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More Migraine and Headache Hope: 2014 American Headache Society Symposium

Energizing and encouraging are the words I’d use to describe the American Headache Society’s symposium last week/weekend. The opening remarks on Thursday morning actually made me cry. After the AHS president, Dr. Lawrence Newman, shared his heartfelt frustrations with migraine treatment and gave an impassioned plea for the 36 Million Migraine campaign, the room went dark. Dr. Newman then asked everyone to stand up with their cell phones lit to “shine a light on migraine_and_headache_hopemigraine.” This picture from the AHS Twitter feed shows a small portion of the room in this powerful moment.

The strength of the moment was reinforced when the first presenter of the day, Dr. Dawn Buse, asked everyone in the audience with migraine to stand. Three-quarters of the room stood. She then asked everyone who had a loved one with migraine to stand. I don’t believe anyone in the room remained seated.

“These people care,” I thought so many times throughout the conference. I saw so many doctors, physician assistants, nurse practitioners, nurses and psychologists who are passionate and enthusiastic about headache medicine. They are frustrated about lack of funding and the stigma of headache and migraine, but they care deeply about and are dedicated to their patients. They are excited – ahem, cautiously optimistic – about the CGRP drugs that are in development for migraine as well as the neuromodulation treatments that are on the horizon (like transcranial magnetic stimulation and vagal nerve stimulation, both of which are noninvasive and should be available to patients soon).

This is the third year I’ve attended this particular conference and the fourth headache conference I’ve been to. The energy felt different. Maybe it was because I felt better and was able to engage more, but the enthusiasm and optimism seemed stronger than I’ve noticed before. Even more encouraging was the number of people new to headache medicine, mostly fellows in their early days of specialization, who attended the conference.

Yes, research for migraine and all headache disorders is underfunded. Yes, the arsenal of treatments is still nebulous and it’s hard to pin down what might help any individual patient. Yes, the stigma is still enormous. Yes, there is still a small portion of patients for whom it is difficult to find the right treatment. But the field is making progress and it’s being led by enthused and engaged providers who truly care for patients. The number of academic headache centers is on the rise, as is the number of fellows being trained in headache medicine each year.

I was already full of hope about the future of migraine treatment. This conference reinforced that my migraine and headache hope is well-placed. The tide is turning. It’s one of the many things I’m giving thanks for this week.

Want even more hope? Watch this interview with headache specialist and researcher Peter Goadsby. It’s well worth your eight minutes. (Many thanks to  Timothy for sending me this.)

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Migraine Documentary in the Works

Out of My Head migraine documentary Kickstarter“Out of My Head,” the documentary that the Migraine Project is producing, looks to be an excellent film detailing the intricacies of migraine in an engaging, thought-provoking way. The filmmakers, director Susanna Styron and producer Jacki Ochs, have interviewed top experts in the field and many people who have migraine. The trailer includes top-notch information and illustrative descriptions of symptoms. As professional filmmakers, Styron and Ochs are working on what looks to be a high-quality film.

Neither Styron or Ochs have migraine. You may be surprised that I find this encouraging. To me, it signals a deep commitment to telling the broad story of migraine and its impact, rather than only the story of one or two people. I also think it provides an advantage in creating a film that appeals to people without migraine, which improves the chances of raising awareness. That’s not to say they’re disconnected from the emotional landscape — they’re both motivated by their love of people with migraine, including Styron’s daughter.

“Out of My Head” promises to be an excellent film that reaches a wide audience — the filmmakers have a distribution plan that includes screenings at film festivals, educational institutions, medical schools, clinics, hospitals and patient/advocacy organizations. But it’s not quite ready.

The Migraine Project is doing a Kickstarter campaign to fund the work necessary to finish the film. As I type, they’re $13,224 away from their all-or-nothing goal of $92,000, which they must reach by 6 p.m. MST on . Please watch the trailer and read about Out of My Head on Kickstarter and consider making a donation if you’re able. It’s an impressive project spearheaded by experienced professionals that I believe will result in an excellent awareness-raising migraine documentary.

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Migraine Research Excitement (With Reservations)

“This is potentially a very big deal,” I wrote about the study linking seizures and migraine in the brain. To be absolutely clear: this study’s findings could also be nothing at all. In science, a single study doesn’t prove anything other than the topic might be worth further investigation. Whether or not this particular study turns out to be pivotal research remains to be seen.

What I’m excited about is all the different ways scientists are looking at migraine. Important discoveries are announced frequently. Researchers are making connections that further the understanding of what’s happening in the brains of people with migraine, which will ultimately lead to more effective treatment.

I’m excited to see the discoveries as scientists look at migraine in new ways, but migraine research is still woefully underfunded. Part of the reason this research linking seizures and migraine caught my attention is the possibility of migraine being linked to a disease that’s perceived as real and life-changing. Seizure disorders are still stigmatized, but at least people get that they’re a brain disorder. Wouldn’t it be great if more people understood that migraine is, too? Not just for patients facing the stigma in their everyday lives, but the influence it could have on how research funding is allocated.

Migraine knowledge is fuller than it was when I began writing about it almost10 years(!) ago. I’m still hopeful about the future, but we’re taking baby steps when we could be making strides.

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Seizures, Migraine Linked in Brain, Research Finds

Seizures and migraine may be linked in the brain, according to new findings from Penn State researchers. This is potentially a very big deal and could have wide-ranging implications. I had to share the information with you, but my brain fog is too heavy to be able to explain it.

For details, take a look at the press release on the research: Link Seen Between Seizures and Migraines in the Brain. It’s scientific, but not entirely technical. I can understand it through brain fog, but can’t describe it. Popular news media will probably cover the story, so more accessible explanations should be forthcoming soon. I’ll take a stab at it when I can.

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Stem Cells for Headache, Migraine

Could stem cells reduce migraine or headache frequency and severity? Anecdotes and at least one study indicate they could be useful for migraine. They’ve also been studied for traumatic brain injury and trigeminal pain, according to James from Headache and Migraine News. Stem cells are used for a variety of inflammatory conditions, so their potential efficacy for migraine and headache is not unexpected.

Headache specialist Dr. Alexander Mauskop wrote about stem cells form migraine and headache last week, which is the first time I’d heard of the connection. He describes the research and why stem cells might be beneficial in an accessible and succinct way — far better than I possibly could. Read Stem Cells for Headache for the details.

Early stem cell research was done with cells from aborted fetuses, so it was highly controversial. Fortunately, stem cells can come from many different sources, including a patient’s own fat. Research into stem cells for a variety of conditions is exploding — I’m happy to see migraine and headache getting some attention.

Stem cells are definitely an interesting topic for research to explore, but this treatment is nowhere close to ready for widespread use. (I add that caveat because some companies who provide stem cell therapy do promote its use for migraine and headache.)