I haven’t updated this blog as of late. I’ve struggled with migraines and haven’t been myself. Or maybe this is my new self. I don’t know. Cancer survivors talk about “the new normal.” I’ve been living with disabling migraines as my normal for nearly twenty years now.
I have Jekyll and Hyde migraine cycles. I’ve had an especially Hyde run in the past two weeks. Today I sit here without any pain and think about the woman—that agonized and exhausted and dispirited and edgy Ms. Hyde who’s been walking around in my scarves and sunglasses. I drank no potion for her to assume my identity, and there’s no consistency for when she’ll show up for a week or two. I have no real antidote for her arrival either, none that spirits her away to another dimension. I sit here relieved, though, just glad the imposter is taking a break for a while, for I know she could assume my identity by tomorrow morning.
Ms. Hyde looks a lot older than me for starters, partly because her face is contorted by the pain in the right half of her head and partly because she is too exhausted in the mornings to apply makeup. She awakes in my bed almost daily with half of her head skewered by some invisible sharp object. Sometimes I can dull the pain in her right eye and send her packing; sometimes I can’t. She wears sunglasses to class and looks to the world like a bitter mid-lifer with a hangover. She barely smiles at students I happen to adore. They’re enormously patient and indulgent with her. She reads emails from administrators and loses patience too quickly with their inept decision-making. Loud bells, perfume in the halls, and flickering fluorescent lights only elevate my alter ego’s potency. By the end of the school day Ms. Hyde is spent from her forays into my world. She drives my car home (using my driver’s license) where she falls into my bed and sleeps on my pillow for hours. This after kissing my husband. The nerve of the woman!
I’m not bi-polar, and I know Robert Louis Stevenson’s novella, from where we get the Dr. Jekyll/Mr. Hyde metamorphoses, certainly was not written as an allegory for a migraineur’s cycles. But there’s something to the lack of control I currently feel over my own life that parallels Stevenson’s tale. There’s likewise an echo in his story about a general public lack of understanding (or sometimes even disapproval) and resulting personal shame tied to migraines. And Dr. Jekyll increasingly could not control Mr. Hyde. In the past two weeks, that’s the way I’ve been feeling. I’m losing control over these migraines, and thus, I’m losing myself.
Migraines are different than other chronic diseases. They come with a lot of baggage in public ignorance. People are sympathetic, but often offer well-meaning advice on how to “cure” your “headaches.” Here’s a partial list of advice I’ve received from perfectly lovely people who’ve wanted to help:
“Do you have stress?” (I teach high school…ya think?)
“Use wrist bands.” (The kind with special pressure point balls on them. Useless as teats on a boar hog.)
“Drink herbal tea.” (Very popular in my part of the country. So many herbs to choose from. Cannabis? Now that might work.)
“Have you tried acupuncture?” (I did; it was relaxing but did nothing to prevent or alleviate my migraines.)
“Have you tried deep-tissue massage?” (I did; and it actually triggered migraines.)
“Try Vitamin C.” (In all forms…nothing.)
“Have you tried salty foods? Just eat a bag of chips when you start to get a migraine.” (Eating when getting a migraine is beyond me. I’m a chip slut otherwise. Enough so that I should never have migraines again.)
“Have you tried cold packs?” (Yes. It helps with alleviating the pain some, but it certainly doesn’t get rid of the pain. And that’s only after you get one.)
“Have you tried feverfew?” (Yes. Doesn’t work.)
“Vitamin B2?” (Tried it.)
“Vitamin B6?” (Tried it.)
“Vitamin B-12?” (Yes, I take it daily.)
“Peppermint oil for your temples?” (Peppermint smells better after you vomit.)
“Masturbation”….honest to god…masturbation. As if when I was getting that kind of pain in my head I’d feel like rubbing myself into ecstasy. Seriously?
“Jazz music and menthol on the temples.” (I really should introduce the last two people. I envision a great-smelling jazz club.)
“Gingersnaps.” (Might be good for mild nausea but not the kind of full hug-the-porcelain dry heave for hours kind of sick I get with migraines.)
“Ginger root.” (Ditto)
I remember one person telling me that her migraines stopped when she got a divorce. (Yikes. I love my husband so much and couldn’t have survived all these years of migraines without him. But I have met husbands that would trigger migraines. Mine isn’t in that category.)
This list of advice given me illustrates a general lack of understanding of migraines as a neurological disease. And the fact that I’ve tried so many of these things shows both my desperation and journey of understanding myself. Migraineurs fall into magical thinking. “Maybe there will be a simple thing I’ll remove from my diet and migraines will be gone forever.” This comes from anecdotes shared from some of these same people. “My friend removed all cultured dairy products and never had another migraine.” Of course, I know my worst food triggers and have eliminated them from my diet. But as a chronic migraineur, it’s just not that simple. There are so many triggers. And food that triggers a migraine on one day might not trigger one on the next.
But advice keeps coming. This last week an ex-student posted on my Facebook wall (again with the best of intentions) the following: “Have you tried juicing before? Or watched the movie "Fat, Sick and Nearly Dead"?? It's changed my life and probably my dads. There's a whole piece in there about a woman with migraines improving so I was thinking about you!”
Wow, I thought as I read it in pain. “Fat, Sick, and Nearly Dead.” What a title. I don’t really feel all that fat, but sick sure fits the bill. I’d be highly insulted if I didn’t know this young woman’s heart. I felt like posting “I have a juicer—love fresh juice, but it doesn’t do much for neurological disorders like migraines.” I didn’t.
Researchers have much to figure out, but they’re pretty sure now that migraines are largely an inherited genetic abnormality. In short—migraines are a neurological disease. Brains of those of us who get migraines, especially chronic migraines, react differently to types of stimuli, especially visual stimuli. Our brains are hypersensitive and over respond to triggers, which cause profound pain. People with “normal” brains exposed to the same stimuli or triggers have no such response. This puts migraines into a similar category of understanding as epilepsy. Both are chronic neurologic disorders with episodic manifestations. This similarity is a reason anti-seizure medicines epilepsy patients take are also preventatives given to migraineurs.
Do people with epilepsy get told by friends that juicing could change their lives? I hope to hell not. And don’t get me wrong—I know that food and a healthy life style are essential to fighting any chronic disease. But would “remedies” like vitamins and herbal teas and—God help me—masturbation be offered up to those with epilepsy? My hunch is probably not. We have a much different social story around epilepsy (although there’s a tragic history of public misunderstanding there as well).
One diet change that has helped me manage my disease in the past is an anti-inflammatory routine. It helped in prevention, but it didn’t keep me from having all migraines. I’m moving back to that process now. That helps because it pretty much takes just about any food trigger out of my diet because it takes just about all food out of my diet: no dairy, no sugar, no wheat or gluten, no alcohol (which I so rarely drink because of migraines anyway—it’s no problem), no chocolate (certainly a migraine trigger), no red meat (no problem), and heavy on Omega 3s—fish, etc., etc. I’ll really miss bread. I’ll let you know how it goes.
In the meantime, my mind wanders like Rick Perry’s during a debate. I imagine Robert Louis Stevenson’s Jekyll and Hyde somewhat differently. What if Dr. Hastie Lanyon had, instead of trying to talk Jekyll into some rational sense, offered him the following advice?
“Dr. Jekyll, what might work is to simply have some herbal tea.” Or
“Dr. Jekyll, have you tried masturbation when a metamorphosis is coming on?” Or
“I say, Dr. Jekyll old friend, have you tried juicing?”