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The Worst Pain

Clusterheads have headaches said to hurt worse than childbirth.
April 14, 2013, 12:00am
Francis Bacon, Head VI, 1949; Oil on canvas.

Headaches are the mysterious chefs of a cornucopia of pain, the subject and inspiration of strange, amazing art, the dark indiscriminate tormenter of brains that are mostly dumbfounded by how they actually work.

What are they and where do they come from? Doctors don't know what to call them exactly; are they a disease, a disorder, a condition, or a syndrome? They are thought to be related to "abnormal control" of pain neurons in part of that core brainstem. Migraines, the second most common type of headache, are described as "a genetically unique nervous-system configuration," by one specialist—there are specialists for these—and seem to derive from both environmental and genetic factors; about two-thirds of cases seem hereditary. For some reason, migraines prefer boys over girls, and women over men.

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Sallie Tisdale, a writer and sufferer of a mysterious, chronic headache, offers a more tactile definition in her essay in the May issue of Harper's.

When people say they have a migraine, they usually mean a severe and peculiar kind of headache: throbbing, one-sided, accompanied by nausea and sometimes vomiting, by photophobia (oversensitivity to light) and sometimes phonophobia (oversensitivity to sound). But headache is not always the main experience of migraine, and may not be present at all. About 20 percent of attacks start with "auras," which range from the perception of vivid and "scintillating" lights to tingling or numbness along the skin, food cravings, trouble speaking or hearing, or depression. Some people yawn irresistibly.

During a migraine attack, people can become so confused they appear intoxicated; afterward, they may experience a sense of euphoria. But there are also bilateral migraine headaches and migraine attacks without auras, nausea, or sensor or mood changes. Some migraine attacks, mostly in children, are felt primarily in the abdomen; another type causes temporary paralysis. Migraineurs may also experience Alice-in-Wonderland syndrome, in which parts of the body seem to be of abnormal size. My friend Jeanne went blind one day from a migraine; she couldn't see normally for months…  People with acute migraines are protected by federal antidiscrimination law.

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The little memoir is a sobering personal account of her own struggle with a peculiar headache that comes on out of the blue, a struggle that leads her on a hunt through the headache atlas. Migraines aren't even the big leagues when it comes to headache intensity. Consider the TAC, or trigeminal autonomic cephalalgias. The last word comes from the Latin for headache, and the first word refers to the largest of the crainal nerves, the one that runs along the face and scalp. Among these are "cluster headaches," which are also sometimes called "suicide headaches." These are bang-your-head-against-a-wall headaches. They tend to afflict mostly men in their 20s and 30s; but the women who do get them say the pain can be worse than childbirth.

Cluster is dramatic and uncommon. Like those of migraineurs, the brains of people with cluster headaches (who sometimes call themselves clusterheads) are microscopically different from other brains. What does it mean that a third of people with cluster headaches have brown eyes? I've found sober researchers describing people with cluster headaches as having a "leonine" appearance, as being taller than average, or as having thickened skin. A correct diagnosis, some estimates suggest, can take as long as nine years. Taking triptans and breathing high-flow oxygen are the most effective treatments for cluster headaches; hyperbaric pressure also helps. But there is growing evidence that psilocybin, LSD, and related compounds can completely eliminate cluster headaches, even at subhallucinogenic doses.

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Trippy drugs may be one of the best medicines we have. According to a 2006 U.S. National Institutes of Health study, "Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks … 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension." Other limited studies, including one in 2011, have also showed success at treating cluster headaches with LSD. As my colleague Brian Anderson has reported, some American clinics are experimenting with MDMA to treat PTSD and other psychological disorders. But because of the red tape involved, studies involving contraband drugs are difficult to undertake; last month, a major study by the British government on mushrooms' benefits for treating depression was postponed because of regulatory and legal concerns.

Meanwhile, sufferers find their own ways to cope. Darren Aronofsky documented the experience of a cluster headache attack with searing intensity in Pi; this is the affliction for which the movie's mathematician protagonist takes a cocktail of drugs. Aronofsky isn't a suffer, he's said, but he was inspired by a friend, an actress whose career had been devestated by her migraines. "I started seeing artwork that came from, that migraine sufferers drew of their migraine attacks, and it was exactly the type of things we were talking about, like the hand of god reaching down and pulling out a chunk of brain."

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In retrospect, the headache scenes in Pi almost look like a touchstone for, a symbol of, Aronfsky's viscerally cerebral style. When they come on, the camera shakes, an innovation someone dubbed VibraCam. (But "we just literally put the camera on a long lens and just shook it, because that was about what we could afford.")

In real life, "you're lucky if you can get into the bathroom and slug down a couple of aspirin," says one man in a YouTube video. He describes the feeling of being awoken in the middle of the night with a sharp pain: imagine a hand reaching around the inside of your skull, he says, trying to pull your eyeballs out through the back of your head.

He is part of a small global community of clusterheads (it's unclear how many there are, but it's estimated that cluster headaches afflict approximately 0.1 percent of the population) who congregate on web forums to recount their attacks and their struggle to get diagnosed, to share their various remedies, and to console one another. ClusterHeadaches.com describes itself as "a place to 'vent' when you wake up at 3 a.m. with a headache, the oxygen tank is empty, and you're out of Imitrex!" Its webmaster, Daren Johnson, started the site in 1998 after his first attack, and has received some 3 million visits since then; many leave notes in his guestbook. He doesn't ask for donations. "This site has been as much as a blessing to ME, as it has been to you," he wrote on his about page. "I sit here and cry as much as you do, trust me!"

Tisdale has heard of other, rare headaches too. None of them are hers, it turns out, but recounting them probably feels good.

the thunderclap headache that can knock a person off a chair; stabbing headaches, sometimes called ice-pick headaches, in the eye or temple—the stabs last for just a few seconds but come in waves, many a minute in episodes lasting for days. There are headaches caused by taking too many pain-reducing medications; the brain insists on bouncing back. A nummular headache occurs in a discrete, coin-size spot. There are headaches triggered by cold or sunshine; alarm-clock headaches that wake people from sleep like, well, clockwork; preorgasmic headaches and orgasmic headaches and exertional headaches that make people ill when they exercises, and headaches you only feel when you cough.

The article, a personal medical whodunit, an engaging and difficult testament to the brain's maladaptivity, is in the current issue of Harper's and behind a paywall, which is a much less painful type of headache.