Creating a Space for the Migraine Community to Share Stories

The Talking Head Pain podcast is a way for me to share my story and amplify the voices of others.

For many years, I assumed that having a daily headache was normal.

I’ve lived with migraine since I was in my early teens. It wasn’t until much later that I came to understand that my head pain and symptoms like light sensitivity and dizziness were actually a complex, neurological condition.

I grew up seeing migraine portrayed in the media as something only adult women lived with. It didn’t feel like something I could relate to.

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Anyone can live with migraine

In reality, the migraine community includes all kinds of people.

The American Migraine Foundation estimates that 37 million Americans (men, women, and children) have migraine. The World Health Organization includes the disease in its top 10 most disabling.

Taking action

Barriers to care include a lack of understanding that migraine is serious and there are still too few physicians with expertise in migraine treatment. In the U.S., there are also insurance challenges like step therapy, and prior authorization that delay treatment.

I experienced these delays personally, and they can feel cruel and unfair.

This is why I’ve prioritized amplifying the voices of the migraine community in my role as Director of Education and Digital Strategy at the Global Healthy Living Foundation (GHLF). GHLF is a nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses.

We support each other while raising awareness of the needs of our patient community.

Amplifying voices

Talking Head Pain is an innovative and patient-centered podcast series that focuses on the unique and diverse experiences of the migraine community.

This audio series, part of the GHLF Podcast Network, raises awareness of migraine by sharing personal stories and offering education on science-based management strategies. We also provide short audio guides that serve as educational touchpoints for people who might not understand migraine. I often refer friends and family to these resources.

As the host of Talking Head Pain, I’ve had the opportunity to speak to people of all ages, cultural backgrounds, and gender identities, who are all at different stages of their disease journey.

I’ve spoken with the leading experts to understand management strategies including medication options and lifestyle changes like diet and exercise. It has been a rewarding experience to be able to turn my frustration with migraine into something positive.

I’ve learned so much from the guests and experts who use their time and energy to share their experiences and expertise.

What’s new this season

This year, during our extended 26-episode season 2, it became clear that our listeners were eager for more.

We’re currently getting ready to launch season 3 this fall. This season, our stories include people with unique experiences, careers, and perspectives.

Tune in to the series here.

Some of the featured stories this season include:

• CarmenRose F: a member of the LGBTQ+ community who was in a car accident that left her with a concussion & Traumatic Brain Injury (TBI)
• Winnielynn L: an East Asian physical therapy assistant who lives with chronic migraine.
• Candace C: a Black woman with chronic migraine who also happens to be a service dog handler. Candace’s dog Clea helps her with tasks and provides support during migraine attacks.
• Emily K: a professor, mom, and community activist who found that her world was getting smaller because of migraine.
• Michelle T: a writer who runs a migraine blog called The Migraine Warrior.

Peter McAllister, MD, Co-founder & chief medical officer of the New England Center for Neurology and Headache serves as a primary medical expert for the podcast.

It is a privilege to continue to amplify the stories we all need to hear. We hope that everyone in our audience can find someone whose story or advice resonates with them.