Headache on the Hill: 15 Stories of Migraine Advocacy

Welcome to Chronically Peachy, a podcast co-hosted by Sophia Fang, founder of Peachy Day, and Bernadette of @ChronicAccounts. This space exists for honest conversations that keep it real and peachy about living alongside migraine. 

We share unfiltered stories, break down migraine hot topics, and uplift community conversations with neurologists, experts, and advocates. If you’re looking for validation, accessible info, or just two friends who genuinely get it, you’re in the right place!

Key Takeaways

• Headache on the Hill is a biannual AHDA event where patients and doctors lobby Congress directly for migraine and headache policy.

• Fewer than 900 headache specialists serve 40+ million Americans with migraine, a crisis-level access gap. (AHDA)

• Three bills were on the table: the HEADACHE Act, Safe Step Act, and Connect for Health Act.

• Migraine receives only 0.2% of NIH research funding despite its enormous disease burden. (AHDA)

• "Medication overuse headache" is being replaced with the more accurate term "medication adaptation headache."

• You can advocate from your couch, calling your rep or using AHDA's pre-drafted resources counts.

Earlier this spring, Sophia traveled to Washington D.C. to attend Headache on the Hill, a biannual advocacy event organized by the Alliance for Headache Disorders Advocacy, where patients, doctors, researchers, and advocates meet directly with lawmakers at the Capitol. She came back with interview stories from 15 fellow advocates, a lot of contentment, and a body that needed several days of recovery.

What follows is a window into what that day actually looks like, who shows up, and why it matters, not just for migraine, but for every headache condition that deserves to be taken seriously.

What is Headache on the Hill?

Headache on the Hill is a biannual advocacy event organized by the Alliance for Headache Disorders Advocacy (AHDA) in which patients, neurologists, and researchers travel to Washington D.C. to meet directly with their elected representatives and make specific, targeted legislative asks on behalf of the headache and migraine community.

Once or twice a year, people who live with migraine and other headache disorders fly to Washington DC and walk the halls of the Capitol. They meet with the representatives and senators from their own states, the people who actually vote on healthcare funding and policy, and they make specific, targeted asks.

This was Sophia's third year attending. The asks this year were:

The HEADACHE Act — the first-ever bipartisan effort to create a dedicated support system and data infrastructure specifically for migraine and other headache conditions.

The Safe Step Act — which would help patients bypass the insurance step therapy delays that often stand between them and the medications they actually need. Step therapy is an insurance practice that requires patients to try and fail cheaper treatments before a doctor's preferred medication is approved. 

The Connect for Health Act — which would expand rural access to telehealth, particularly for Medicare patients who may have no nearby specialist to turn to.

These aren't abstract policy goals. They're the legislative version of conversations the migraine community has been having for years, about insurance denials, about specialist shortages, about the enormous gap between how disabling headache disorders are and how little funding they receive. 

"If you look at the disease burden in comparison to how much funding we actually receive for migraine and other headache disorders, it is not comparable." — Bernadette

How many headache specialists are there in the United States?

The specialist shortage is one of the starkest structural problems in headache care. According to the AHDA: over forty million Americans live with migraine. Fewer than nine hundred headache specialists exist in the country to treat them. Migraine receives just 0.2% of NIH funding compared to fifty percent for epilepsy. (AHDA, 2024)

"We only need three doctors. We can't pay one person for 44 people. We need help." — Sharon

The numbers aren't abstract. They're the reason some of us still don't have a diagnosis, still can't get the medication that works, still sit in waiting rooms for months trying to access a specialist who may be hours away.

The migraine advocates who showed up

Fifteen advocates gave Sophia their time over those couple of days in DC. Their stories varied enormously. What they had in common was that they'd chosen to spend their limited energy, energy that people with chronic conditions know is never guaranteed, making the trip to advocate for others. 

Keely has had migraine since she was six years old. It runs through her entire family. Her nephew was diagnosed at age three. The reason she keeps showing up isn't just for herself, it's for him, and for whoever comes after. She holds onto the possibility that by the time he's her age, things will look different. 

Isabella is in high school. She was one of the youngest advocates there, already vocal and already clear on why it matters. There's something quietly powerful about a young person showing up for this, representing both the generation that inherited this disease and the one that might finally see it understood differently. 

Heather shared something heavier. A few years ago, migraine became chronic and she lost her job, her independence, and her sense of who she was. That sent her to a very dark place. What brought her to DC was finding purpose in her pain, deciding that her voice could create change for the people behind her who haven't yet faced what she's faced. Many people in the migraine community know that place, where everything grinds to a halt, where grief sets in, where it's hard to see what any of it is for. Finding a reason to keep going, and then turning that reason outward, is no small thing. 

"I have hope I'm able to help make a change in policy along with everyone else that's here for those who are behind us, so that they don't have to go through some of what we do and have gone through." — Heather 

Sharon added statistics that land hard even when you've heard them before. Over forty million Americans live with migraine. Fewer than nine hundred headache specialists exist in the country to treat them. Migraine receives just 0.2% of NIH funding. (AHDA, 2024) 

What do doctors and healthcare advocates say about the state of headache care?

Several neurologists and people working to expand access to headache care shared what they're seeing from inside the system. A few things stood out. 

Dr. Baha named the stigma that exists within medicine itself, the perception that migraine patients are difficult and that migraine isn't worth specializing in. His point: that's simply not true, and the field is worth dedicating a career to. It's a theme that comes up in the migraine community again and again, because the shortage of headache specialists is at least partly a downstream effect of that attitude inside medical training.

"Put the Excedrin bottle down and talk to a provider who actually knows migraine." — Izac

Dr. Barbara's message was one that many in this community needed to hear years, sometimes decades, earlier: it's not normal, it's not your fault, and you can have a better quality of life. For entire families who have normalized migraine across generations, who grew up thinking this was just how headaches work, that message is still reaching people too late, or not at all. And for those on the more severe end of the spectrum who haven't found the right treatment yet, it's worth naming plainly: sometimes the right treatment simply doesn't exist yet. That's exactly why days like this one exist.

The conversation also circled back to something that comes up often in the migraine community: the shift from thinking about triggers to thinking about threshold. Triggers only exist because you have migraine disease. Without the underlying neurological condition, you could encounter every known trigger and never have an attack. Focusing relentlessly on avoiding triggers keeps people in a cycle of self-blame and restriction. Focusing on raising the migraine threshold is a fundamentally different, and healthier, orientation.

One more thing worth naming from this section: the term "medication overuse headache" is being replaced. The newer, more accurate term is medication adaptation headache,  a deliberate shift in language to remove the blame from patients who reached for the only tool they had. Of course you took the Excedrin. No one told you there was a limit. No one explained what would happen if you took it more than nine times a month. Patient education has to be more accessible for any of this to change.

What is the difference between migraine triggers and migraine threshold?

Migraine threshold is the individual neurological baseline that determines how easily an attack is triggered. Triggers only cause attacks because the underlying migraine disease exists, without that predisposition, no trigger would produce a migraine. Raising the threshold through treatment and lifestyle is a more effective strategy than avoiding triggers indefinitely.

The conversation also circled back to something that comes up often in the migraine community: the shift from thinking about triggers to thinking about threshold. Triggers only exist because you have migraine disease. Without the underlying neurological condition, you could encounter every known trigger and never have an attack. Focusing relentlessly on avoiding triggers keeps people in a cycle of self-blame and restriction. Focusing on raising the migraine threshold is a fundamentally different, and healthier, orientation.

What headache conditions beyond migraine were represented at Headache on the Hill?

Migraine, for all the advocacy it still needs, is the most visible headache condition. It's the one with the loudest community, the most research, the most social media presence. Other headache disorders exist in its shadow, with even fewer resources and even less public understanding.

Advocates living with cluster headache and trigeminal neuralgia, conditions that share some territory with migraine but are their own distinct, also shared their experiences.

Michael lives with cluster headache, often described as one of the most intense pain experiences a person can have. He talked about the strange position of trying to explain that to someone without sounding dramatic, and the sheepishness of showing up as someone episodic, feeling like maybe his experience doesn't count as much.

"Just having to explain that all the time is always tough. So the awareness I think would be helpful." — Michael

That feeling deserves a direct response: there is no pain Olympics here. Episodic doesn't mean less severe in the moment, and people who have more capacity to advocate on difficult days are a genuine asset to the whole community. Everyone's story has space in this.

Lisa lives with trigeminal neuralgia, and her husband Chris is her caregiver. He described needing to speak for her in medical settings when she literally cannot speak, and being met with suspicion in the emergency room. That moment opened up a wider conversation about how caregiving looks different depending on the condition, and how the healthcare system isn't always equipped to read those situations with cultural competency.

Bernadette added another layer: migraine is disproportionately framed as a white woman's condition, and systemic racism in healthcare means that showing up in pain and asking for help does not look the same for everyone. That reality is part of this conversation too.

For anyone looking for community beyond migraine: Clusterbusters is an organization specifically for the cluster headache community. Lisa also runs her own blog about trigeminal neuralgia at TalkingLess.com.

What is the most important advice from advocates living with chronic headache disorders? 

Sophia asked advocates across the event for the most important thing they'd learned about living alongside migraine or another headache condition. A few things came through clearly.

Find your community. This came up again and again, from multiple people. Alicia, Kristi, and Jaclyn all named it. The migraine community, online, in person, wherever you find it, offers something that's hard to get anywhere else: the experience of not having to explain yourself. Of being in a room where everyone just knows. Before finding it, many people feel alone in a way that's hard to articulate. After finding it, something shifts.

"Don't be afraid to use your voice. Nobody else is going to advocate for you." — Alicia

"We focus a lot on what migraine takes from us. I had someone turn that around and help me learn what it has given. I call them my tribe, my migraine family. They are lifelong connections that really are like family." — Kristi

"Get with a community. You don't even have to explain what you're feeling, your symptoms. We all understand. And it's so validating — because it's hard to explain yourself constantly." — Jaclyn

Stop apologizing for saying no. Mandy and Montana both landed on this, and Bernadette resonated with it deeply. Chronic overachievers, and there are a lot of them in this community, spend years saying yes to everything and apologizing when their body forces a no. Unlearning that pattern is slow, ongoing work. But capacity looks different when you live with chronic illness, and honoring that isn't weakness.

"Take care of yourself. And if people don't understand, just know that, and do what you need to do to take care of yourself." — Mandy

"I no longer apologize for when I say no. I used to say yes to every opportunity, and if I had to say no, I would make up an excuse. I don't do that anymore." — Montana

Don't be afraid to use your voice. Nobody else will advocate for you the way you can. That doesn't mean doing it alone, but it does mean being willing to show up, speak up, and ask for what you need, even when the system makes that harder than it should be.

And finally, Cheryl, whose answer to the question of what keeps her chronically peachy was a personal playlist of songs she wrote herself, rooted in the reminder that she is not what her migraine is. On a hard day, sometimes sugar honey iced tea is exactly what's needed.

"My songs remind me, my bodacious self, who I am. Not what the migraine is." — Cheryl

How can I participate in Headache on the Hill? 

Headache on the Hill happens twice a year: in-person in DC in the spring, and virtually in the fall, so there's flexibility depending on what your body and schedule allow. The event is organized by the Alliance for Headache Disorders Advocacy (AHDA).

Here's how to get involved:

1. In-person (spring): Travel to Washington D.C. and meet with your state's representatives at the Capitol.

2. Virtual (fall): Participate from home — ideal if travel isn't possible with your condition.

3. From your couch, anytime: Call your congressperson, write a letter, or use the pre-drafted resources at allianceforheadacheadvocacy.org. The bills being advocated for are ongoing. Your voice, from wherever you are, matters.

"It's a really easy way to get started in advocacy, just doing it from your couch, calling someone up, and participating in one of this year's asks." — Bernadette

Migraine care shouldn’t feel like a full-time job.

If you’re living with migraine, you deserve more than guesswork and rushed appointments.

Peachy Day is a migraine prevention app, designed to lighten your load. You can:

• Log in 1 minute a day, even during attacks

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• Make the most of your doctor’s visits

• Get migraine predictions to prevent future attacks

• Build confidence in how you understand and talk about migraine

  
  

Our team brings together 125+ years of experience as migraine patients and 50+ years as headache neurologists, including the founder of Stanford and USC’s Headache Clinic.

Download Peachy Day for free on the App Store or Google Play. 🍑