Clusterbusters - Nature Magazine

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noticetext: 'Ignored by mainstream medicine, people who suffer bizarrely painful headaches are helping to test hallucinogenic drugs as a cure.'
excerpt: "It began the same way, every day at 3 p.m. First \ncame the dull ache, then a sharp pain behind the \nright eye followed by debilitating agony. The only \ndifference was how long it would last—anywhere \nfrom 45 minutes to three hours on a bad day.\n“It’s a hundred times worse than the worst pain \nyou’ve ever felt, but pulsating and persistent, like \nsomeone is trying to pull your eye out,” says Peter \nMay, who has suffered from cluster headaches \nsince 1999.\nThe headaches are so horrible that each year \npeople who endure them take their own lives, \nearning the condition the gruesome moniker of \n‘suicide headaches’.\n“Really, you wouldn’t wish it on your worst \nenemy,” May says. “Once I was looking at a \npneumatic drill… wondering if drilling into \nmy head would relieve the pain. That’s when I \nrealized that things weren’t right and I had to get \nit sorted somehow.”\nOn the Internet, where many like May \nhad begun to congregate, news had gained \nmomentum that hallucinogenic drugs such as \nLSD and psilocybin, the active ingredient in \n‘magic’ mushrooms, could provide sweet relief \nfrom the headaches.\nMay, a respectable middle-aged man with \nN E W S F E A T U R E\nyoung children, had never even considered \ntaking mind-expanding drugs. But after trying \na veritable medicine chest of legal remedies, none \nof which are designed to treat cluster headaches \nand none of which worked, May was desperate \nfor relief.\nLike May, many individuals who suffer from \ncluster headaches have found that the illegal \ndrugs are their only choice. Neglected by the \nscientific community and forced underground \nby the law, they have turned to the Internet to \nsecretly find, research, promote and even sell the \ntreatments that work.\nIn a classic example of ‘citizen science’, they \nhave even roped in scientists to validate what \ntheir experiences have shown and plan clinical \ntrials and other research to take the treatments \nforward. “I don’t believe that even any of the big \npharma companies would have got any further \nin the same period of time,” says May.\nPeriodic pain\nOften misdiagnosed as migraines, cluster \nheadaches were noted as early as 1745 by Gerhard \nvan Swieten, personal physician to the Austrian \nEmpress Maria Theresa. The doctor observed \nthat a healthy, robust man of middle age suffered \nfrom a “troublesome pain which came on every \nday at the same hour at the same spot above the \norbit of the left eye.” The man, the doctor said, \n“felt as if his eye was slowly forced out of its orbit \nwith so much pain that he nearly went mad.”\nMore than 250 years on, doctors know little \nmore about the condition, if they have heard of \nit at all.\nCluster headaches are a type of neurovascular \nheadache affecting about 1 in every 1,000 people. \nTheir hallmark is the curious periodicity of \nattacks, which occur at the same time each day \nand in the same spot, usually in otherwise healthy \nmiddle-aged men. Only one in five sufferers is a \nwoman.\nThe episodic forms of the headache, which \naccount for about 90% of the cases, are nothing \nshort of bizarre: one month of headaches in the \nspring and one in the fall is typical. This semiannual regularity based around the equinoxes \ndefies explanation, but at least provides some \nrespite from the pain.\nThe remaining 10% of sufferers live with the \nchronic form and are subjected to up to eight \nattacks a day, each of which can last three hours \nif untreated or if the medication fails.\nThe intense pain derives from stimulation \nof the trigeminal nerve, which is responsible \nfor sensation in the face. But the problem is not \nlocal to the nerve, eye or face—it lies within the \nbrain.\nBrain-imaging studies indicate the \nhypothalamus as the area of pathogenesis, unlike \nmigraines where the brain stem is activated. Still, \nmost prescribed medicines are those given for \nmigraines, antidepressants or calcium channel \nblockers designed to reduce blood pressure. \nThere are no drugs specifically for cluster \nheadaches.\nSome migraine drugs such as sumatriptan \n(Imigran, Imitrex) are effective when inhaled \nor injected, but May began to notice a worrying \nincrease in the frequency of his daily attacks after \ntaking sumatriptan.\nThe best abortive treatment isn’t even a drug. \nInhaling pure oxygen works for about 80% of \ncluster headache sufferers, although the attack \nmust be caught within five minutes. Access to the \nbulky cylinder also isn’t always possible.\nFrustrated with the poor functionality of \nexisting equipment, lifelong chronic sufferer Ben \nKhan invented the ‘Clustermasx’ which, Khan \nsays, uses less oxygen, is more effective and can \nabort an attack in five minutes. One reviewer of \nhis method raved that “a layer of pain is shaved \noff with every inhalation.”\nAbout one in five sufferers is resistant to all \napproved treatments, including oxygen. May, \nwho had transitioned to chronic attacks in \n2002, feared he’d soon be one of them. Then he \nstumbled on to a flurry of excited activity on the \npopular website www.clusterheadaches.com.\nMagic mushrooms\nTypical posts on the website raved about \nmushrooms of the genus Psilocybe, which have \nbeen used for centuries by traditional healers and \nshamans to commune with the spirit world.\nWary of experimenting with illegal drugs, May \nresearched them for six months before yielding in \nlate 2002. The results were everything he’d hoped \nfor. “It worked immediately. I had ten pain-free \ndays and I thought, ‘I’m cured’,” he says.\nThrough trial and error, May discovered that a \nsmall dose—too small to cause hallucinations—\nof the dried mushrooms taken every one or two \nmonths was enough to keep his daily attacks"

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