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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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A First Visit to a Headache Specialist

It’s been 12 years since my first appointment with a headache specialist. Going with Hart when he saw a specialist for the first time a few weeks ago provided an interesting perspective.

Hart had a spike in his migraine frequency significant enough that we were both worried. (We figured out it’s due to an unrelated med change. He stopped the med and his migraine frequency has dropped. Phew!) Seeing my specialist seemed like overkill, but I didn’t want to mess around with unfamiliar providers who could be lacking current knowledge. As a compromise, he saw someone in my specialist’s practice. We have both been impressed with everyone we’ve encountered in the practice and this doc was no exception.

Noteworthy information:

  • Oral meds, even the dissolving ones, have to go through the stomach before reaching maximum efficacy. Nasal sprays or injections provide the fastest possible treatment.
  • Triptans are most effective when taken before the pain is moderate or severe. All the numerous headache specialists I’ve seen have told me to take triptans as soon as I know a migraine is coming, whether there is pain or not. I recently learned that some people only find them effective if they are taken once the head pain has began. This doc confirmed that when to take triptans is an open debate, but that for most patients he recommends as early as possible, head pain or not. He did say patients can test them at different times in the early migraine (while the pain is still mild) to see when the drug is most effective for them. (The question is whether or not you’re willing to risk a worse migraine now for the potential of less severe migraines in the future.)
  • The first preventives the doctor recommended were magnesium (400 mg) twice a day and riboflavin (400 mg) once a day. Amitriptyline was next if those don’t work. I expected the doctor to recommend amitriptyline, but was pleasantly surprised that he said to try magnesium and riboflavin first.

It was a straightforward appointment that went exactly how I expected a first-time visit to a headache specialist to go for someone without chronic migraine. I just wish more people got such care from the start of their migraine treatment.

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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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Migraine and Chronic Pain in Teenagers

Having a chronic illness or chronic pain is life-altering and the stigma of invisible illness can be infuriating for anyone, but it can be especially difficult for teenagers. Sometimes the very people who are supposed to support and protect them — teachers, coaches, school nurses, doctors and even parents — don’t even believe them. (Sadly, many of you don’t have to imagine this scenario because you lived it.)

Psychology professor and Psychology Today blogger Nancy Darling, whose teen son has migraine, provides an insightful and touching take on migraine and chronic pain in teenagers.

Withdrawn, Irritable Teen? Is It A Migraine? points out that migraine often doesn’t look like migraine and that the associated absentmindedness, irritability and isolation can look like a normal “teenage funk.” She also explains why migraine looks so much like a kid trying to get out of going to school.

Children Who Go to School in Pain walks readers through a day when her son has a migraine. The most poignant part is “faking being well.” That’s right, despite the common accusation that the chronically ill are faking illness, many of us are actually faking being well. Whether you’re a teenager or adult, I’m betting that resonates with many of you; it certainly does me.

Please take a look at Dr. Darling’s posts. Even if you’re not a parent, the struggles she describes are important for everyone to be aware of. As a former teenager with chronic illness, I’m relieved to read about a topic that gets far too little attention.