Oliver Sacks received 10,000 letters a year from his readers. One of those letters should have been from me. Even if he wouldn't have responded to it (he only responded to children under ten, prisoners, and the elderly), I owe him a thank-you. He was a lifeline when, alone and suffering, I thought my life was over. And, it seems strange to say, I know he would have loved my headaches.
His book, Migraine, published in 1970 and updated in 1992, was the first book I ever special ordered from a bookstore. I was 15 years old and it quickly became a bible of sorts. Although written for the layperson, it's not one of his breezy, readable case histories of people with strange ailments such as The Man Who Mistook His Wife for a Hat. Rather, it's focused on understanding the headache itself – a clinician's thorough overview of a still poorly understood neurological disease.
I didn't learn from my neurologist how to manage my fear of migraine or my impending sense of doom. I wasn't given a toolkit to understand my symptoms or side effects. Dr. Sacks gave me that.
In it, he giddily describes meeting with patients and realising that migraines were much more than a single-type of headache. "I was at first disconcerted, but later delighted, at the complexity of the histories I received," he explains. "Here was something which could pass, in a few minutes, from the subtlest disorders of perception, speech, emotion, and thought, to every conceivable vegetative symptom. Every patient with classical migraine opened out, as it were, into an entire encyclopaedia of neurology."
That's me. An entire encyclopaedia of neurology. Here are some of the types and sub-types of migraine I have suffered from: classic migraines, common migraines, food and caffeine migraines, menstrual migraines, stress migraines, let-down migraines (migraines that happen after finishing a particularly stressful task – often called "weekend migraines" – mine hit after turning in homework or finishing tests). I sometimes have migraines when it is a humid day and about to rain. I have migraines when I think about migraines too much. I can unintentionally summon them. In fact, as I finished writing this I started to feel one creep into the background of my head. A shadow. And I made myself get up and work at something else to try and shake it off.
Here are some of the side effects of migraines I have experienced: sensitivity to light, sound, and smell. Sharpened taste. Dulled tasted. Severe nausea and vomiting. Weight loss. Bloating. Eye socket pain. A range of hallucinations and aura: scintillating scotomata, negative scotomata, blurred vision, phosphenes, paraesthesiae. Déjà vu. An impending sense of doom. A looming. A feeling of being followed by shadows. Post-migraine euphoria.
Migraines are difficult to define. Sacks spends most of Migraine addressing the broad range of symptoms and types. "Migraine," he says, "is traditionally described as a violent throbbing pain in one temple, and not infrequently takes this form. It is impossible, however, to specify a constant site, quality, or intensity for in the course of a specialised practice one will encounter all conceivable varieties of head-pain in the context of migraine." Migraines can be relatively straightforward headaches or they can be brutal dictators of your life. They can be muted or overload your circuitry with bizarre sensations and wreaking a havoc on your senses. The first time I encountered my migraine symptoms I thought I was dying. Sacks somehow, in Migraine, offers a sense of wonder to sufferers – as if he were the circus grandmaster directing an audience to several different special tricks our disease allows the brain to do.
Migraines are not rare – 37 million Americans suffer from them. Classic migraines with aura are much less common. But despite the millions of sufferers of migraine in all forms, funding for research is limited and it remains a poorly understood, difficult to treat, and often debilitating disease. Before I had migraines, I didn't know what a migraine was. As an adult, I've known many migraineurs with a wide variety of symptoms and severities, but I've met few who had them as frequently or as young as I did.
When I graduated in 1995, it was, in some ways, remarkable. I missed 80 days of 180 days of my senior year of high school. I had a bad wisdom-teeth removal surgery that still gives me nightmares. I had an obscenely serious case of chicken pox that quarantined me for two weeks. I had a severe stomach bug and lost so much weight I hit celebrity skinny right before senior prom. But combine all these challenging illnesses together and they had nothing on what my brain was going through. Beginning around 14 or 15, I experienced three to five classic migraines a week for well over a decade.
I spent the last year of high school in a darkened bedroom with a cold compress on my head. When the headaches first started years earlier, I had been misdiagnosed. I was told I was stressed. I was told I had sinus problems. I felt dismissed. The pain was severe and unresponsive to over-the-counter pain relievers. I imagined stabbing a fork into my brain to relieve pressure. But when the auras started to accompany them, I was finally referred to a specialist.
Fractured triangles and circles across my field of vision, lines with spikes shooting out of them warping my eyesight into what appeared to me as a poorly shot horror movie. Sharp sparks of rainbow colours shooting and swirling and moving across the landscape. Called auras, the hallucinations preceded the spiky, seemingly unending sharp pain of a headache.
These auras, I eventually learned, were my warnings. Depending on their severity I would have about half an hour to find a safe space to be. I needed darkness desperately. The longer I went without it, the more pain and greater the promise of vomiting. High school was not a safe space. There were no dark rooms or quiet spaces. Light was florescent and poisonous. There were teachers and administrators who thought I was just being dramatic. Sometimes, fearing opposition, and with an aura turning school hallways into a field of shooting stars, I just walked out the door and walked home, having my mother call the school and tell them she'd picked me up. For over a decade of my life, from high school, through college, and several years after, migraines ran the show.
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At some point in tenth grade, I was finally sent to a neurologist, a man who looked uncannily like Bill Clinton and had a "Don't Panic" sign hung on the wall behind his office desk. He prescribed me Imitrex, an important migraine drug, only available in injectable form at that time. That day, I learned how to give myself shots in my arm. The needle hurt, the medication burned and often left me bruised, and the drug sent waves of nausea curling up and down through my body as if I were riding on a boat in a storm with 20-foot waves. If Imitrex had worked better for me, I would have been able to continue my day. But it knocked me down most of the time, almost as bad as the headaches themselves.
Eventually, Dr. Bill Clinton prescribed me a giant bottle of hydrocodone. The pills worked, sort of, but left me doped and prone to what are called "rebound headaches." As soon as the drug would wear off, an aura would creep back across my eyes and the process would start all over again. I learned to use the painkiller sparingly—primarily if the migraine happened at night, when I could sleep off both the pain and drug. I learned to spend days alone in the dark. And sadly, I never found a drug that truly shook off my migraine pain without its own severe side effects.
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Despite his entreaty not to panic, I didn't learn from my neurologist how to manage my fear of migraine or my impending sense of doom. I wasn't given a toolkit to understand my symptoms or side effects. Dr. Sacks gave me that. In Migraine, he quoted Montaigne, "Fear of this disease used to terrify you, when it was unknown to you." And he explained that people who read his book will not be cured, "but at least he will know what he has, and what it means, and will no longer be terrified."
Things have changed for me in some ways. I still suffer from severe chronic illness, and sadly, I still spend many days in bed. But migraines are rare for me now. I feel lucky to have under a dozen a year.
I can't say that I am a graceful sick person. I have spent so much of my life responding to illness, that I am constantly trying and usually failing to stuff bitterness and anger under my bed and out of sight. Illness and chronic pain has affected my career, my friendships, my ability to care for my family, and altered my sense of self. Reading Dr. Sacks was and will continue to be a wake-up call for me. I am alive. I am breathing. Get up. Try again. You're remarkable in your abnormality. Don't be afraid to celebrate the strangeness of it all.
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