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: [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.

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: [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.

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: [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.

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: [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.

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: [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.

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: [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.

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: [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.

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 Alliance for Headache Disorders Advocacy. The Alliance 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 Alliance 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 Alliance for Headache Disorders Advocacy

Contact Our Host:

Joe Coe, Director, Education and Digital Strategy 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.

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: [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.

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: [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.

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.