Twenty years ago I awoke beside the man who would, briefly and disastrously, become my first husband. It was a Saturday morning, and I felt strange. I had a headache, but it was unlike any I’d ever had before: tongues of pain seemed to be licking a spot directly above my left eye. The eye itself was behaving oddly: a blurred spot floated in my vision, obscuring sight. Flashes of light sluiced across my visual field like lightning.
I thought I was all right. I tried to get up and eat breakfast. I vomited. I found myself unable to speak or think clearly. Light was unbearable. Looking at wallpaper made me vomit. So did turning my head and drinking water. This went on for four days, until my future ex-husband took me to the doctor, who diagnosed my first migraine headache.
The doctor gave me a shot of dihydroergotamine, which left me writhing in agony on the office floor. Visibly frightened, he sent me to the emergency room, where I began a ritual that continues to this day: a shot of Demerol piggybacked with the antiemetic drug Phenergan.
Over time I have learned to manage my migraines, but only to a point. I’ve taken dozens of medications: many were effective for months, a few even for years, but that’s over now. Now I have a prescription for Dilaudid, usually saving me the emergency room trip. And though the headaches have mercifully lessened their grip as I age, they still have the power to paralyze.
I am coming out of one as I write this. I should not be looking at the computer: I am inviting the headache back, a lingering, uninvited guest. But as all migraineurs know — and we are a huge secret society — the same action that scrambles our neurologic function opens the doors to creativity.
In his magnificent book, A Brain Wider than the Sky, Andrew Levy succeeds in capturing something most migraineurs would find impossible to attempt: what it feels like to be in the maelstrom, the actual throes of migraine. An intermittent sufferer his entire life, at age 43, Levy got a migraine that lasted for months. He decided, as writers will, to keep a diary, to read the medical literature, and to consult the internet.
It’s difficult to explain to non-migraineurs how amazing Levy’s feat is. The vast majority of us cannot do anything during headache but lie in bed, waiting for the pain to pass. If it’s a lesser headache, we might be up and around, but fairly impaired.
During migraines I’ve been mistaken for drunk, put folded towels in the refrigerator, and am a hazard behind the wheel. I was prescribed injectable Imitrex but could not master its use, finding the cartridge and needle housing impossible to manipulate during the headache. Writing? Unimaginable. Yet Levy does, capturing the odd, ineffable thinking that occurs only in this very altered state.
Levy begins by describing his headaches, often presaged by auras, a neurological phenomenon involving visual disturbances so vivid they are hallucinatory: columns of flashing bright lights, curtains of darkness obscuring one half of the visual field, photophobia. (Interestingly, Levy never mentions clumsiness: during severe migraine I usually lose coordination. When I start dropping things, my husband tells me to take medication.)
Words swim a page, unreadable. The sun is the enemy, a leering monster. Winds, sunny days, and oncoming thunderstorms all touch off Levy’s headaches. He tries ice-packs, strong tea, steam, plain white rice. He takes Imitrex, one of the first drugs designed for migraines.
Imitrex is a dicey proposition: it’s ungodly expensive, can cause tightness in the chest, and doesn’t always work. Use it too much and you’ll get rebound headaches. He avoids Vicodin, which doesn’t work well. He lies on the couch. His four-year-old, Aedan, tiptoes in to survey the situation. At four, Aedan already knows the symptoms of migraine, and how to move quietly around them.
Levy investigates ancient history, a repository of migraine lore. Early sufferers endured trepanning (that’s drilling a hole in the skull, friends), herbal remedies, application of a stingray to the forehead, the placement of garlic in the newly trepanned hole. The ancients dubbed migraine hemicrania — half a head, for migraine invariably settles on one side, icepicking away at the inside of your skull while a host of other symptoms carry themselves out.
Later remedies included morphine, opium, cannabis (for the wrenching nausea), mercury, and a used noose, which sufferers tied round their heads. During the ‘50s, the afflicted were treated with ergotamine tartrate (a derivative of lysergic acid) and caffeine.
Oh caffeine, friend and foe of migraine. Too much and you tip into headache … but just the right amount on a bad morning, and all is well. Levy sometimes tries combating his headaches with Excedrin, a combination of aspirin, caffeine, and acetominophin. There was a time I took eight Excedrins a day.
Levy notes many more women than men suffer migraine; he kindly notes that the statistics may lie: perhaps many more women are willing to admit to migraine, while the guys tough it out. And toughing it out plays a huge role in Levy’s story: those who have never suffered migraine’s ravages cannot understand his inability to function.
In our not-so-vestigial Puritan society pain, particularly male pain, is something to be endured. Thus his colleagues roll their eyes. Even his wife, the very patient Siobhán, grows frustrated as her husband is replaced by a gaunt ghost. Levy is frank about the strains migraine place on their marriage, the way his withdrawal into darkness, both literal and figurative, leaves Siobhán exhausted and resentful. During the worst of his headaches, they barely communicate: he is incapable.
However, there is the comfort of finding oneself in excellent company of fellow migraine sufferers: Darwin, Woolf, Pope, Kipling, Freud, Didion, to name but a few. Then again, Levy notes that while migraine may not cause insanity, it certainly may contribute — consider Woolf and Van Gogh — and female migraine sufferers under the age of 45 (that would be me) are at much higher risk of stroke than non-migraineurs.
Amazingly, Levy finds a certain mysterious beauty in his headaches. The auras are indeed lovely, or would be, if they were external. And once one surrenders to the inevitable pain, the mind may reach a sort of alpha state. When one of his young students asks him how she, a chronic migraineur, will function in adult life, he tells her “…it is not enough to tough it out. When migraine doesn’t want you catatonic, it wants you making something new and won’t rest until you do.” He cites the famous mystic Hildegard of Bingen, who endured her headaches until:
…laid low by the scourge of God, I fell upon a bed of sickness…compelled at last by many illnesses, I set my hand to the writing.
To that end, Levy notes that both Freud and Thomas Jefferson did their finest intellectual work in the throes of migraine, or only very recently out of it, when the nervous system is still jarred and shaky, the stomach unsettled. Yet Levy himself remained very ill, anorexic, laid low.
Finally he saw a neurologist, who recommended Topomax, an anticonvulsant with “off label” effects on migraine, low blood pressure medication, and avoidance of caffeine, alcohol, chocolate, and smoked meats (nitrates are often implicated in migraine). Over time Levy improved, only to find himself hating the side effects of Topomax, often dubbed Dopomax for its dulling effects, including aphasia, dizziness, and nosebleeds.
He misses chocolate terribly. He stops the Topomax, adhering to a strict, ascetic diet. Slowly, for no particular reason, he improves. He makes peace with his headaches, accepting their existence, thinking that they are somehow intended to teach him something. Humility, certainly, but more than that: every migraineur knows the feeling of emerging from a headache, drained but also cleansed, newly aware of the simple pleasure of life in a headache-free organism. Post-migraine, life’s many stresses sit in proper perspective, robbed of the ridiculous strength we invest in them.
We crave privacy perhaps, our bodies sending us a signal that the crashingly loud, strobing culture we have built is not a thing of nature. Turn back, the body says, or at least: don’t forget. But what of the auras, and the visions, and the elevated, almost spiritual passages … Don’t we need them? You tell me.
Well, yes. Yes, we do. Perhaps, then, migraineurs should feel pity rather than jealousy for the headache-free. Minimally, we should share this book with friends and family, so they understand that migraine is more than a headache, never an excuse, but a sort of unwanted, strangely magicking spectre whose visits are beyond our control.