. Saikali advocates for patients to keep a health journal or find personal ways to monitor their progress, stressing the individualized nature of treatment
25:28: Dr. Blumenfeld encourages patients to be proactive in seeking early treatment
Contact Our Hosts:
Joe Coe, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Shelby, a singer-songwriter navigating life with migraine and dysautonomia. Together, they delve into how chronic pain influences both personal and artistic endeavors. Shelby shares insights on how her condition has shaped her music career and the comfort she finds in her creative expression, offering listeners a window into the everyday triumphs and struggles faced by those living with chronic conditions.
Among the highlights in this episode:
01:09: Shelby discusses how migraine has been both a destructive and constructive force in her life, emphasizing the dual nature of her experiences
02:47: The discussion turns to how migraine influenced Shelby's early life and how music became a therapeutic outlet for her
06:13: Shelby describes how she manages sound sensitivity around her performances, highlighting adjustments she makes to cope with migraine
09:30: Shelby speaks on the frustrations of navigating health insurance, expressing the challenges of securing treatment for chronic migraine
12:07: Sarah and Shelby discuss the importance of community support and understanding, particularly in managing chronic illness
14:15: Sarah and Shelby talk about the broader impact of migraine on public perception and personal identity
16:03: Shelby shares her approach to self-care, including therapy and maintaining social connections despite her chronic conditions
Contact Our Hosts:
Joe Coe, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Chandler, a chronic pain recovery coach and migraine patient, to explore the realities of living with chronic migraine and cluster headaches. Chandler shares her experience with hemiplegic migraine and how it propelled her into a life dedicated to helping others manage their pain. The episode dives into the impact of chronic pain on mental health, the importance of recognizing the mind-body connection, and practical strategies for managing daily life with chronic pain.
Among the highlights in this episode:
01:54: Chandler recounts her worst migraine attack, describing its sudden and severe impact
03:19: Sarah and Chandler discuss the variety and types of migraine attacks, including hemiplegic and vestibular migraines
07:52: Chandler explains how focusing on the mind-body connection radically improved her health
12:44: Sarah and Chandler explore the relationship between mental health and chronic pain, emphasizing the need for comprehensive treatment approaches
15:45: Chandler and Sarah discuss effective self-care strategies for managing chronic pain and migraine attacks
17:02: Sarah emphasizes the cultural pressures that often discourage taking breaks and how she learned to prioritize self-care to manage her chronic conditions effectively
19:05: Chandler reflects on the journey of embracing the mind-body connection as a transformative tool in her battle against chronic pain
Contact Our Hosts:
Joe Coe, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe is joined by renowned headache specialists Dr. Tepper and Dr. Ailani to discuss a groundbreaking shift in migraine treatment accessibility. They delve into the recent endorsement by the American Headache Society of calcitonin gene-related peptide (CGRP) blockers as the primary preventive treatment for migraines, a move that promises to simplify the patient's journey toward relief.
This discussion explores the implications for insurance and pharmacy benefit managers practices and patient care, providing hope and actionable advice for those living with migraine.
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Christa, a death doula and community care facilitator navigating the complex intersections of chronic illness and queer identity for Black, Indigenous and People of Color (BIPOC) individuals. Together, they explore Christa's journey through the debilitating impacts of migraine and endometriosis, highlighting the profound role of community care and self-advocacy in managing chronic conditions. This conversation sheds light on the resilience required to live authentically while coping with chronic pain, offering insights and solidarity to those on similar paths.
Among the highlights in this episode:
01:16: Christa highlights the significance of Pride Month and discusses the pain associated with queer history, emphasizing that existence as queer people of color with disabilities is an act of resistance
03:01: Christa describes how migraine attacks have been a longstanding issue since high school, often overlooked due to other health challenges, and particularly exacerbated by hormonal changes
06:14: Christa talks about the professional challenges posed by migraine, affecting their ability to work on screens and requiring time off, which impacted her past employment
07:01: Sarah and Christa discuss the complexities of managing multiple chronic illnesses, including the crucial timing of medication to handle migraine symptoms effectively
08:36: Christa explains how transitioning to self-employment has allowed them to manage their health better, accommodating their migraines and other chronic conditions more effectively
10:22: Christa reflects on the cultural and familial challenges of addressing chronic conditions within immigrant families, highlighting the gap between generational approaches to health and wellness
13:46: Christa discusses the evolution of their support systems and the challenges of initiating conversations about needs and support with loved ones, especially during significant life transitions
18:07: Christa discusses the importance of creating care plans, especially within the context of chronic illness and disability
22:20: Christa emphasizes the importance of workplace accommodations for chronic illnesses and advocates for better understanding and support from employers
27:36: Christa shares personal strategies for dealing with bad days due to chronic conditions, emphasizing the importance of resting and listening to one’s body
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Christopher Gottschalk, Director of Headache Medicine and the Headache Medicine Training Program at Yale University, Connecticut, live from the American Headache Society's scientific meeting. Dr. Gottschalk shares insights from a new study revealing how prolonged use of anti-CGRP drugs can reduce prodromal symptoms and the occurrence of headaches. He discusses the evolving understanding of migraine phases and the broader impacts of treatment on quality of life and cognitive function.
Join Joe and Dr. Gottschalk as they discuss these significant advancements in migraine treatment and education.
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe is live from the American Headache Society's scientific meeting with Alicia Duyvejonck, a nurse practitioner at Genesis Headache Clinic in Davenport, Iowa. Together they discuss a research poster to which they both contributed titled "Person-Centric Communications in Migraine: Delphi-Like Consensus on Best Practice." This study, conducted using the Delphi consensus model, involved headache neurologists, nurse practitioners, psychologists, and advocacy community representatives, focusing on enhancing communication between patients and health care professionals in migraine care. They emphasize the importance of person-centric communication and individualizing treatment, highlighting key recommendations for both providers and patients to improve understanding and reduce migraine stigma.
Join Joe and Alicia as they explore how effective communication is essential in managing this heterogeneous condition and fostering shared decision-making.
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe is live from the American Headache Society's scientific meeting with Dr. Mario Peres, President-Elect of the International Headache Society. Dr. Peres, hailing from São Paulo, Brazil, discusses the application of artificial intelligence (AI) in migraine diagnosis and management. They discuss how AI tools are being developed to improve diagnostic accuracy, which is crucial for effective treatment. Dr. Peres emphasizes the importance of validating these AI models to ensure they provide reliable and useful outcomes.
Join Joe and Dr. Peres as they delve into the future of migraine care, emphasizing technology's role in enhancing patient self-management and care strategies.
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Nada Hindiyeh, Director of Headache Medicine at Metrodora Institute and CMO at Haven Headache & Migraine Center, and Dr. Lauren Natbony, Founder and CEO of Integrative Headache Medicine of New York. Recorded live at the American Headache Society’s (AHS) Annual Scientific Meeting in San Diego, CA, they discuss the complex interrelations between migraine, autonomic disorders such as POTS, Ehlers-Danlos Syndrome, and Mast Cell Activation Syndrome (MCAS). They highlight the importance of a holistic approach to treatment and the innovative work being done to create special interest groups within the AHS to address these issues.
Join them as they share insights and advances in treating these interconnected conditions.
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah welcomes Katrina, a patient advocate navigating multiple conditions including migraine and endometriosis. They discuss Katrina's journey — from years of misdiagnosis to finally finding a doctor who would listen and offer effective migraine treatment options. Katrina and Sarah dive into the overlap of endometriosis and migraine advocacy, highlighting the challenges and breakthroughs along the way. This discussion provides insights into the daily realities of shared decision-making with your health care team, the journey to diagnosis, and the importance of self-advocacy.
Among the highlights in this episode:
02:05: Katrina describes the onset and progression of their migraine attacks, providing insights into the symptoms that go beyond a typical headache
03:58: Katrina shares their journey from misdiagnosis to finally getting a correct diagnosis and effective treatment plan, emphasizing the pivotal role of a neurologist
04:25: Sarah and Katrina discuss the overlap of endometriosis and migraine, and the challenges of being heard and properly diagnosed
07:26: Katrina and Sarah discuss the impact of advocacy in navigating health care and the importance of self-advocacy in chronic illness management
08:53: Katrina reflects on how their advocacy in endometriosis has empowered them in other areas such as migraine
14:41: Sarah and Katrina discuss the emotional and physical toll of chronic illness and the societal pressures that affect how people manage their health
19:11: Katrina expresses their approach to health management amidst advocacy fatigue
20:29: Closing thoughts on the importance of prioritizing personal health and the collective need for better health care understanding and support
Contact Our Hosts:
Joe Coe, Director, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Nicole, a nursing student living with migraine. Nicole shares her harrowing journey, the challenges of navigating health care, and how she turned her struggle into advocacy for herself and others. Nicole's experiences highlight the power of advocacy, the impact of stigma, and the importance of community support in living with migraine.
Join Sarah and Nicole for an episode that offers valuable insights for anyone looking to advocate for better migraine care and understanding.
Among the highlights in this episode:
01:20: Nicole recounts a severe migraine attack following a concussion in 2016, detailing the array of debilitating symptoms she experienced
02:25: Nicole discusses how educating herself about migraine, joining support groups, and learning to advocate for herself were crucial steps in managing her condition
03:50: Nicole shares practical advice on preparing for medical appointments, including keeping detailed health records and symptom notes to improve communication with health care providers
06:13: Nicole and Sarah highlight the significance of finding a community through support groups, sharing experiences, and not feeling alone in the journey with migraine
07:35: Nicole discusses the challenge of advocating for herself among family and friends and the importance of sharing personal stories to educate others about the realities of living with migraine
13:31: Nicole reflects on what motivated her to seek better treatment and care, emphasizing the role of research, therapy, and the determination to live independently despite her condition
15:26: Nicole acknowledges that despite best efforts, some people still struggle with migraine management due to the unique ways migraine affects each individual
Contact Our Hosts:
Joe Coe, Chief Value, Growth, and Therapeutic Solutions Officer, Country Manager, Canada at GHLF: jcoe@ghlf.org
Sarah Shaw, Associate Director, Diversity, Equity and Inclusion at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Sarah is joined by colleagues Kelly Gavigan and Eric Stone as they delve into the nuances of episodic migraine care. They discuss GHLF's UpEnd Migraine Project, which aims to enhance health care provider education in primary and emergency care settings for better migraine management. Through a conversation that spans personal experiences and the project's objectives, the episode sheds light on the challenges and opportunities in treatment for those living with episodic migraine.
If you are a health care provider or a patient living with episodic migraine, make sure to listen to the episode and participate in our survey. This will help more patients like you, get diagnosed and on proper treatment.
Healthcare, Nurse & ER Practitioner Survey: https://www.research.net/r/FBDYLHM
Episodic Migraine Patient Survey: https://singuser0bd3f30c.iad1.qualtrics.com/jfe/form/SV_0OGZIOGI0mmtMsm?Source=Ext
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, recorded live at Headache on the Hill, Sarah brings together a diverse group of patient advocates to share their personal stories and reasons for advocating for migraine awareness and better treatment access. The episode delves into the importance of advocacy, the need for improved health care policies, and the power of sharing one's story to break the silence and stigma surrounding chronic migraine.
Join Sarah and her guests for an inspiring episode that highlights the collective effort of the migraine community to make a lasting impact on the hill and beyond.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by Dr. Andrew Charles, Professor of Neurology and Director of the UCLA Migraine and Pain Program, as well as the current President of the American Headache Society (AHS). Together, they explore the groundbreaking updates in migraine prevention therapy, highlighting the AHS's recent position on CGRP inhibitors as a first-line treatment. Dr. Charles shares insights into the development of these migraine-specific therapies, their efficacy, and the significant impact they have on patients' lives, offering a glimpse into the future of migraine management.
Join Joe and Dr. Charles for a compelling conversation that shines a light on the latest advancements in migraine treatment and the positive changes they bring to the migraine community.
For more information, visit: https://ghlf.org/migraine/ahs-recommends-cgrp-therapies/
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Nahid Shukralla, a migraine patient and visual artist who uniquely intertwines her experiences living with migraine into her artwork. Nahid shares her journey and how chronic migraine led her back to her first love: art. Nahid also delves into her innovative approach to visualizing migraine auras through digital art, offering a rare glimpse into the visual phenomena that many with migraine experience but are seldom able to share.
Join Sarah and Nahid for an inspiring episode that bridges the worlds of art, medicine, and lived experience, providing insights and validation for those on a similar journey.
Among the highlights in this episode:
04:05: Sarah reflects on Nahid's experience, emphasizing the specific challenges and limitations that pregnant individuals face when dealing with migraine treatments, sparking a discussion on the need for safer and more effective treatment options
04:53: Nahid recounts her lifelong passion for art, and what led her from a career in medicine to embracing her true calling in the arts
07:07: Nahid shares how she pivoted careers, offering listeners insights into navigating personal and professional life with a chronic condition
08:53: Nahid discusses her inspiration for using her art to capture the dynamic nature of auras
13:35: Nahid discusses the positive feedback and validation she has received from the migraine community on Instagram
15:44: Sarah and Nahid discuss the significant impact of visual representation for those with migraine, highlighting how Nahid's art has provided a template for others to explain and validate their experiences, potentially aiding in medical and social understanding
17:26: Nahid speaks on her self-care routine and the adjustments she's made in her life to manage living with chronic migraine
19:46: Sarah and Nahid discuss the importance of openness and support from family and friends in managing chronic illness, advocating for a society that understands and accommodates the limitations of those living with conditions like migraine
Read more about Nahid: https://ghlf.org/advocacy/painting-and-animating-to-raise-migraine-awareness/
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by chronic migraine patient Taylor, to explore the intricacies of living with chronic migraine and navigating the health care system. They discuss the evolution of emergency care for migraine patients, the shifting landscape of migraine treatment, and how living in pain can affect our mental health. The episode also touches on the critical role of patients in treatment decisions, the stigma surrounding migraine, and how just being fine, is not fine when it comes to patient health.
Join Sarah and Taylor for a heartfelt conversation that underscores the importance of support, understanding, and advocacy in the migraine community.
Among the highlights in this episode:
01:33: Taylor discusses her worst migraine attack, detailing the intensity and confusion between a migraine and a stroke, emphasizing the severity of her condition and the challenges of seeking ER treatment
03:30: Sarah and Taylor discuss the stigma around migraine and the importance of education and understanding in both medical treatment and social acceptance
04:27: Taylor shares her approach to living authentically with chronic migraine, highlighting the importance of transparency in personal and professional relationships to manage expectations and foster understanding
06:44: Sarah reflects on her experience disclosing her chronic illness at work, contrasting negative and positive employer responses, underscoring the importance of supportive work environments
08:59: Taylor details her journey through the health care system, illustrating the trial and error process of finding effective migraine care
13:43: Taylor discusses her proactive role in her treatment journey, including tracking symptoms, educating herself, and advocating for better care, highlighting the importance of patient involvement in health care decisions
17:00: Taylor shares her experience with new migraine treatments and the significant improvement in her condition, emphasizing the impact of advancements in migraine medication and the importance of persistence in seeking effective treatment
20:29: The episode closes with a discussion on the interplay between chronic pain, mental health, and the importance of advocacy and education in improving outcomes for those living with migraine
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe Coe welcomes Izac Ross, Founder of the Haven Headache & Migraine Center and a patient advocate. They delve into Izac's lifelong journey with migraine, beginning with his childhood diagnosis and the challenges of dealing with the condition through various stages of life.
Izac discusses his experiences with a range of treatments, highlighting the transformative effects of newer therapies like CGRP inhibitors and Botox. The conversation also emphasizes the importance of not settling for subpar treatment, advocating for oneself in medical settings, and managing a career while coping with chronic migraine.
Among the highlights in this episode:
01:33: Izac describes the migraine he experienced the weekend prior to the recording
02:30: Izac highlights the social challenges and masking involved with invisible disabilities like migraine
03:19: Izac shares his early diagnosis at age 2, the rarity of pediatric migraine diagnoses at that time, and the challenges he faced
05:19: Izac and Joe discuss Izac's pursuit of “migraine freedom” and his experience with treatment advancements, including Botox and CGRP inhibitors
09:06: Izac emphasizes the importance of advocating for proper treatment and support
11:15: Izac discusses the importance of self-care, setting boundaries, and empowering others in a leadership role
13:59: Joe and Izac discuss the necessity of overperforming to compensate for the debilitating symptoms of migraine
15:31: Izac shares the importance of early disclosure of his condition to employers and the role of managers in providing reasonable accommodations
16:59: Izac explains the motivation and goals behind the creation of the Haven Headache & Migraine Center, emphasizing access to quality care and crisis management
19:50: Izac concludes by inviting listeners to check out the Haven Headache & Migraine Center online, discussing their clinical team, and plans for expansion
For more information go tohttps://www.havenheadache.com/
You can also find Izac on Instagram with the handle @gaywithaheadache
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe Coe welcomes Dr. Andrew Blumenfeld, Director of The Los Angeles Headache Center and a world-renowned headache specialist who helped develop the Botox injection protocol used in the pivotal migraine trials.
They delve into the complexities of migraine management, discussing recently introduced concepts like "migraine freedom" and the multimodal approach to treatment. Dr. Blumenfeld addresses the challenges in navigating patient care within the constraints of insurance companies. The conversation also sheds light on the critical role of caffeine in migraine control and explores the often-overlooked symptoms experienced between migraine attacks.
Join Joe and Dr. Blumenfeld in an informative conversation that offers new perspectives and hope for migraineurs.
Among the highlights in this episode:
02:16: Dr. Blumenfeld and Joe discuss the term "migraine freedom," its origins, and patient experiences related to it
04:21: Joe and Dr. Blumenfeld expand on controlling migraine versus curing it, and how each patient's control needs can be different
05:11: Dr. Blumenfeld explains the multimodal approach to migraine treatment, emphasizing the importance of combining treatments for better control
07:28: Dr. Blumenfeld discusses his recently published paper on the Multimodal Approach to Migraine Freedom and its significance
09:27: Dr. Blumenfeld talks about the long-term journey of migraine treatment and the shared decision-making process between doctors and patients
12:26: Joe and Dr. Blumenfeld discuss managing treatment expectations with patients, highlighting the challenges with insurance companies and the importance of shared decision-making
16:05: Joe shares his personal experience with insurance challenges in accessing effective migraine treatment
18:50: Dr. Blumenfeld talks about comorbidities and coexisting diseases that can drive headache disorders, like sleep apnea and its impact
21:15: Joe and Dr. Blumenfeld discuss caffeine's role in migraine management, its misconceptions, and guidance on its usage
26:57: Dr. Blumenfeld highlights the importance of understanding the process that providers undergo to achieve a higher level of control over migraine, including dealing with insurance companies
29:31: Dr. Blumenfeld brings up the concept of the interictal period in migraine, focusing on symptoms that persist between migraine attacks and their impact on patients
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode, Joe speaks with Dr. Anne Luebke at the European Headache Congress in Barcelona. Dr. Luebke, a researcher and Associate Professor at the University of Rochester in New York, shares insights into her work and research on vestibular migraine. She explains the challenges in treating this condition, particularly the ineffectiveness of older migraine medications in addressing vertigo symptoms.
Dr. Luebke offers hope, citing ongoing research into new therapies and emphasizes the potential need for a multi-therapy approach to effectively manage vestibular migraine.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast series produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode, Joe speaks with Dr. Franchesca Fiorito, Board Certified Neurologist & Headache Subspecialist in Puerto Rico, at the European Headache Congress in Barcelona.
Dr. Fiorito shares her extensive work in advancing headache medicine, and details her efforts in establishing headache medicine education, clinics, and a specialized headache center tailored for patient comfort. The conversation touches upon the challenges of patient education, accessing specialized care, and dealing with local insurance companies. Dr. Fiorito also discusses her efforts in fostering collaboration between neurology and rheumatology to better understand and treat pain disorders.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast series produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Miguel Lainez, Chairman of the Department of Neurology at the Hospital Clínico Universitario, and Professor of Neurology at the Catholic University of Valencia, at the European Headache Congress in Barcelona.
Dr. Miguel Lainez shares his valuable insights on key topics at this year’s congress, including medication overuse headaches and vestibular migraine. He underscores the significance of new treatments like monoclonal antibodies and highlights the importance of patient education and reducing stigma associated with migraine.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast series produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Jana-Isabel Huhn-Doll at the European Headache Congress in Barcelona. Dr. Huhn-Doll, a neurologist and pain specialist from Germany, shares insights into the use of Botox for chronic migraine treatment.
Together they discuss the PHASE III Research Evaluating Migraine Prophylaxis Therapy (PREEMPT) protocol and the 'follow the pain' approach, which offers a more individualized treatment plan by targeting specific pain areas as identified by patients.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast series produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Eyal Maoz Halevy, a Frontiers Award recipient at the American Headache Society’s Scottsdale Headache Symposium.
Dr. Eyal Maoz Halevy shares what he has found most impactful at the Symposium, and discusses his research on the role of physical activity as a vital sign (PAVS), revealing surprising insights about physical activity levels in migraine patients.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
A podcast series produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe Coe is joined by Kelly Gavigan Lorant, Director of Data Management and Analytics at GHLF, as they explore the findings from a recent patient-centered survey on migraine. Kelly also explains how GHLF's research registry, originally focused on rheumatic and musculoskeletal conditions, has expanded to include a broader spectrum of chronic diseases, including migraine. Discover the insights gained about migraine patients, their treatment paths, and how these can intersect with other chronic conditions. This episode provides a unique look into the evolving understanding and management of migraine within the chronic illness community.
Among the highlights in this episode:
01:46: Kelly explains her position at GHLF and her work with various teams
02:49: “Our research registry is a place for people to engage in research and provide information about themselves, about their condition, about their disease activity, and disease journey. And all that information contributes to research,” says Kelly
03:02: Originally focused on rheumatic and musculoskeletal conditions, GHLF’s research registry, formerly known as ArthritisPower, has now become PatientSpot, and has expanded to encompass a wider range of chronic diseases, including migraine. This expansion will allow GHLF to gather a more comprehensive understanding of how chronic conditions intersect and affect individuals
04:26: Kelly discusses the response rate of the survey and the intent to start migraine research within GHLF’s research registry, PatientSpot
05:27: Kelly discusses the types of health care providers seen by survey respondents (migraine patients) and highlights the lack of care a significant portion of the respondents received for their migraine attacks
06:39: Kelly shares more on the medications used by the survey participants, including over-the-counter medications and ice therapy
08:20: Joe and Kelly discuss potential future patient-centered research questions, exploring the intersection between chronic conditions like rheumatoid arthritis and migraine
09:17: Joe discusses the new initiative “PatientSpot” and its inclusive approach for patients with various chronic diseases, inviting research questions and participation
You can send your questions to Joe Coe at jcoe@ghlf.org
For more information, visit https://patientspot.org/ or download the PatientSpot app from your app store
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Kellie, a staunch advocate for migraine and traumatic brain injuries (TBI). Kellie walks us through her journey of living with a TBI from when she was in college to now with the critical work she is doing to provide migraine educational resources to employers and employees via Migraine at Work.
Listen in as Kellie bravely opens up about her struggles with depression and migraine and her battle of overcoming the stigma attached to seeking help for mental health issues. Kellie also shares the significance of having a supportive network and the role of education and advocacy in reshaping the narrative about migraine attacks.
Among the highlights in this episode:
01:58: Kellie recounts her worst migraine experience, highlighting the challenges of emergency care for migraine patients
03:28: Sarah and Kellie discuss the importance of having support from loved ones and their role in health care advocacy
04:24: Kellie describes her traumatic brain injury (TBI) and its impact, including her prior health history and the onset of her condition
07:03: Sarah addresses the reality of chronic illness and the need for accommodations to enable patients to achieve their goals
09:33: Kellie discusses the stigma associated with invisible illnesses and how it affects perceptions and treatment in society
10:10: Kellie shares about her involvement with the Migraine World Summit and Migraine at Work
12:56: Sarah relates her own migraine experiences at work and the commonality and benefits of openly discussing migraine issue
15:32: Kellie opens up about her struggle with depression after TBI, her resistance to acknowledging it, and the acceptance of treatment
18:54: Sarah and Kellie discuss the difficulty of seeking help for mental health, the stigma associated with it, and the importance of being gentle with oneself
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Avi, who lives with migraine and other chronic illnesses. Through his migraine journey, Avi shares with us the difficulty he and his family encountered trying to get diagnosed. Avi also breaks down the challenges he faces navigating the health care system as a trans man and non-binary person. He shares his experiences of being misgendered and deadnamed (when a transgender person is referred by their birth name after transitioning) in doctors’ offices, highlighting the need for greater gender-affirming care.
Among the highlights in this episode:
01:17: Sarah kicks off the episode by asking Avi what word he would use to describe his migraine attacks
01:58: Avi discuses the symptoms he experiences such as photophobia, aura, and nausea which people often don't associate with migraine attacks
02:43: Avi expresses the challenges and hopelessness his family faced when seeking medical help
03:12: Sarah discusses the difficulties of getting care when living with an invisible illness, especially for marginalized communities
04:34: Avi talks about his experiences as a trans man and non-binary person living with migraine attacks, and the challenges of navigating the health care system
05:38: Avi and Sarah delve into how testosterone affected Avi's migraine and the intersections of health care, gender, and chronic illness
08:00: Avi emphasizes the need for proper representation and training in health care settings, sharing personal experiences of bias
10:54: Sarah and Avi discuss the importance of representation in health care settings and how clinics can better support LGBTQIA+ patients
16:31: Sarah addresses the mental health aspects of living with chronic illnesses, emphasizing the importance of community
19:34: Sarah stresses the importance of representation and expresses hope for breaking generational boundaries
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this week’s episode of Talking Head Pain, Sarah is joined by Amanda, a migraine patient, advocate, stay-at-home parent, and educator living with multiple chronic health conditions. Join Sarah and Amanda as they dig into the ebbs and flows of being a parent living with chronic migraine, things we’ve learned from the migraine community, getting the confidence to advocate and speak up for ourselves, the importance of normalizing talks about your chronic illnesses and mental health with your family unit and finding time through self-care of dopamine searching through bird watching and memes.
Among the highlights in this episode:
01:29: Sarah kicks off the episode by asking Amanda what word she would use to describe her migraine attacks
02:44: Amanda discusses the challenges of seeking care and advocating for herself, as well as the impact of normalization of pain in families
05:24: Amanda talks about the importance of self-care and seeking help for mental health and migraine
07:26: Amanda expresses her gratitude for the online migraine community and female doctors who educate and empower patients to advocate for themselves
10:25: Sarah and Amanda discuss the interconnectedness of anxiety, migraine, and mental health
16:24: Amanda shares the challenges of being a parent with chronic illness and mental health struggles, such as depression and anxiety, as well as the importance of having open and honest conversations with her child about her illnesses
18:39: Amanda and Sarah discuss the importance of self-care and finding pockets of joy and community, even when in pain
21:58: Amanda and Sarah discuss the importance of finding joy in the small things
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this week’s episode of Talking Head Pain, Sarah is joined by Bernadette, a migraine advocate, digital creator, and somatic-informed certified educator who runs a chronic illness Instagram account called “chronicaccounts.” Bernadette is a former classroom teacher who now focuses on educating and supporting others to understand their life with migraine disease better.
Join Sarah and Bernadette as they discuss Bernadette’s journey navigating multiple misdiagnoses, leading to a delayed migraine diagnosis, pivoting from a well-loved career, and finding community. Hear how Bernadette’s migraine diagnosis journey ultimately led her to patient advocacy.
Among the highlights in this episode:
01:44: Sarah explains how the word ‘debilitating’ describes migraine pain
04:00: Bernadette explains how she struggled with fatigue and trying to keep up with her peers
07:59: Sarah details the added stigma of being a woman living with a chronic illness
10:15: Sarah discusses how access can completely change one’s chronic illness journey
12:26: Bernadette explains how understanding that migraine is a neurological condition and a disability earlier could have changed her whole life
14:38: Bernadette describes how the term ‘disability’ came with relief
17:08: Bernadette explains how she was encouraged to take her entitled sick leave in the Netherlands
18:26: Bernadette details how she began her advocacy journey
20:02: Bernadette describes how the migraine stigma is so deep that we end up gaslighting ourselves
20:38: Sarah explains how despite living through the grief of leaving a teaching career, Bernadette is still teaching, just differently
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this week’s episode of Talking Head Pain, Joe is joined by Dr. Nina Riggins, a board-certified neurologist who specializes in headache medicine and traumatic brain injury. The episode sheds lights on the intersection of migraine, weight management, and the impact of a new class of weight-loss drugs, GLP-1 agonists. Joe provides his own patient insight by sharing his personal experience with weight loss and migraine. Together, they also discuss the importance of a patient-specific plan and open communication between doctors and patients.
Among the highlights in this episode:
01:47: Dr. Riggins discusses her excitement about the conversation around lifestyle, new medications, and new ways to treat migraine and headaches, along with the approach to weight loss
02:08: Joe talks about his own struggle with weight issues and the need for a more nuanced approach when addressing weight loss or gain in patients
03:47: Dr. Riggins explains the research she presented at the American Headache Society's meeting, focusing on GLP-1 agonists and their potential effects on people with migraine
05:10: Dr. Riggins delves into the multiple ways GLP-1 agonists work, including blood pressure control and blood sugar regulation
08:21: Joe shares the unexpected effects his weight-loss journey had on his migraine and overall health
11:45: Dr. Riggins elaborates on the changes that can occur when starting GLP-1 agonists
14:14: Joe emphasizes the importance of creating shared decisions between patients and providers for a successful treatment plan
16:20: Dr. Riggins discusses how medication may affect hunger and cravings and also elaborates on the role of energy in the migraine theory
18:56: Joe brings up how calorie deficits might initially make one feel tired
21:52: Joe and Dr. Nina discuss the Spoon Theory
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this week’s episode of Talking Head Pain, Sarah is joined by Simar, a university student from Australia who lives with migraine and runs a migraine advocacy Instagram account called “studywithmigraine.”
Join Sarah and Simar as they dive into navigating life as a university student living with migraine, the challenges of getting a migraine diagnosis as a woman of color, and the importance of finding doctors who take migraine and mental health seriously. Hear from Simar as she shares her lived experiences of coping with the isolation of chronic migraine and navigating accommodations in college.
Among the highlights in this episode:
01:07: Sarah kicks off the episode by asking Simar what word she would use to describe her migraine attacks
01:23: Simar describes her ongoing struggle with refractory migraine
03:47: Simar opens up about her experience with a dismissive family doctor who doubted the severity of her condition
06:00: Simar details how she advocated for herself by seeking care from a more understanding and supportive health care professional
08:07: Sarah and Simar discuss the importance of finding health care providers who understand and take seriously both the physical and mental aspects of chronic illnesses
10:10: Simar discusses the isolation and misunderstanding she experienced in her social life as a university student
13:08: The importance of adapting to new ways of socializing and coping with the ongoing grief and overwhelming feeling associated with living with a chronic illness
17:40: Simar details the process of securing accommodations through university disability services
20:01: Sarah commends Simar for her advocacy efforts and positive impact on the migraine community
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah welcomes back guest Shruti Shivaramakrishnan, a migraine and mental health advocate, to explore the complex relationship between chronic migraine, mental health, and navigating health care systems.
Join Sarah and Shruti as they discuss the profound impact of migraine on mental health, and shed a light on the need for continued dialogue and support in the migraine community.
Among the highlights in this episode:
01:09: Shruti describes her pain levels of the day using the Stoplight Pain Scale
03:58: Shruti shares her personal struggles with mental health, migraine and feeling isolated
07:09: Sarah and Shruti discuss the power and importance of community for individuals living with chronic pain
09:31: Shruti shares her experience navigating the health care systems in India and Canada and the challenges she's encountered in both countries
13:13: Sarah highlights the importance of building a migraine toolkit and normalizing discussion around living with chronic pain and mental health issues
16:18: Sarah expresses appreciation for Shruti's representation of women of color in her comics about chronic pain and mental health, emphasizing the rarity of such representation
19:49: Shruti discusses her internal conflict over using color in her illustrations due to fears of discrimination and imposter syndrome
21:45: Sarah and Shruti explore the topic of generational trauma and how breaking this cycle of silent suffering is crucial to improve one's well being
23:34: Sarah asks Shruti about her self-care practices
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Kristyn Pocock, a headache fellow, who shares her insightful research on the impact of breast size on headache. The discussion also delves into how personal experiences can inspire significant research, such as her own experience with migraine and breastfeeding, sparking her study into this correlation.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Barbara Nye, a Neurologist, Headache Specialist, and the Program Director for the Headache Fellowship at Atrium Health Wake Forest Baptist. Recorded live at the American Headache Society’s (AHS) Annual Scientific Meeting in Austin, they discuss the latest trends and developments in headache research, including a focus on diversifying patient representation and understanding the unique experiences of different ethnicities and genders. Dr. Nye also sheds light on the AHS's ambitious plan for the next five to 10 years, with an aim to enhance headache diagnosis and management, possibly incorporating AI and genetic-based strategies.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Hida Nierenburg at the American Headache Society's meeting in Austin.
Dr. Nierenburg sheds light on the transformative potential of recent therapies in managing head pain and migraine, along with her anticipation for future breakthroughs in treatment. She also provides insight into her role as a mentor for her first fellow.
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In today's episode of Talking Head Pain, Joe delves into the personal journey of Marta Mrozek, a psychotherapy student who lives with migraine. Marta opens up about chronic migraine and her initial reluctance to accept her diagnosis. She also discusses the powerful realization about needing therapy and finding the right support system, which helped her navigate her condition.
Join us, as we explore Marta's unique insights into reimagining her life in the face of chronic migraine and her journey toward advocacy.
Among the highlights in this episode:
01:36: Marta recounts her worst migraine attack
03:25: People might be dealing with invisible struggles and pain even when they seem fine on the outside
04:10: Marta emphasizes the importance of listening to her body and seeking therapy sooner
05:33: Marta describes "performing migraine" as putting on a mask and trying to hide her pain to appear 'normal' and acceptable to others
07:06: Marta's journey to find the right therapist underscores the importance of patience and perseverance in the process of seeking help
09:49: Joe discusses the process of mourning, rediscovery, and redefining normalcy that many people with chronic diseases go through.
11:15: Marta explains her involvement with Migraine Canada and the importance of patient advocacy
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe chats with Rabia Kiani, a lifelong migraine patient. Rabia reflects on how her migraine attacks and ability to manage them have been significantly influenced by her access to various treatments across different periods of her life and geographic locations. Rabia also discusses her experiences with medication overuse, or 'rebound' headaches, due to frequent use of over-the-counter medication to keep her migraine at bay.
Among the highlights in this episode:
01:29: Rabia shares the intensity and fear of her worst migraine attack
02:53: Rabia describes the embarrassment she felt as a child suffering from migraine, and her attempts to hide her condition to blend in with her peers
04:28: Joe empathizes with Rabia's struggle and the internal conflict she experiences due to societal stigma around invisible diseases
05:42: Rabia details her journey through different stages of her life, with varying levels of access to treatment and health care, and the significant impact on her quality of life
08:53: Rabia expresses her frustration about the lack of access to some migraine treatments in Canada after experiencing their benefits abroad
11:54: Rabia reflects on her past overuse of over-the-counter medications to manage and hide her migraine
09:04: More on medication overuse headache with our guest Dr. Alan Rapoport in a past episode: https://omny.fm/shows/talking-head-pain/medication-overuse-headache-a-conversation-with-dr
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is joined by Genevieve Pharand, a lawyer and a member of the Board of Directors of Migraine Quebec. Genevieve discusses her journey from her first migraine attack at the age of 10 to the debilitating chronic migraines she began to experience in her 40s.
Genevieve discusses how her journey led her to become an advocate for fellow migraine sufferers. Tune in to listen to Genevieve’s testament to resilience and hope amidst the challenges of living with chronic pain.
Among the highlights in this episode:
01:24: Genevieve shares the experience of her first major migraine attack
02:31: Genevieve recounts the transition from episodic to chronic migraine
03:37: Joe asks about the stages of grief Genevieve went through due to her chronic migraine, shedding light on the emotional toll of the condition
05:05: Genevieve discusses her experiences with migraine treatment in Canada
06:05: How Genevieve’s advocacy work with Migraine Quebec became a source of purpose after her chronic migraine began to affect her ability to contribute to society
08:04: Joe highlights the importance of pacing and finding personal purpose when living with a chronic illness
09:04: Genevieve emphasizes the importance of listening to one's body and taking care of oneself in order to manage chronic illnesses effectively
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Sarah is joined by Judith Klausner, a migraine patient and an artist from Massachusetts with a love for small, intricate, and overlooked things. Judith’s experience of invisible disability and chronic pain plays an integral role in how she views the world and creates art. Her work has been featured in Harper’s magazine, Reader’s Digest, the Huffington Post, and NPR.
Join Sarah and Judith as they discuss the inspiration for her children’s book on migraine attacks, Noah the Narwhal: A Tale of Downs and Ups as well as creating art with chronic and mental illnesses, and the importance of rest as a form of productivity.
Among the highlights in this episode:
01:00: Sarah kicks off the episode by asking Judith what word she would use to describe her migraine attacks
01:48: Judith shares about the complexity and various aspects of migraine and recounts her worst migraine attack
02:58: Sarah emphasizes the importance of discussing how migraine attacks can impact significant life events, like a wedding
05:12: Judith shares her journey of finding a supportive community of migraine patients on Twitter and how it led her to write a children's book
08:19: Judith explains why she chose a narwhal as the protagonist of her book
09:32: Judith discusses how her art is influenced by her chronic condition, creating visual representations of her migraine attacks and turning her medical ephemera into pieces of art
11:59: Sarah and Judith discuss the importance of recognizing and celebrating the chronic illness community and how strength and beauty is often overlooked in the chronic illness community
14:14: Sarah asks what advice Judith would give to artists who have a chronic condition and who are just beginning their artistic journey
17:39: Judith shares her best self-care tips
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
On today’s episode of Talking Head Pain, Sarah is joined by chronic migraine patient D’Sena’ and Bailey, her service dog, who helps her with her chronic illnesses. D’Sena’ is also a single mother of a child with migraine attacks, and she shares with us how she supports him during these episodes.
Join Sarah and D’Sena’ as they dig into topics such as caregiving, parenting, advocacy for children, service dogs, health insurance, and discrimination related to chronic migraine and health care for women of color.
Among the highlights in this episode:
01:14: Sarah kicks off the episode by asking D’Sena’ what word she would use to describe her migraine attacks
02:21: D'Sena' shares her experience as a mom with chronic migraines while caring for her son, who also experiences migraine attacks
03:52: D'Sena' and Sarah discuss the challenges faced by parents of children with migraines and the importance of recognizing their specific needs
05:57: D'Sena' discusses the importance of recognizing migraine symptoms in children and helping them advocate for themselves
07:27: Sarah and D'Sena' talk about the different types of migraine attacks and the importance of early diagnosis and treatment
07:56: D'Sena' shares the challenges of not being believed by health care professionals
09:56: The struggle of finding the right balance of medications and working through pain for people with chronic migraines
10:48: D'Sena' shares how her experience with the migraine community and participating in events like Headache on the Hill have helped her feel more supported and informed
12:18: D'Sena' discusses the challenges of navigating the health care system and insurance companies in order to get proper migraine care
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Sarah is joined by Kate Schwab, LCSW, a somatic therapist who also happens to live with migraine. Kate uses a client-centered approach to therapy, tailoring her treatment to each individual’s unique needs and goals. Kate integrates evidence-based techniques such as cognitive-behavioral therapy (CBT), mindfulness, and psychodynamic therapy to help her clients achieve lasting change.
Join Sarah and Kate as they have a real conversation about how migraine and mental health intersect, what drew her to become a therapist, the stigma around speaking up about mental health and pain, and the importance of having an inclusive therapist that creates a safe space for those living with chronic pain like migraine.
Among the highlights in this episode:
00:58: Sarah kicks off the episode by asking Kate what word she would use to describe her migraine attacks
02:26: Kate recalls her worst migraine attack, which coincidentally was also her first one
04:50: Kate describes her allergic reaction to an anti-nausea medication she experienced while being treated for migraine at the ER
07:08: Sarah and Kate discuss the intricate connection between migraine and mental health and how patients should be considered experts on their own bodies and experiences
09:13: Kate explains her journey to becoming a migraine therapist and her emphasis on connection, disconnection, and safety in therapy
12:27: Sarah highlights the importance of having a therapist who understands and validates patients with chronic pain
17:34: Kate emphasizes the importance of building relief and connection in therapy, as people with migraine often don't receive adequate support or understanding from others
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe is joined by his colleague Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation, to discuss an exciting update for Talking Head Pain: Sarah will be joining the podcast as a co-host.
Join Joe and Sarah as they discuss the podcast’s new direction, and how they will continue to uplift the voices of the migraine community that are not always represented.
Among the highlights in this episode:
00:45: Joe kicks off the episode by sharing that Sarah will now be co-hosting Talking Head Pain
00:59: “We took some time to think about how we can better serve our community, and one of the ideas that we came up with was making it bigger than me being the singular host,” says Joe
01:34: “I feel really honored to help pass the mic, theoretically, hypothetically, to more and more patients in the migraine community,” says Sarah
02:10: Sarah discusses the direction she will be taking with the episodes she will host on Talking Head Pain
03:50: Joe explains that he will focus his interviews on health care providers, researchers, and other medical professionals and provide updates from the medical conferences he regularly attends
04:26: Sarah plans to speak with patients and to pass the mic to underserved communities that typically are not as well heard, such as the BIPOC and LGBTQ communities
04:42: If you want your story to be featured on Talking Head Pain, you can send an email to our hosts at: jcoe@ghlf.org and sshaw@ghlf.org
Contact Our Hosts:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by Dr. Nina Riggins, Director of the Headache and Traumatic Brain Injury Center at UC San Diego Health, a Neurologist, and Headache Specialist. By applying her passions for education and advocacy, Dr. Riggins is very active in the headache community and has participated in Neurology on the Hill as well as Headache on the Hill.
Join Joe and Dr. Riggins as they discuss her work providing migraine education to primary care doctors as well as her education and advocacy efforts aimed at bolstering awareness so patients can reach earlier diagnosis and achieve better management of their symptoms. Dr. Riggins also shares the latest on migraine treatment options and research advancements.
Among the highlights in this episode:
01:25: Dr. Riggins kicks off the episode by sharing her excitement with her work in the field of headache medicine
02:17: Dr. Riggins describes her work for the American Headache Society in providing education directly from headache specialists to primary care doctors
04:43: “It was amazing to me to see that Headache on the Hill this year did address pediatrics [on] kids issues with migraine… proposing [a] letter to the Department of Education to support our kids when they need extra resources in school to be successful in the long run, because migraine is not just a headache, it's a whole disorder of brain networks,” says Dr. Riggins
07:06: The challenges migraine patients face in terms of advocacy and access
09:42: Joe and Dr. Riggins discuss unmet needs for researchers, including biomarkers and precision medicine
12:08: The importance of pursuing research for long COVID, especially in the area of headache medicine
13:07: The link between autonomic dysfunction and migraine
13:42: “Some people can have these multiple headache disorders, migraine and cluster, even hoarse voice during attacks and it's because [of] this autonomic neurosystem,” says Dr. Riggins
Contact Our Host:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Susan McManus, a migraine patient and advocate who was diagnosed 20 years ago. Describing herself as a “highly functioning migraineur” when her kids were still at school, Susan’s life was turned upside down after her condition became chronic.
Join Joe and Susan as they discuss how she navigated the shift to chronic migraine, her advocacy journey, her involvement with Headache on the Hill, and what she’s learned in trying to remain active while surrounding herself with a great team of doctors.
Among the highlights in this episode:
01:13: Joe and Susan McManus kick off the episode by each sharing an analogy about how fatigue feels
02:07: Susan shares about getting diagnosed 20 years ago and how she was able to manage her condition back then while staying busy
02:54: Joe asks Susan how her family reacted as her condition shifted from episodic to chronic
04:18: Susan discusses her advocacy journey and what led her to participate in her first Headache on the Hill in 2020
05:19: Joe shares he was recently a speaker at the Migraine World Summit. You can watch his interview via the link below:
https://migraineworldsummit.com/talk/lgtbq-migraine-care-disparities/
06:13: Susan shares why she doesn’t want to think about her migraine all the time and how she is making it a point to remain active
07:25: “I'm just going to pretend I don't have migraine, and I'm going to try to get out of the house and do something every day,” says Susan
08:58: Susan discusses how she’s tried to push through her symptoms and the reality of living with chronic migraine as well as the impact on her personal and professional life
11:27: “I've created a team of doctors, and they listened to me... So that's so important because I think a lot of doctors don't listen to the patient. And that's exhausting being your own advocate,” says Susan
Contact Our Host:
Joe Coe, Director, Therapeutic Area Growth and Integration at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
On today’s episode of Talking Head Pain, Joe is joined by chronic migraine and long COVID patient Marnie Russ, Program Administrator for the National Kitten College Program (NKCP). Through her work at the Kitten program and speaking at migraine events like Headache on the Hill, Marnie has had a positive impact on both humans and our feline friends.
Join Joe and Marnie as they discuss caring for kittens, how migraine impacts relationships, and how COVID can change one’s headache.
Among the highlights in this episode:
00:32- Joe kicks off the episode by introducing today’s guest, Marnie Russ, a chronic migraine and long COVID patient and the Program Administrator of the National Kitten College Program
03:15- Marnie discusses her background working with nonprofits
03:57- Joe asks Marnie what lead her to speak at the Headache and Migraine Policy Forum to talk about migraine and long COVID
05:46- Marnie tells Joe how her romantic relationships changed when she developed chronic migraine
08:43- Joe and Marnie discuss what it means to not have the luxury to fail
10:24- Marnie talks about how COVID changed her health
13:19- During her briefing about migraine and COVID, Marnie talked about the fear and uncertainty surrounding migraine after having COVID
16:21- Marnie tells Joe about how she manages her triggers
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
On this week’s episode of Talking Head Pain, Joe is joined by Wayne Anderson, DO, FAHS, FAAN, a neurologist in San Francisco, CA. In addition to being a provider, Dr. Anderson is on the Board of Directors of the American Academy of Neurology and takes part in advocacy events like Neurology on the Hill, so that he can be a part of a chorus of healthcare providers trying to improve the lives of those living with neurological disorders.
Join Joe and Dr. Anderson as they discuss Neurology on the Hill, the challenges facing providers, and how providers can become advocates.
Among the highlights in this episode:
00:22- Joe kicks off today’s episode by introducing Dr. Wayne Anderson, a neurologist and advocate, and asks Dr. Anderson about his involvement in Neurology on the Hill
01:50- Dr. Anderson talks about the issues that Neurology on the Hill has advocated for in the past
03:18- Joe asks about the impact that Step Therapy can have on the patient experience and journey
04:41- Dr. Anderson discuss the impact Prior Authorization has on him as a physician and the reforms that may be coming
09:50- Joe asks Dr. Anderson if he thought he would be involved in policy when he started medical school
10:33- Dr. Anderson shares what excites him about the future of neurology
13:58- Dr. Anderson shares ways providers can get involved in advocacy
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Laura Laureta, a migraine patient and creator of Lit Up My Mind, a website dedicated to making resources about migraine and traumatic brain injury accessible to the community. Through this work, Laura turns the pain she’s experienced into hope for others.
Join Joe and Laura as they discuss Lit Up My Mind, being written off by doctors, and the fun of virtual game nights.
Among the highlights in this episode:
00:49- Joe kicks off the episode by introducing today’s guest, Laura Laureta, creator of Lit Up My Mind
01:25- Joe asks Laura about the process of getting a traumatic brain injury (TBI) and migraine diagnosis
03:18- Laura tells Joe about the feeling of validation she got when she went to a provider that didn’t write her off
04:18- Laura shares advice for those who are being written off by the medical system
05:16- Laura tells the story of her worst migraine attack
07:09- Joe and Laura talk about the beginnings of Lit Up My Mind and what inspired Laura to create a free resource
09:08- With Talking Head Pain being a resource featured on Lit Up My Mind, Laura tells Joe what connected her to the podcast
10:45- With the prevalence of virtual meet ups that came about from the pandemic, Laura started Brain Busters, a virtual game night for people in the TBI and migraine communities
14:01- Joe asks Laura about what it feels like to find the right treatment plan
16:25- Laura shares what she wishes people who don’t live with migraine would know about living with the disease
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
Last week, Joe attended Headache on the Hill, an advocacy event which brings migraine patients and providers to Capital Hill to share their stories with elected officials. Joe was able to meet up with Natalie Copeland, migraine patient/advocate, and Dr. Stephanie Nahas, a neurologist/advocate, who brought their stories and expertise to the nation’s capital.
Join Joe, Natalie, and Dr. Nahas as they discuss their goals for the 2023 Headache on the Hill.
Among the highlights in this episode:
00:24- Joe introduces Natalie Copeland, a migraine patient from Vermont, who tells Joe about the importance of sharing her story at Headache on the Hill
00:54- Natalie shares her connection to migraine
01:16- When meeting with lawmakers, Natalie wants them to know that migraine is more than a headache and affects the way she lives her life
01:50- Joe introduces neurologist and migraine advocate, Dr. Stephanie Nahas
02:07- Dr. Nahas talks about the importance of neurologists and providers to attend events like Headache on the Hill
02:56- As advocates and neurologists meet with lawmakers, Dr. Nahas shares what she hopes the elected officials will take away from their conversations
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
Advocating Online and on the Hill: A Conversation with Kelsey Feng
Today on Talking Head Pain, Joe is joined by Kelsey Feng, a migraine advocate and creator of the social media page, Kelsey’s Migraine. Through their work online and advocacy efforts like Headache on the Hill, Kelsey aims to end the stigma of migraine within the LGBTQ+ and East Asian communities.
Join Joe and Kelsey as they discuss Headache on the Hill, representation on social media, and the importance of increased research efforts.
Among the highlights in this episode:
01:14- Today’s guest, Kelsey Feng, kicks off the episode by telling Joe about the worst migraine attack they’ve experienced
03:11- Joe asks Kelsey about how they talk about pain and chronic disease within the Asian community
05:07- Kelsey shares how when they see chronic disease represented in social media, they do not feel represented
06:33- With Kelsey’s first Headache on the Hill approaching, Joe asks them why it is important to participate in migraine advocacy
08:33- Kelsey speaks to the importance of attending Headache on the Hill as a member of both the BIPOC and LGBTQ+ communities
10:56- Kelsey talks about the need for research on migraine within the East Asian community
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by Dr. Jono Taves, a physical therapist specializing in the treatment of headache and migraine at the Novera Headache Center. Through his work at the center, his TikTok videos, and podcast, Dr. Taves inspires and educates the migraine community.
Join Joe and Dr. Taves as they discuss the neck’s connection to migraine, advice for those nervous about seeing a physical therapist, and easy stretches to try at home
Migraine, A Pain in the Neck: A Conversation with Dr. Jono Taves
In this episode of Talking Head Pain, Joe is joined by Dr. Jono Taves, a physical therapist specializing in the treatment of headache and migraine at the Novera Headache Center. Through his work at the center, his TikTok videos, and podcast, Dr. Taves inspires and educates the migraine community.
Join Joe and Dr. Taves as they discuss the neck’s connection to migraine, advice for those nervous about seeing a physical therapist, and easy stretches to try at home
Among the highlights in this episode:
00:23- Joe introduces his guest, Dr. Jono Taves, a physical therapist specializing in migraine and headache treatment options
01:12- Dr. Taves tells Joe about the connection between migraine and the neck
04:54- Joe and Dr. Taves walk through a stretch for patients who are feeling tension in the neck
08:24- Strength training is a big part of Joe’s fitness routine, so he asks Dr. Taves for his thoughts on strength training and how those with migraine can work out without triggering an attack
12:56- Going to a physical therapist can be a stressful experience for migraine patients, so Dr. Taves gives some advice to those feeling uneasy
17:35- Dr. Taves shares what he’s learned while creating content for TikTok as well as his most popular piece
20:40- As host of The Headache Doctor Podcast, Dr. Taves tells Joe about the most interesting episode he has produced
23:31- Dr. Taves speaks to the audience about giving permission to get care for their migraine
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Today on Talking Head Pain, Joe is joined by Alan Kaplan, Founder of NDPHaware. Alan lives with New Daily Persistent Headache (NDPH) and started the organization to build community and advance research.
Join Joe and Alan as they discuss NDHP, online support groups, and the emergence of psychedelics.
Among the highlights in this episode:
01:20- Joe kicks off the episode by asking Alan Kaplan to tell the audience about New Daily Persistent Headache, NDPH, and the symptoms surrounding it
03:03- Alan shares how NDPH has affected his day-to-day life
03:54- Joe and Alan discuss the lack of information surrounding the origins of NDPH
04:39- Joe asks about the prevalence of NDPH in men
06:06- Alan talks about finding online support groups
07:18- Alan tells the story of how he decided to start NDPHaware.org
09:34- Joe and Alan discuss the emergence of psychedelics in Alan’s toolkit
11:09- Alan shares what starting a non-profit has taught him
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On today’s episode of Talking Head Pain, Joe is joined by Alicia Wolf, creator of the Instagram account, “The Dizzy Cook” and author of “The Mediterranean Migraine Diet: A Science-Based Roadmap to Control Symptoms and Transform Brain Health.”
Join Joe and Alicia in part two of their interview where they discuss the recipe for happiness, international cuisine, and meals with special meaning.
Among the highlights in this episode:
01:18- Joe kicks off part two of his interview with Alicia by asking her to share her recipe for happiness
05:42- Alicia talks about the meals and recipes that are special to her
10:56- Joe asks Alicia what region she’s traveled to has had her favorite cuisine
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On today’s episode of Talking Head Pain, Joe is joined by Alicia Wolf, creator of the Instagram account, “The Dizzy Cook” and author of “The Mediterranean Migraine Diet: A Science-Based Roadmap to Control Symptoms and Transform Brain Health.”
In part 1 of their interview, Joe and Alicia discuss getting diagnosed, the impact vestibular migraine has on relationships, and Alicia’s journey to becoming The Dizzy Cook.
Among the highlights in this episode:
01:52- Alicia Wolf, The Dizzy Cook, shares with Joe the experience of her worst vestibular migraine attack
05:53- Joe asks Alicia whether health care providers ever brushed off migraine as anxiety or stress
11:13- Alicia tells Joe about being diagnosed with vestibular migraine later in life
12:30- Joe asks Alicia about how vestibular migraine has impacted her relationships, especially with her husband
14:35- Joe and Alicia discuss the concept of her Instagram page, The Dizzy Cook
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is joined by Erica Carrasco, the founder of Achy Smile. Erica is a small business owner who creates migraine awareness apparel and merchandise, a great tool to advocate for chronic illness.
Join Joe and Erica as they discuss creating Achy Smile, Erica’s experience with physical therapy, and the pressures of trying to stick to a strict diet.
Among the highlights in this episode:
01:24- Joe kicks off the episode by asking Erica to talk about her worst migraine experience
03:02- Erica shares what inspired her to create Achy Smile
06:17- Joe and Erica discuss Erica’s journey to wellness and the process of getting in touch with her body and mind
13:21- Joe and Erica talk about the myth of “the perfect diet”
17:43- Joe and Erica share their thoughts on the relationship one can have with food
19:08- Erica talks about her experience being in a migraine diet Facebook group where the members were less than friendly
21:01- Erica tells Joe about the correlation between mental and physical pain and the journal she created to help along the way
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Kathy O’Shea, author of "So Much More Than a Headache: Understanding Migraine Through Literature.” In her book, Kathy delves into the pieces of literature that capture what it’s like to live with migraine.
Join Joe and Kathy as they discuss migraine in unexpected pieces, migraine as a literary tool, and the works that represent migraine poorly.
Among the highlights in this episode:
00:51- Joe kicks off the episode by asking Kathy what her worst migraine attack was like
02:38- Kathy tells Joe about the progress she’s seen in the treatment and understanding of migraine
03:56- Kathy and Joe talk about what motivated her to research migraine in literature for her new book
05:55- Kathy shares one of the most surprising pieces of literature that features migraine
07:14- Joe and Kathy discuss the genres that lend themselves to talking about migraine and how authors use migraine as a literary device
09:36- Joe asks Kathy about the pieces of literature that represent migraine poorly and how to combat poor representation
12:40- Kathy shares about how the book helped her and how she wants the book to help others
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In the second part of our look back at 2022, we hear previous guests talk about topics such as mental health, social media, and being a guest on Jeopardy while having vestibular migraine.
Among the highlights in this episode:
00:24- Dr. Nicole Rosendale talks about research looking into migraine and trauma in the LGBTQ+ community
2:49- Shruti tells Joe about the effect migraine has had on her mental health
05:30- Samuel Kelokates offers physical therapy tips for those living with migraine
06:25- Nicky Smith shares their experience being a contestant on Jeopardy while having vestibular migraine
08:19- Dr. Dawn Buse gives insight into the wellness journey for those living with migraine
12:02- CarmenRose explains why she started posting her injection days on social media
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this very special episode of Talking Head Pain, Joe walks us through a few of the standout moments from the past year of incredible conversations with health care providers, migraine patients, and chronic illness advocates. With more than 50 episodes released in 2022, this was a memorable year to be a part of the Talking Head Pain community. Thank you for being a member of this fantastic network!
Among the highlights in this episode:
01:22- Dr. Matthew Robbins tells Joe about the connection between migraine and COVID
04:52- Namira Islam Anani speaks about the importance of holding space as a chronic disease patient
07:30- Carl Cincinnato tells us where he finds “hopium” when faced with the hardships of living with migraine
09:32- Cannon Tekstar Hodge tells the story of how migraine affected her skyrocketing career
12:06- Dr. Alan Rapoport shares some insight into medication overuse headache
16:02- Jaime Sanders tells Joe about her experience being a woman of color in the migraine advocacy space
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is joined by Emily Klein, Professor of Education at Montclair State University, a migraine patient, and activist. Emily has lived with migraine for many years, and her patient journey echoes the experiences of many. From parenting with migraine to worrying about job performance, her story is one of perseverance and strength.
Join Joe and Emily as they discuss being an educator with migraine during the pandemic, parenting with migraine, and the importance of having the right health care team in your corner.
Among the highlights in this episode:
00:59- Joe introduces his guest for today’s episode, Emily Klein, who tells us about what her worst migraine attack was like
01:57- Emily tells Joe about what migraine took away from her before she got it under control
03:17- Joe asks Emily where she found support in the difficult moments in her journey
04:20- Emily shares her current migraine status after working with a neurologist that supported her
06:36- Joe asks Emily how long it took to get to a place where the treatment options were working and helping her live life to the fullest
11:41- Emily talks about being a mother with migraine and talking to her child about having a chronic disease
13:29- Joe asks Emily about her experience being an educator with chronic disease during the pandemic and the increased conversations surrounding disabilities
17:04- Joe and Emily discuss the triggers of migraine attacks
19:26- Dr. Peter McAllister sheds some light on triggers for migraine patients
21:00- Emily gives advice to those who have not found the right treatments options yet
23:22- Dr. McAllister shares advice for navigating the wait-and-see period
25:00- Emily talks about navigating friendships with migraine
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the European Headache Congress in Vienna, Austria talking with Dr. Messoud Ashina, Professor of Neurology at the University of Copenhagen, Denmark, and the Director of the Human Migraine Research Unit at the Danish Headache Center and Department of Neurology, Rigshospitalet Glostrup.
Join Joe and Dr. Ashina as they discuss the interictal burden of migraine and the need for continued research that gives patients hope.
Among the highlights in this episode:
00:48- Joe introduces his guest, Dr. Messoud Ashina, Professor of Neurology at the University of Copenhagen, who shares the discussion of the interictal burden of migraine at the European Headache Congress
03:52- Dr. Ashina tells Joe about the need for more research so that health care providers can continue to give patients more treatment options
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the European Headache Congress in Vienna, Austria talking with Dr. Brad Torphy, Managing Director of the Chicago Headache Center and Research Institute.
Join Joe and Dr. Torphy as they discuss global access challenges and the need for more research on combination therapy.
Among the highlights in this episode:
00:35- Joe introduces his guest, Dr. Brad Torphy of the Managing Director of the Chicago Headache Center and Research Institute, who tells us about getting treatments in Europe versus in the United States
02:43- Dr. Torphy shares the need for more data and research surrounding Botox treatments combined with monoclonal antibodies
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the European Headache Congress in Vienna, Austria talking with Dr. Dimos Mitsikostas, Professor of Neurology at the National & Kapodistrian University of Athens.
Join Joe and Dr. Mitsikostas as they discuss his research on the nocebo effect.
Among the highlights in this episode:
00:36- Joe introduces his guest, Dr. Mitsikostas, who tells us about his career in neurology and the ongoing research on nocebo effect
03:05- Dr. Mitsikostas tells us about the importance of a positive approach when starting a new treatment
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is joined by Elena Ruiz de la Torre, Executive Director for the European Migraine and Headache Alliance (EMHA). Listen as Elena tells Joe about her career in migraine advocacy, what the EMHA does, and how she is working with European advocates to reduce migraine stigma.
Among the highlights in this episode:
00:45- Joe introduces Elena Ruiz de la Torre, who shares about her career in advocacy and tells us about the European Migraine and Headache Alliance (EMHA)
04:14- Elena shares interesting pieces of information that she is learning about at the conference
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by CarmenRose Fiallo, a migraine patient and advocate who documents her migraine journey on social media, showcasing the realities of living with a chronic disease.
Join Joe and CarmenRose as they discuss traumatic brain injuries, tips for injection days, and when to break up with your health care team
Among the highlights in this episode:
01:10- Joe kicks off the episode by asking CarmenRose to walk us through her worst migraine attack
04:38- CarmenRose discusses how migraine has impacted her life
06:21- Joe talks to CarmenRose about having a traumatic brain injury and being diagnosed with migraine
09:48- Joe asks Dr. Peter McAllister about the connection between traumatic brain injury and migraine
11:33- Dr. McAllister tells Joe about how migraine caused by traumatic brain injuries is treated
13:59- CarmenRose shares why she started sharing her injection days on social media and gives tips to the audience about how to navigate injection day
19:34- CarmenRose tells Joe about how the people in the migraine community have helped her through her migraine journey
22:24- Joe and CarmenRose talk about the frustrations of navigating the health care system
24:12- Joe asks CarmenRose to share advice on how to move on from a health care team that is not treating you effectively
26:59- To end the episode, Joe asks CarmenRose to talk about how finding the right treatment has improved her life
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is delayed at the airport. As he waits for his flight, Joe decided to connect with the community and share some tips for traveling with migraine.
Among the highlights in this episode:
00:37- Joe shares his first tip for traveling with migraine, communicate with your neurologist, headache specialist, or primary care provider
01:18- Tip number two, get a stable amount of sleep, water, and if needed, caffeine
01:37- Tip number three, get a good eye mask for the flight
01:47- Joe stresses the importance of having migraine medication in your carry on, not in checked luggage
02:00- Tip number three, eating nutritious foods while traveling
02:23- Joe shares his final tip, embrace the process
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by migraine advocate Candace Camper. Candace is the creator of an Instagram account that documents her migraine journey, as well as the ways in which her service dog, Clea, helps her manage migraine and seizures.
Listen as Joe and Candace discuss step therapy, getting prescribed injections, and how Clea plays a role in her health.
Among the highlights in this episode:
00:48- Joe starts the episode by introducing his guest, Candace Camper, who tells us about her migraine journey
03:14- Candace talks about her experience going to a neurologist for both migraine and seizures
03:42- Joe asks Candace to describe her worst migraine attack is like
06:31- Candace tells Joe about the current state of her treatment journey, including being prescribed an injectable medication
07:32- Candace shares how she had to pause treatment due to her insurance company getting in the way
09:12- Dr. Peter McAllister his perspective on insurance companies getting in the way of patients getting the medication they need
11:24- Candace tells Joe about her service dog, Clea
13:09- Joe asks Candace why she felt it was important for her to share her migraine journey and relationship with her service dog on Instagram
15:17- Candace talks about other migraine patients she’s meet who also use service dogs for migraine
16:28- Candace shares advice for people who have not found the right treatment options yet
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Annika Ehrlich, a nurse practitioner at the University of California, San Francisco Headache Center. Join Joe and Annika as they discuss her history in migraine care and the exciting topics they’re hearing about at the symposium.
Among the highlights in this episode:
00:24- Joe introduces his guest, nurse practitioner Annika Ehrlich
03:43- Annika shares her biggest takeaway from the conference that migraine patients should know
05:00- Joe and Annika discuss precision medicine for migraine patients
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Liza Smirnoff, a headache specialist at the University of Miami. Join Joe and Dr. Smirnoff as they discuss the importance of care of migraine in pregnant women and those going through gender affirming care, as well as the work she and her peers are doing in reducing the amount of monthly migraine days in adults.
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Sarah Bobker, a headache medicine specialist who works at the University of California, San Francisco and is the Associate Editor for the American Headache Society’s journal, Headache. Join Joe and Dr. Bobker as they discuss the growth of headache medicine fellowships and why this matters for patients.
Among the highlights in this episode:
00:24- Joe introduces his guest, headache medicine specialist Dr. Sarah Bobker
01:12- Dr. Bobker tells Joe fascinating topics of discussion she is hearing while at the Symposium
02:12- Joe and Dr. Bobker discuss the growth of headache fellowships and what that means for patients
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium with Dr. Adelene Jann, a headache specialist and licensed acupuncturist. They discuss how acupuncture can be used for migraine patients.
Among the highlights in this episode:
00:34- Joe introduces his guest, headache specialist and licensed acupuncturist Dr. Adelene Jann
00:55- Joe asks Dr. Jann about what she’s learning about acupuncture/complimentary procedures and migraine while at the American Headache Society
01:37- Dr. Jann shares some of the research being done surrounding migraine and acupuncture
02:13- Joe asks Dr. Jann about other non-medication alternatives that migraine patients should have on their radar
02:47- Dr. Jann speaks on the benefits of strength training for migraine patients
03:09- Dr. Jann offers the key discussion topics that have been of interest to her while attending the symposium
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Lauren Natbony, a headache specialist who tells Joe about the connection between autonomic disorders, like postural orthostatic tachycardia syndrome (POTS), and Ehlers-Danlos syndrome, and migraine.
Among the highlights in this episode:
00:37- Joe introduces his guest, headache specialist Dr. Lauren Natbony
01:46- Joe asks Dr. Natbony about how finding the connection between autonomic disorders and migraine helps patients
02:41- Dr. Natbony shares the integrative approaches she uses with patients once she understands the root cause of migraine
04:27- Joe and Dr. Natbony discuss the non-pharmacologic ways of treating migraine
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Matthew Robbins, a neurologist and headache specialist. He is presenting on the relationship between migraine and COVID.
Among the highlights in this episode:
00:24- Joe introduces Dr. Matthew Robbins, a neurologist presenting at the American Headache Society
01:14- Dr. Robbins shares his findings about the relationship between COVID and migraine
04:36- Joe and Dr. Robbins discuss whether other providers are also seeing an increase in migraine patients because of COVID
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Today on Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Jennifer Robblee, a neurologist focusing on migraine and headache disorders. Dr. Robblee, a member of the Refractory, Inpatient, and Emergency Care (RIEC)specialty interest group, is researching effective ways to treat status migrainosus (or a headache that doesn’t respond to treatment or lasts longer than 72 hours).
Among the highlights in this episode:
00:37- Joe kicks off the episode by introducing Dr. Jennifer Robblee
01:21- Dr. Robblee tells Joe about the RIEC special interest group she works closely with and the emerging research from that group
03:24- Joe asks Dr. Robblee how her research on status migrainosus will help the patient community
See omnystudio.com/listener for privacy information.
Today on Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium. He is talking to Dr. Vincent Martin, who is presenting on Ehlers-Danlos syndrome and its effect on people living with migraine.
Among the highlights in this episode:
00:30- Joe introduces Dr. Vincent Martin, a speaker at the American Headache Society conference in Scottsdale, Arizona
00:47- Dr. Martin tells Joe about his talk on Ehlers-Danlos syndrome and its relation to migraine
01:52- Joe asks Dr. Martin how the research is helping advance care for patients
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Winnielyn Bautista, a physical therapist assistant, a migraine patient, and creator of the “Healing_W_ChronicMigraine,” an Instagram account dedicated to sharing Winnielyn’s migraine journey through engaging and empowering content.
Join Joe and Winnielyn as they discuss migraine hangovers, being a young person with a chronic disease, and having migraine attacks in the workplace. We also hear from Dr. Peter McAllister as he shares his advice on migraine hangovers and navigating migraine in the workplace.
Among the highlights in this episode:
01:13- Joe starts the episode by asking Winnielyn about her worst migraine attack
03:37- As Winnielyn talks about her migraine hangovers, Joe turns to Dr. Peter McAllister to learn about what is happening during that phase
06:03- Joe asks Winnielyn to talk about her Instagram account, Healing_W_chronicmigraine, and how she turned the negatives of having migraine into positives
07:15- Joe and Winnielyn discuss some of the absurd “migraine cures” that they have been sent through social media
08:46- Winnielyns talks about functioning at work while having chronic migraine
10:28- Joe asks Winnielyn how she came to embrace being a young person with a chronic disease
10:55- Winnielyn shares what working with migraine looks like in her new job
11:37- Winnielyn talks about what migraine patients should know about physical therapy
12:58- Joe asks Winnielyn if she has ever had an attack while at work
14:42- Dr. McAllister shares his thoughts on what a migraine patients should do if they get an attack in the workplace
15:39- Joe talks to Winnielyn about how finding the right treatment has improved her life
17:04- Joe and Winnielyn discuss Winnielyn’s favorite pieces of content that she has made for Instagram
18:07- Winnielyn shares advice for people for advocating for themselves with their health care providers
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Danielle Ali, cohost of the Wellness Evolution Podcast and Senior Systems Analyst at GHLF.
In this episode, join Joe and Danielle as they talk about needle phobia and the anticipation of getting a shot. As a bonus, Danielle walks us through a breathing exercise we can use when we need an injection.
Among the highlights in this episode:
01:17- Joe opens the episode by sharing about his fear of needles
01:56- Danielle asks Joe what the biggest obstacle has been when getting an injection
03:43: Danielle shares her experience with needles, and how the people around her would offer unhelpful advice
05:16- Joe talks about the tips health care providers gave him and the importance of talking to your provider about needle phobia
08:02- Danielle shares a breathing exercise to help ease the anxieties of getting an injection, bloodwork, or any treatment that might cause anxiety
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Michelle Tracy, an advocate, writer, and migraine patient. On social media, Michelle is very open about her journey with migraine and mental health. She is known for encouraging others to signal their need for support by posting the “Bat Signal,” a visible representation of needing help.
Join Joe and Michelle as they discuss the journey of finding a therapist, signaling for help, and the impact that new treatments have had on Michelle’s wellness.
Among the highlights in this episode:
01:43- Joe starts the episode by asking Michelle what her first migraine was like
03:34- Michelle tells Joe how the negatives of being diagnosed with chronic migraine inspired her to become an advocate
05:05- Joe asks Michelle about the “Bat Signal”, a way to signal to others that you are in need of support
09:16- As Michelle brings up the topic of therapy, Joe asks her how long it took to find a therapist and modality that worked for her
11:47- Dr. Peter McAllister tells Joe about the positive effects that psychotherapy can have for migraine patients
14:07- Michelle talks about how newer medications have impacted her life
19:43- Michelle shares the experience of getting back onstage to sing with her choir after 15 years away due to migraine
24:25- Michelle shares advice to the migraine community
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by licensed psychologist Dawn Buse, PhD. She's the Clinical Professor of Neurology at Albert Einstein College of Medicine in New York City, an Assistant Professor in Clinical Health Psychology, the doctoral program at Ferkauf Graduate School of Psychology, and a current fellow of the American Headache Society. Dr. Buse specializes in helping people along the emotional side of their migraine journey, providing a support system to those who need it.
Join Joe and Dr. Buse as they discuss tips to help integrate healthy habits into daily life, and the concept that wellness is not linear.
Among the highlights in this episode:
01:20- Joe starts the episode by asking Dr. Buse what drew her into becoming a clinician in the field of migraine and stress
03:02- Joe asks Dr. Buse how practitioners and researchers talk about Cognitive Behavioral Therapy and similar interventions in a way that affirms and uplifts people with migraine
06:45- Dr. Buse talks about the emotional impact patients have when she recommends cognitive behavioral therapy and other similar modalities
10:00- Dr. Buse shares tips that can make big life changes a bit easier
15:38- Joe and Dr. Buse discuss the importance of recognizing privilege in one’s journey
19:15- Dr. Buse discusses the importance of viewing wellness and health as a dynamic journey and not a linear one
24:22- Dr. Buse shares other wellness-based practices she thinks Talking Head Pain listeners should know about
28:51- Joe and Dr. Buse discuss habit bundling as a way to integrate lifestyle changes into daily life
31:11- To close out the episode, Joe asks Dr. Buse about what excites her about the future of migraine research
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Beth Morton, a migraine patient, activist, and advocate who now runs #MigraineChat, a social media platform that creates a space for migraine patients to connect with others who live with migraine.
Listen along as Joe and Beth discuss self-advocacy and creating empowering spaces online. Beth also shares the most powerful and troublesome messages she has received since starting to run #MigraineChat.
Among the highlights in this episode:
01:07- Joe starts the episode by asking Beth to describe her worst migraine attack
03:58- Beth introduces the audience to the term ‘allodynia,’ a symptom of migraine that Beth has experienced
05:45- Beth walks Joe through her journey of becoming a migraine advocate
09:03- Joe asks Beth to share the special things that have come from hosting #MigraineChat on Twitter and various social media platforms
13:23- Joe and Beth talk about the good that can come from social media for migraine patients
15:05- Joe asks Beth to share the most inspiring and troublesome messages she’s received since starting to run #MigraineChat
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Yuri Cárdenas, a migraine patient and creator of Migraine Talk, an Instagram account dedicated to providing support to people living with migraine.
Join Joe and Yuri as they discuss the effect migraine had on Yuri’s career, the journey of finding a headache specialist, and navigating the challenges of applying for disability.
Among the highlights in this episode:
01:05- Joe kicks off the episode by asking Yuri what their worst migraine attack was like
03:27- Joe asks Yuri how migraine took away their career in interactive media
06:14- Yuri tells Joe about the journey of finding a headache specialist
06:59- Yuri talks to Joe about whether quicker access to care might have prolonged their career
08:11- Joe asks Yuri to talk about the challenges of navigating disability
11:53- Yuri talks about their Instagram account Migraine Talk, what inspired them to create it, and why it is important to have a platform
12:51- Joe asks Yuri about the importance of community for people with migraine, especially in the BIPOC community
14:11- Joe and Yuri discuss being queer in the migraine community
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On today’s episode of Talking Head Pain, Joe is joined by Matthew Kloiber, a husband, father, and migraine patient. Matthew joins Joe to talk about how switching to a plant-based diet has impacted his life, from reducing his cholesterol to helping manage his migraine attacks.
Join Joe and Matt as they discuss being a man with migraine, the effects of a plant-based diet, and the response health care providers had to his new diet.
Please note that this episode highlights Matt’s experience and is not medical advice. Make sure to work with your health care provider to find the right treatments and/or eating plan that works for you.
Among the highlights in this episode:
01:23- Joe kicks off the episode with an introduction from today’s guest, Matthew Kloiber
01:59- Joe asks Matt to describe his worst migraine attack
02:57- Matt talks about his experience of being a man with migraine
04:17- Matt tells Joe about how migraine has impacted his life
06:06- Joe and Matt discuss Matt’s post in a migraine support group, where he talked about how switching to a plant-based diet helped manage his migraine
10:24- Joe asks Matt what his health care team said regarding his switch to a plant-based diet
11:43- Joe reminds the audience that the migraine journey is an individual one, and that what might work for one person may not work for another
13:08- Matt tells Joe that the plant-based diet “cured” his migraine; Joe follows up with a question regarding the usage of the term “cured”
14:49- Matt tells Joe what he wishes people would know about living with an invisible illnesses
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On today’s episode of Talking Head Pain, Joe is joined by Hannah Frost, a migraine and Ehlers-Danlos Syndrome patient, paraclimber, and creator of the blog Climbing Through Migraine. In her blog, Hannah documents her life as a paraclimber and how she navigates the wall as someone living with chronic illness.
Join Joe and Hannah as they discuss paraclimbing with migraine, the effect migraine had on Hannah’s career, and how Hannah was able to come back to the sport with the help of community.
Among the highlights in this episode:
01:04- Joe starts the episode by asking Hannah what her worst migraine was like
02:47- Hannah talks about how migraine delayed her career and her training to be a lawyer
04:14- Joe asks Hannah about her experience as a paraclimber, and how the sport has turned negatives into positives
05:45- Hannah tells Joe about how climbing relates to her experience as someone living with chronic disease
07:28- Joe and Hannah talk about Climbing Through Migraine, a blog she created that documents her experiences as a paraclimber
09:13- Hannah shares tips for people living with migraine who want to pursue climbing
10:15- Joe asks Hannah what she does to prepare herself physically and mentally before climbing
11:04: Hannah walks Joe through how living with Ehlers-Danlos Syndrome has affected the way she climbs
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Welcome to part two of Joe’s interview with Dr. Alan Rapoport, Clinical Professor of Neurology at UCLA, past president of the International Headache Society, and the co-founder and CEO of BonTriage. In this episode, Joe and Dr. Rapoport discuss a topic very important to patients, medication overuse headache.
Among the highlights in this episode:
01:02- Joe kicks off the episode by asking Dr. Rapoport to define medication overuse headache and explain why patients need to know about it
04:22- Dr. Rapoport shares a story of a patient who came into his office who had been diagnosed with medication overuse headache
07:20- Joe and Dr. Rapoport talk about the importance of finding the right provider
09:14- Dr. Rapoport shares what he wishes neurologists and health care providers knew about medication overuse headache
14:02- Dr. Rapoport tells Joe shocking statistics about how many patients don’t continue to use their medication
17:10- Dr. Rapoport urges patients and providers to not give into the demands of insurance companies
20:20- Joe asks Dr. Rapoport about the evolving language concerning medication overuse headache
23:31- Dr. Rapoport stresses the importance of researching medication overuse headache and finding the right provider and resources
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Join Joe on this special Talking Head Pain episode featuring Sarah Shaw (Senior Manager, BIPOC Community Outreach) and JP Summers (Patient Advocate, Community Outreach Manager). Sarah and JP get real and unpack a recent article that has caused controversy in the chronic disease community.
Joe, Sarah, and JP discuss the negative impact of clickbait articles surrounding chronic illness, turning anger into action, and the balance of posting the positives and negatives of living with a chronic illness on social media
Among the highlights in this episode:
00:09- Joe starts the episode by giving background information about the article being discussed alongside GHLF colleagues Sarah Shaw and JP Summers
01:55- JP Summers describes her initial reactions to reading the article
04:03- Sarah Shaw tells Joe about her feelings when reading the article
06:06- Joe asks JP what her advice is for people who are feeling angry
09:24- Sarah relays the thoughts and feelings she has heard from the communities she talks to through her network at GHLF
13:23- Joe hears from Sarah about the balance of posting the positives and negatives of living life with a chronic disease
14:47- JP shares her final thoughts on the subject and encourages people with negative views of chronic illness patients to seek out information and perspective from patients
17:04- Sarah shares her final words on the article and offers advice to journalists writing about people living with chronic disease
18:27- Joe shares the importance of not taking shortcuts when writing articles about chronic diseases and the importance of not letting others hold power over you
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In part one of a two part episode, this week on Talking Head Pain, Joe is joined by a long time headache medicine leader Dr, Alan Rapoport, clinical professor of neurology at UCLA, the past president of the International Headache Society, and co-founder and CEO of Bon Triage, a healthcare company that helps people better understand their chronic disease. Dr. Rapoport has been in the headache field since 1979, and has seen the immense amount of progress being made to help those living with the disease.
Join Joe and Doctor Rapoport as they discuss why Dr. Rapoport decided to specialize in headache medicine, the advances being made since 1979, and the different kinds of treatments that are now available to patients.
Among the highlights in this episode:
01:29- Joe kicks off the episode by asking Dr. Rapoport why he decided to go into headache medicine
04:25- Dr. Rapoport tells Joe about the fascinating trends he has seen in research, treatments, and diagnosis
06:41- Dr. Rapoport and Joe discuss the different kinds of treatments that are available to current migraine patients
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by longtime friend Julienne Verdi, mother of 4, a migraine and ankylosing spondylitis patient, lawyer, and the Executive Director of the Association for Headache Disorders Advocacy. The Association for Headache Disorders Advocacy advocates for policy change that improves the lives of those living with migraine through events like Headache on the Hill.
Join Joe and Julienne as they discuss living with two chronic illnesses, motherhood, and the important work she is doing at the Association for Headache Disorders Advocacy.
Among the highlights in this episode:
01:13- Joe starts the episode by asking Julienne how she describes her worst migraine attack
03:15- Julienne tells Joe about living with both ankylosing spondylitis and migraine, and how the two are intertwined
04:44- Julienne talks about the challenges of getting both ankylosing spondylitis and migraine diagnosed
06:10- Joe asks Julienne about how she balances being a mother while living with migraine
08:03- Julienne tells Joe about how her former involvement in politics has influenced her work in migraine advocacy
09:18- Joe asks Julienne about what her organization is most proud of and the continued struggles moving forward
11:18- Julienne tells Joe what she is looking forward to in the upcoming year with the Association for Headache Disorders Advocacy
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Pascal Derrien, Executive Director of Migraine Ireland. Pascal shares how his team at Migraine Ireland is working to increase migraine awareness through workplace training, advocacy, and community outreach.
Join Joe and Pascal as they discuss the challenges of living with migraine in Ireland, the workplace training programs conducted by Migraine Ireland, and the cycling fundraiser Pascal started.
Among the highlights in this episode:
01:05- Joe kicks off the episode by asking Pascal how he got involved in migraine advocacy
03:12- Pascal tells Joe about the mission of Migraine Ireland and what life is like for an Irish person living with migraine
05:02- Joe asks Pascal about the unique challenges people living with migraine in Ireland face
09:24- Pascal discusses the workplace program created by Migraine Ireland and the importance of educating businesses about migraine
13:48- Pascal tells Joe about the work Migraine Ireland is doing to encourage men to be more open about having migraine
17:07- Joe asks Pascal about the cycling fundraiser held by Migraine Ireland
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Samuel Kelokates, a physical therapist specializing in treating migraine. Sam is no stranger to pain and stigma having lived with tension headaches and a visible disability. His unique experiences and education inform his physical therapy practice focused on helping people living with headache disorders.
Join Joe and Sam as they discuss non-pharmacologic options for migraine, practical physical therapy tips, and managing migraine triggers with the help of physical therapy.
Among the highlights in this episode:
01:05- Joe kicks off the episode by asking Sam to describe what a tension headache feels like
02:29- Sam tells Joe how exercise can be helpful in managing migraine triggers
05:16- Sam talks about how he has conversations about exercise with people who are in pain
07:21- Joe asks Sam about the kinds of non-pharmacological approaches that he discusses with his patients
08:53- Sam and Joe discuss how he talks with patients who received dismissive advice about their disease
10:50- Sam talks about how living with a visible disability helps him connect to those with invisible disabilities
12:00- Sam shares practical physical therapy tips for people living with migraine
14:07- Joe asks Sam to talk about how he works with patients who are using medication to help treat migraine
15:34- Sam shares that he wishes the world knew about migraine and his work in physical therapy
16:45- Sam defines cervicogenic headache and tension headache
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by Elizabeth Leroux, MD, a headache specialist, former president of the Canadian Headache Society, and founder of Migraine Canada.
Join Joe and Dr. Leroux as they talk about starting migraine associations in Canada, the obstacles providers have when getting patients their treatments, and the important work being done by Migraine Canada.
Among the highlights in this episode:
00:55- Joe kicks off the episode by asking Dr. Leroux about her own experience with migraine
03:16- Dr. Leroux tells Joe about vestibular migraine
03:51- Dr. Leroux tells why she pursued a career in neurology and what drew her into helping be a leader in Canadian migraine advocacy
06:41- Joe asks Dr. Leroux what challenges patients face when trying to access treatments, and how much time is spent advocating for patients
08:58- Joe and Dr. Leroux talk about the mountains of paperwork one needs to complete in order to get proper care
13:49- Dr. Leroux shares what is exciting her the most about the work Migraine Canada is accomplishing
16:38- Joe asks Dr. Leroux to share what she wants people around the world to know about migraine and related diseases
21:22- Joe tells Dr. Leroux about a recent migraine attack, that without the proper treatment, would have had him out for a day or two
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
On this episode of Talking Head Pain, Joe is joined by Dr. Nicole Rosendale, a neurologist and principal researcher of a study called Migraine, Migraine Disability, Trauma and Discrimination in Sexual and Gender Minority Individuals. Joe and Dr. Rosendale discuss the link between trauma and migraine, research as a form of activism, and the future of LGBTQ+ migraine research.
Among the highlights in this episode:
01:19- Dr. Rosendale opens the episode by introducing the research she conducted on migraine in the LGBTQ+ community
02:31- Dr Rosendale tells Joe about the connection between migraine severity and trauma and discrimination for people in the LGBTQ+ community, as well as issues getting access to proper migraine care and treatments
04:51- Joe asks Dr. Rosendale about the distinction between chronic and episodic migraine in the research
06:26- Dr. Rosendale gives the definition of trauma that her and her colleagues used
09:46- Dr. Rosendale tells Joe about why she got into neurology and why pioneering research in the LGBTQ+ community is vital
11:52- Joe and Dr. Rosendale discuss the role of research as an important part of activism
13:23- Joe asks Dr. Rosendale how the research in migraine and LGBTQ+ patients can help her fellow health care providers
15:15- Dr. Rosendale tells Joe what direction future studies can go based on the foundation this study made
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Danielle Fujii, an environmental designer, migraine patient, and creator of Zden, a sleep tent designed to help people with migraine get a better night’s sleep.
Join Joe and Danielle as they talk about the kinds of environments that can trigger migraines, vacations ruined by migraine, and how Danielle came up with the idea for Zden.
Among the highlights in this episode:
01:12- Danielle describes her worst migraine experience
02:52- Joe asks Danielle about her background as an environmental designer, and how that expertise helps people living with migraine
06:05- Danielle talks about how the design changes of her local mall impact the experience of people with light sensitivity and how LED lights can be an environmental trigger
10:22- Danielle tells Joe about Zden and why she created a product specifically for migraine patients
16:36- Danielle talks to Joe about why other sleep accessories don’t work for her
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe is joined by Dr. Sara Crystal, a migraine patient, headache specialist, and Medical Director of Cove, a telemedicine service providing access to specialized care to migraine patients. Join Joe and Dr. Crystal as they discuss dismissive providers, building trust during a virtual appointment, and how being on the right treatment plan can allow you to be present for whatever life throws at you.
Among the highlights in this episode:
00:41- Joe introduces Dr. Sara Crystal, who tells us about her background and what brought her to the headache and migraine field
01:58- Dr. Crystal discusses how being a provider helps her advocate for herself as a patient
03:29- Joe recounts his experience with a dismissive provider while getting tested for COVID at an urgent care
04:29- Dr. Crystal shares advice for migraine patients from a physical therapy perspective
05:56- Joe asks Dr. Crystal about the importance of access to telehealth and telemedicine appointments for underserved migraine patients
07:23- Dr. Crystal gives advice to both patients and providers about how to get the most out of a virtual appointment
08:37- Going to the doctor requires a lot of trust, and Dr. Crystal talks about building trust in a virtual appointment
10:16- Dr. Crystal discusses the beauty of telling your provider that the treatment plan is working and helping live better with migraine, and Joe shares a story about his treatment plan making it possible for him to be there for his family
12:25- Joe asks for advice on dealing with stressors for people who are not yet on the right treatment plan
14:35- Dr. Crystal shares what she wishes the society as a whole knows about migraine
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, host Joe Coe is joined by Namira Islam Anani, a lawyer specializing in human rights education and training and a graphic designer. While recovering from COVID in 2020, Namira noticed that her headaches were getting worse. This led her to seek care from a neurologist who opened her eyes to what she was experiencing.
Join Joe and Namira as they discuss long COVID, ableism in her profession, and the importance of creating and holding space.
Among the highlights in this episode:
00:57- Joe kicks off the episode by asking Namira about getting a migraine diagnosis in regard to long COVID
03:11- Namira talks about her experience with headache and migraine prior to her COVID infection
03:45- Namira describes the symptoms of her migraine attacks and talks about the worst attack she’s experienced
05:17- Joe asks Namira about the ability to be self-aware that she is experiencing a migraine
07:17- Joe and Namira discuss the intersection between human rights and healthcare and disability rights
10:59- Joe asks Namira to share advice for aspiring attorneys and advocates who also live with migraine
13:21- Joe and Namira talk about the pressure to change systems that were not designed for people with disability
14:52- Namira discusses the impact migraine has had on her personal life
19:11- Joe asks Namira if she sees diversity in the migraine community and in the space around COVID
24:10- Namira talks about the takeaways and wisdom she’s learned from the BIPOC community of COVID “long haulers”
26:39- Joe asks Namira about the meaning of “holding space”
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
You can find Namira’s work at https://www.namiraanani.com/
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe talks with author, journalist, and fellow at the Global Healthy Living Foundation, JP Summers. Join Joe and JP as they discuss the toll that migraine can take on independence, the experience of her child being diagnosed with migraine, and the joys of reporting from Comic Con.
Among the highlights in this episode:
00:59- JP describes her worst migraine experience
03:58- Joe asks JP about the loss she’s experienced due to migraine attacks
06:12- JP discusses the emotional and physical toll that losing her career and independence took on her
08:00- JP talks about finding purpose and putting a positive spin on her situation and the importance of finding an online community
09:02- Joe asks JP about the experience of her son being diagnosed with migraine at 10 years old
11:09- JP discusses migraine within her family and within Hispanic culture
14:28- JP talks about going reporting from Comic Con while having a migraine preparedness plan
18:42: Joe and JP have some fun talking about Marvel vs. DC, Edward or Jacob, and JP’s experience interviewing movie star Mark Ruffalo
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
This week on Talking Head Pain, Joe talks with Tom Dabertin, Executive Director and CEO of the National Headache Foundation (NHF). Tom uses his experience of having migraine since his teens to inform the work he does with NHF. Join Joe and Tom as they talk about the lack of headache specialists, being a father while dealing with migraine, and Tom’s role as the Chairman of an annual Pierogi Festival.
Among the highlights in this episode:
00:43- Tom tells the story of the first migraine he experienced
02:49- Joe asks Tom about the impact migraine had on his high school and college experience
04:09- Tom talks about Migraine University, a resource for college students
06:44- Tom talks about migraine and fatherhood
08:00- Tom tells Joe about the lack of providers who specialize in migraine and headache disorders
14:03- Joe asks Tom about what motivates him to lead the National Headache Foundation
15:26- Joe and Tom have some fun while discussing Tom’s role as Chairman of an annual Pierogi Festival
19:50- Tom shares resources available at headaches.org
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by fellow migraine advocate and friend Alicia Torborg. Alicia serves as the Executive Director of the Association of Migraine Disorders, an organization built on the pillars of research, education, and awareness.
Listen along as Joe and Alicia discuss research being conducted by AMD, the duo’s perilous journey hiking Camelback Mountain, the history behind #ShadesForMigraine, and Alicia’s most rewarding moments working in migraine advocacy.
Among the highlights in this episode:
00:56- Alicia talks to Joe about her migraine diagnosis journey
02:46- Joe asks Alicia about the work and mission of the Association of Migraine Disorders
03:38- Alicia discusses the comorbidities project recently launched by Association of Migraine Disorders
04:34- Alicia tells the story of taking Joe on a hike up Camelback Mountain with her colleagues at AMD
07:58- After being a migraine patient, Alicia reflects on the most rewarding moments during her career in migraine advocacy so far and her philosophy on changing the world
11:28- Joe asks Alicia about his favorite AMD program, #ShadesForMigraine
16:03- Alicia discusses her earliest and worst migraine attack and the potential link between adolescent trauma and migraine
19:11- Alicia ends the episode by giving excellent pieces of advice to fellow migraine patients
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this episode of Talking Head Pain, Joe is joined by Nicky Smith, a migraine and dizziness advocate who was recently featured as a contestant on the hit trivia show Jeopardy. Nicky shares their experience about having chronic migraine and dizziness as well as why it was important to discuss the conditions on the national stage. They also talk about the importance of building a strong community of migraine superheroes.
Among the highlights in this episode:
2:01: Nicky talks about the experience of being a contestant on Jeopardy
4:44: Joe and Nicky play “Category Is” and talk about their worst migraine experiences and navigating the health care system as a queer person
11:46: Nicky talks about their interest in the X-Men and the idea that people with migraine were the original superheroes
19:35: Joe asks Nicky about the messages they’ve received from migraine patients around the world after their appearance on Jeopardy
24:16: Joe closes the show by asking Nicky about behind-the-scenes drama from the set of Jeopardy
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Dr. Eric Kaiser, a professor and neurologist at the University of Pennsylvania. Learn about sleep and cannabis research presented at the American Headache Society, and the inspiring work being done to better serve LGBTQ headache and migraine patients.
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org. Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this special episode of Talking Head Pain, Joe speaks with Howard Rosen, the CEO of the American Headache Society. Learn about the history behind the American Headache Society — and how the research presented at their meeting helps patients and providers alike.
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe talks with Robert Cowan, MD, about research on chronic/episodic migraine and how access barriers harm patients.
Contact Our Host:
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
When migraine had her down for the count, Cat got back up and fought back. She drew from her martial arts training and experience living with migraine to create her non-profit Chronic Migraine Awareness, Inc. In this episode, Cat joins Joe to talk about what she’s learned during her journey and the advocacy work she does around the globe.
Some highlights in this episode:
02:38: Cat talks about how the weather triggers migraine
3:28: Cat discusses her migraine treatment journey
5:06: What is a silent migraine?
7:47: How martial arts helped prepare Cat to live with a chronic disease
11:32: Joe asks Cat about turning negatives into positives and the founding of Chronic Migraine Awareness, Inc.
14:38: The common and recurring themes Cat has found throughout 10 years of advocacy
16:22: Cat talks about ARMS, Advocates Removing Migraine Stigma, and discusses how people can be migraine advocates in everyday life
18:26: Cat directs people where to learn more about Chronic Migraine Awareness
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF:jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Managing migraine in the workplace can come with many difficulties, communicating with bosses and colleagues, managing our workload, and progressing in our careers. But it is possible to manage migraine and our careers.
In this audio guide we address a key challenge for many people with migraine—how it is affected by and affects our work and workplaces.
We provide information checked by medical professionals who specialize in migraine and other headache disorders, for this guide, we also use information from Migraine in the Workplace: What Employers and Employees Need to Know, which includes survey data about migraine from over 800 different workplaces.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
The way Jaime Sanders expresses herself is the key to managing her migraine. Whether it’s fashion, makeup, or hair, Jaime owns her unique identity, an identity which provides her an outlet for advocating for others with chronic illness. In this episode, hear why Jaime calls herself the Migraine Diva, and how it touches everything from her migraine advocacy to the need for self-care.
“I really try not to focus on what happened yesterday, or what needs to happen tomorrow,” says Jaime. “I need to reserve my energy for the 24 hours that I'm currently in.”
Among the highlights in this episode:
1:07: Jaime describes her difficult morning with migraine, as intense pressure at the back of her head
1:57: Jaime calls herself “Migraine Diva” not to glamorize migraine but to hold on to her identity
3:25: Passion and prioritizing self-care are Jaime’s tips for looking and feeling good
6:19: Applying makeup is a painful struggle due to her trigeminal neuralgia
7:22: Joe is drawn to Jaime’s energy, spirit, and wisdom
7:46: The difficulty of self-care for people with a chronic condition
9:10: “I really try not to focus on what happened yesterday, or what needs to happen tomorrow. I need to reserve my energy for the 24 hours that I'm currently in,” says Jaime
10:37: How has being a Black woman who is also a migraine patient and advocate impacted Jaime’s mental health
14:41: Jaime is retraumatized having to retell her story, specifically the trauma of dealing with implicit bias and overt racism
15:12: Jaime hopes for more diverse representation in the migraine community
19:13: Joe discusses a shift in himself by acknowledging he has “a lot of privilege,” which allows him to gain a “rich understanding of a topic”
21:22: Joe shares a story around GHLF’s commitment to Black Lives Matter
22:47: “I want to really encourage organizations to seek out the black disabled advocates,” says Jaime
27:50: Jaime describes why she always fears a backlash when advocating for equality
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF:jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Whether you have already been prescribed migraine medication, or aren’t ready to, making the appropriate lifestyle changes is essential to living well with migraine. In this audio guide, we talk about the SEEDS approach, different therapy options, and devices that modify the light you are exposed to. We also discuss the use of vitamins and supplements as a nonmedical treatment option.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To sign up to receive headache/migraine related resources, giveaways, and the latest episode releases, text the word "Headache" to 1-845-285-1563.
See omnystudio.com/listener for privacy information.
Before migraine, life was good for Cannon Tekstar. She had a big career with travel, people reporting to her, and invitations to parties. But when migraine struck, it all turned silent, including support from her so-called friends. In this episode, Cannon shares how living with hemiplegic migraine forced her to re-set her career and how she uses social media to support others living with migraine.
Among the highlights in this episode:
1:40: Cannon describes her worst migraine attacks
4:50: Role of hospital emergency rooms for people with migraine
5:56: Cannon describes migraine auras, hers being more motor and sensory
7:35: “The most common aura is a visual aura, having 20 to 30 minutes of zigzags if it's in the sensory section of the brain,” says Dr. Peter McAlister, Director of the New England Center for Neurology
8:36: Auras can be multifaceted
9:45: Cannon discusses the loss of her big career filled with travel due to migraine
13:35: There are only 700 headache specialists for the 35-40 million people diagnosed with migraine in the U.S.
13:58: “It is so unfair that so many people don't have access to medications they need,” says Cannon
15:45: Joe recalls how his insurance company continued to deny simple treatment
19:22: Importance of a headache specialist
20:40: Dr. McAlister describes why migraine attacks often get misdiagnosed as sinus infections or sinus headaches
23:09: Cannon opened a TikTok account to help educate people about migraine and counter misinformation
27:47: People forget how genetic migraine is
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF:jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
After you receive a migraine diagnosis, you may find yourself overwhelmed with the amount of potential medication options. In this audio guide, we walk you through acute and preventive treatment options, as well as introduce you to the newest medications designed specifically to treat migraine. We also discuss medication options that treat both migraine and other illnesses you may have.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To sign up to receive headache/migraine related resources, giveaways, and the latest episode releases, text the word "Headache" to 1-845-285-1563.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
It’s a revelation that reflects the depth of migraine pain. Shruti Suresh says during her worst migraine attack, she overdosed on pain meds and revealed she’d have rather die than feel the pain. Today, Shruti is a migraine advocate, shining a light on the emotional and mental health issues surrounding migraine. In this episode, Shruti talks about the systemic nature of migraine, and how we need to address all areas of health when living with chronic disease.
Among the highlights in this episode:
1:21: Shruti started an Instagram page out of frustration, to help people with migraine feel less alone
2:33: Shruti describes why she started “Migraine India”
3:24: Doctors and friends used to say Shruti was faking migraine
5:08: Dr. Peter McAlister, Director of the New England Center for Neurology, describes how early treatment of migraine is linked to better outcomes later in life
6:25: Shruti describes her worst migraine attack
6:44: “I ended up overdosing on pain meds,” says Shruti
7:38: Dr. McAlister describes medication overuse headache
8:37: “I'd rather die than feel this pain, because nobody believed that it was that bad,” revealed Shruti
9:17: Shruti describes how she got to such a low point
10:58: Shruti encourages others to reach out and talk to someone when you feel alone with migraine
12:43: Shruti describes health care in Canada
13:53: How migraine affects Shruti’s work life
17:04: How migraine affects Shruti’s life as a mother
18:14: Dr. McAlister talks about depression taking over a person with migraine
24:15: Shruti validates her migraine
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
The first step to proper treatment is getting a diagnosis. In this audio guide, we explore the importance of a proper diagnosis, how to get diagnosed, the causes and triggers of headache, and barriers to health care.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To sign up to receive headache/migraine related resources, giveaways, and the latest episode releases, text the word "Headache" to 1-845-285-1563.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
Living with migraine as a teenager can be complicated. You’re often misunderstood, teachers wonder if you’re lazy, fellow students question accommodations. In this episode, meet Ellie Donner-Klein, a young professional whose own experience dealing with migraine and getting a proper diagnosis as a teen propelled her to now advocate on behalf of others navigating life with migraine.
Some highlights in this episode:
2:03: During her job interview, Ellie shared that she has chronic migraine and found support
3:05: Ellie describes her journey from diagnosed with migraine at 15 years old to advocating
4:09: The challenges facing a migraine advocate
5:49: Our host Joe is conducting this interview with migraine
6:25: Ellie describes her worst migraine
8:11: As a teenager, Ellie saw 10 doctors before being properly diagnosed
9:28: Ellie shares the polarization in school of some people understanding what she was going through while others didn’t
11:47: Ellie’s advice for navigating student life with migraine
12:38: Migraine is a medical condition and people should be afforded accommodations like any other chronic medical condition, says Dr. Peter McAllister, Director of the New England Center for Neurology
14:22: Defining functional disability
15:19: Ellie shares how migraine affects her Jewish faith and relationships
19:21: “I am healing the world by talking publicly about my journey,” says Ellie
21:24: Ellie describes systemic and medical racism
23:45: Dr. McAllister defines chronic versus episodic migraine
25:18: Ways to find Ellie on social media
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF:jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Welcome to the first audio guide for Talking Head Pain. In this guide, learn about the differences between headaches and migraine, as well as the important first steps to take when starting your migraine treatment journey. Symptoms of migraine, triggers, and helpful tips for keeping a migraine diary are also discussed.
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org.
Catch up on all our episodes on our website or on your favorite podcast channel.
To sign up to receive headache/migraine related resources, giveaways, and the latest episode releases, text the word "Headache" to 1-845-285-1563.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
When you think of migraine many of us don’t think of or see Black men. In this episode, meet Qasim Amin Nathari, who takes us on his migraine journey while getting deep about the intersections of race, masculinity, and faith when it comes to managing migraine.
“It's very rare that I see or hear Black men in the space. And I don't know if that's just the thing about the Black man and we don't want to talk about our pain and we have to be strong and tough, but me, I'm going to talk about it,” says Qasim. “I don't buy into the stigma that it makes you any less of a man or makes you any weaker.”
Some highlights in this episode:
1:28: “For me a good day is when I'm at least able to function enough to get my normal day-to-day routine done,” says Qasim
2:13: Qasim describes his worst migraine attack
4:24: The emergency room “is no place for a person with migraine disease,” says Dr. Peter McAlister
7:50: How Qasim balances advocacy with the need to be treated in the moment
9:22: The importance of having a two-way conversation with your doctor
10:05: The stigma facing a Black man with migraine
12:20: Qasim discusses why he started a hashtag on social media, #BlackMenHaveMigraineToo
12:38: Qasim befriends “The Migraine Diva”
14:19: “I'd never seen a Black person or a person of color in a migraine commercial,” says Qasim
16:18: Qasim describes being first diagnosed
18:57: Qasim talks about the intersection of migraine with his faith
21:10: How Qasim navigates spiritual practices like fasting with migraine
23:13: Dr. McAlister discusses the science behind why certain things like fasting could potentially be a migraine trigger
26:52: Qasim’s podcast "From All Aspects with Qasim Amin Nathari”
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Migraine as a child. Migraine on vacation. Migraine at work. Whatever their age and wherever they are, people around the world struggle with migraine. In this episode, we hear from a leading migraine advocate who shares his journey and how he now helps people overcome the stigma of migraine.
“I would get these periods I sort of called them like a honeymoon response, where you're so hopeful that it works that it actually does for a period of time,” says Carl Cincinnato, Executive Director of Migraine at Work and co-host for the Migraine World Summit. “But then you kind of run out of “hope-ium.” And all of a sudden you go back to your baseline of regular attacks.”
Some highlights in this episode:
:52: Listener feedback
2:28: Carl talks about having a tension headache when he contracted COVID
3:37: Joe’s experience getting a headache after receiving a booster shot
5:03: Carl describes the first sign of migraine when he was playing sports
6:14: Migraine forced Carl to make excuses as he dealt with isolation, pain, and depression
7:06: Carl’s journey spending money and seeing specialists to deal with his migraine
8:09: Carl turns to “hope-ium” to fight back against migraine
8:17: Migraine is “like a form of torture” for Carl
9:24: Carl found support but from other people with migraine
10:30: Carl describes his depression dealing with chronic migraine
1151: What exactly is “hope-ium”
12:43: Carl’s goal of finding the healthiest version of himself
14:07: Carl describes his first migraine attack before he was 10 years old
14:48: The turning point for Carl came during a disastrous holiday with his partner
15:17: Migraine forced Carl to leave his job
15:56: The goal at the Migraine World Summit
17:37: A personal lesson for Carl
18:37: A major challenge is dealing with the stigma of migraine, especially at work
20:42: Advocacy at work in the migraine community
Contact Our Host
Joe Coe, Director, Education and Digital Strategy at GHLF:jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to TalkingHeadPain@GHLF.org
Catch up on all our episodes on our website or on your favorite podcast channel.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Although it’s been framed as a “middle-aged white woman’s disease,” migraine doesn’t discriminate; it affects one in seven people across all genders and race. But the right diagnosis is often more difficult to find for people in marginalized communities.
In the second of a two-part episode, Sarah Shaw and her doctor Courtney White, MD, discuss the need to educate the medical profession, especially in Black, Brown, and low-income communities, on the many symptoms of migraine so they can better serve patients in the BIPOC and LGBTQA+ communities.
Some highlights in this episode: : 53: How Sarah found out she was having a migraine attack 2:00: “The emergency room is the worst place to go when you have a migraine attack.” — Dr. White 4:00: The younger generation of migraine patients benefit from social media 4:44: What patients with chronic illness have taught Dr. White 5:36: “The medical system is not fair for anybody, but especially for low-income people.” — Dr. White 6:35: What does a good provide- patient relationship look like? 7:12: Creating a comfortable atmosphere for patients to be able to speak up 7:58: Sarah discussing how doctors made her feel ashamed 8:24: Migraine and the healthcare system 9:44: How a podcast like ours helps people dealing with migraine in Black and Queer communities 10:19: “Migraine does not discriminate, and that even though it's been framed as a middle-aged white woman's disease, that's not the only population.” — Dr. White 11:48: Migraine disease affects men, women, non-binary people, all races, there is no discrimination
Contact Our Hosts
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
Sarah Shaw, BIPOC Patient Advocate, Community Outreach Manager: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to talkingheadpain@ghlf.org
Catch up on our previous episodes on your favorite podcast channel or at Talking Head Pain.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
As if migraine isn’t tough enough, imagine being a person in a marginalized community who must convince their doctor that their symptoms are real? Sarah Shaw went through six doctors before finding Courtney White, MD, who not only advocates for migraine patients but is one herself.
In the first of a two-part episode, Sarah and Dr. White discuss their migraine journeys, racial disparities in treatment, respect of the patient, and using social media to educate the BIPOC and LGBTQA+ communities.
“I am a neurologist and a headache specialist. I am also someone who does have migraine disease,” says Dr. White. “And I've gone through the experience of having difficulty finding a physician that would diagnose me and then treat me appropriately.”
Among the highlights in this episode: 2:39: Dr. Courtney White’s background as a neurologist 3:19: Dr. White discusses her 8 years of having migraine disease 4:16: As a Black woman, Sarah discusses finding a safe place to have her migraine pain believed 5:23: How patients benefit from Dr. White’s Tik Tok videos 6:29: Sarah discusses how previous doctors haven’t treated her with respect 7:35: Healthcare disparities in the Queer community 9:32: Sarah used to be called “a problem patient” 10:39: “What matters is that you're in pain, and you deserve to be treated equally” — Dr. White 10:56: No patient caused their disease 11:48: “We’re doctors, but we’re also human” — Dr. White 13:04: What is the most pressing educational need for the migraine community? 14:35: Should you Google search your migraine symptoms? 15:25: Dr. White’s biggest reason for starting Tik Tok videos
Contact Our Hosts
Joe Coe, Director, Education and Digital Strategy at GHLF: jcoe@ghlf.org
Sarah Shaw, BIPOC Patient Advocate, Community Outreach Manager: sshaw@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to talkingheadpain@ghlf.org
Catch up on our previous episodes on your favorite podcast channel or at Talking Head Pain.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
In this EXTRA episode, host Joe Coe welcomes renowned migraine specialist, author and podcast host Dr. Lindsay Weitzel. Lindsay describes her worst migraine attack, strategies for coping with migraine attacks and minimizing their severity, and how living with migraine affects family dynamics.
“You find yourself saying, ‘oh my God, I’m going to die, I’m going to die.’ You need to turn that around because your thoughts are nerve signals just like your pain,” says Dr. Lindsay Weitzel.
Among the highlights in this episode:
3:24 – Lindsay describes her worst migraine episode in graphic detail
6:51 – How Lindsay helps other migraine patients
8:49 – Useful tips for getting through migraine attacks when your kids are part of the equation
14:47 – Lindsay explains why one particular episode of her podcast “Heads Up” was so popular
16:10 – Joe asks Linsday to explain how people can “create their mortar”
17:22 – “Our thoughts are like nerve signals”
18:33 – More tips for single parents dealing with migraine
Contact Our Host
Joe Coe – Director, Education and Digital Strategy at GHLF.jcoe@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to talkingheadpain@ghlf.org
Catch up on our previous season of Talking Head Pain
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe Coe, Host of Talking Head Pain, speaks with Dreama who has been battling migraine for decades.
Dreama speaks about the difficulties of managing migraine while providing for her family as a housekeeper.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Sean McEvoy joins Joe Coe, host of Talking Head Pain, to smash stereotypes surrounding migraine.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe Coe, host of Talking Head Pain, speaks with married couple Cara and Seth about dealing with migraine in their marriage.
Cara and Seth discuss the daily challenges they face as parents, professionals, and partners while managing migraine.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe Coe, host of Talking Head Pain, speaks with LGBTQI and BIPOC advocate, Sarah Reneé.
Sarah Reneé shares her experiences of navigating migraine care as a person in various marginalized communities.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe Coe, host of Talking Head Pain is joined by Lori Johnston.
Lori, Executive Vice President, Human Resources at Amgen, shares her migraine journey and discusses how HR professionals can support people living with migraine. Lori’s story teaches us that no matter who you are in the migraine and headache community, we all have similar struggles, and using our voice is one way overcome them.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe Coe, host of Talking Head Pain, speaks with former NYC Firefighter and cluster headache advocate, Joe McKay.
Joe, a retired firefighter, and 9/11 first responder, describes how he became the hero in his own personal headache nightmare. Joe’s life experiences and advocacy teach us that it is never weak to get help.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Joe Coe, host of Talking Head Pain, speaks with migraine advocate and writer Danielle Newport Fancher, about millennial culture and managing migraine.
Danielle discusses the pressures of life with migraine in the age of social media, as well as difficulties of managing a career while living with this debilitating condition. Danielle makes the call for transparent, honest conversations with others and explains the value of forging connections within in the migraine community.
Find Danielle’s work on Instagram and Twitter @MigraineWriter
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Managing migraine in the workplace can come with many difficulties, communicating with bosses and colleagues, managing our workload, and progressing in our careers. But it is possible to manage migraine and our careers.
In this audio guide we address a key challenge for many people with migraine—how it is affected by and affects our work and workplaces.
We provide information checked by medical professionals who specialize in migraine and other headache disorders, for this guide, we also use information from Migraine in the Workplace: What Employers and Employees Need to Know, which includes survey data about migraine from over 800 different workplaces.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.
Even if we find the right medication that works for us, it's crucial that we make lifestyle changes to help us best deal with migraine and other types of head pain.
In this audio guide we explore the different non-medical therapies that are available to people living with migraine and other types of head pain.
Suggestions for care, including the lifestyle changes we talk about today, are based on guidelines from the American Academy of Neurology and the American Headache Society.
See omnystudio.com/listener for privacy information.
There are more effective and safe medications for migraine treatment than ever before.
In this audio guide, we go explore medication options for people living with migraine, remember that not every medication will work for every person, and you may need to try different treatments or combinations of treatments to see what works for you.
Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society.
See omnystudio.com/listener for privacy information.
Migraine can go untreated leaving many people living with migraine putting up with the pain.
In this audio guide, we discuss getting headache disorders diagnosed so they can be properly treated. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society.
See omnystudio.com/listener for privacy information.
What is migraine? What makes it more than 'just a headache'?
In this audio guide we break down the difference between a headache and migraine. We provide information that has been checked by medical professionals specializing in the treatment of migraine. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society.
See omnystudio.com/listener for privacy information.
Talking Head Pain is a podcast that confronts head pain, head on.
Brought to you by the Global Healthy Living Foundation and hosted by migraine advocate Joe Coe, this show explores how people living with migraine, cluster headache and other types of intense pain find ways to better manage their disease.
To receive headache/migraine related resources, giveaways, and latest episode releases, text the word "Headache" to 1-845-285-1563 to sign up.
See omnystudio.com/listener for privacy information.