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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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
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: [email protected]
Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF: [email protected]
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected].
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
From the publisher's feed
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.
Or visit GHLF.org for more information.