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Migraine Stream of Consciousness

I’m writing this with a level 6 migraine. That’s the most painful a migraine has been for me in the last 11 months. Although I remember the years when the pain didn’t drop below a 7, regularly hit 8 and 9, and was sometimes so severe I tempted fate and rated the pain a 10, I don’t remember what the pain actually felt like. That’s one of the courtesies of the human body — an inability to remember severe pain. So when I rate my pain a 6, I know it hurts a lot, but also recognize that it can be, and has been, much worse.

In some ways, level 6 pain is more difficult for me to endure than higher pain levels because I’m still fully present. At level 7 and higher I dissociate; I stop being present with the pain. It’s like I leave my body and numb out for a while. I also become less coherent, sometimes even incoherent.

It’s strange to me to be writing a post when I’m at my current maximum pain level. I’m used to associating maximum pain with an inability to think. My thoughts aren’t entirely clear and I’ll likely find mistakes in this post when I read it when the migraine has let up. Still, the words make sense, the sentences are logical. I’m not writing “refrigerator” when I mean “shoe” and I can complete thoughts. That’s partially a function of reduced pain and part that this particular migraine isn’t causing too much cognitive impairment.

In fact, this is what I’d call a “pure pain” migraine. My other symptoms are minimal, but my head is screaming. That classic symptom of migraine pain being exacerbated by movement is also on display. Pain is bad and difficult to ignore, but pure pain migraines are much easier for me to put up with than the energy-depleting, mind-draining ones.

I’m not sure why I’m sharing a stream of consciousness about this migraine attack, other than it’s interesting to step back and examine the experience. I want to be aware of and remember it so I can go back to being grateful that level 4 is my typical max pain level.

I’m also feeling grateful for the efficacy of my current preventives. The migraine attacks are still daily, but a level 4 is nothing compared to even a 6 and is infinitely better than higher levels of pain. Someday, though, the preventives could stop working, a reality that’s never far from my mind. This migraine reminds me what my days could return to. I’m fearful and also furious.

Furious that migraine is highly stigmatized and research is massively underfunded, that every preventive medication was created for another illness and efficacy for migraine was an incidental discovery, that only one novel drug class (triptans) have ever been developed to treat migraine.  Worldwide, 18% of women and 6% of men have migraine; 36 million people in the US alone have migraine. The World Health Organization ranks migraine in the top 20 most disabling illnesses on the planet.

Where’s the effective treatment? Where’s the funding to train headache specialists? Where’s the research that will mean my 16-year-old niece isn’t debilitated by migraine 20 years from now? Who decided there’s no value in my quality of life?

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Time’s Almost Up: Comment to the FDA TODAY!

Have you told the FDA how important it is to include migraine in their new program? Tomorrow’s the final day to do so. Your participation is so crucial that I’ll beg you with lots of exclamation points and all caps: PLEASE, PLEASE SUBMIT YOUR COMMENT TODAY!!!

How? Just go to the FDA’s Prescription Drug User Fee Act Patient-Focused Drug Development Public Meeting and Request for Comments page and click the blue button that says “comment now.”

Add punch to your comment with these statistics and facts that Teri Robert compiled. In her in-person comment at an FDA meeting, she also included this startling information:

  • According to a World Health Organization analysis, migraine is responsible for more lost years of healthy life in the U.S. annually than epilepsy, multiple sclerosis, ovarian cancer, and tuberculosis combined.
  • Also according to that analysis, severe, continuous migraine is as debilitating as quadriplegia.

Migraine is unlikely to kill those of us who have it, but it sometimes feels like death would be a better alternative. Whether chronic or episodic, migraine wreaks havoc on our lives and our families. It deserves to be recognized and studied with the same resources as any other life-changing illness.