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Cluster busters
Ignored by mainstream medicine, people who suffer bizarrely painful headaches are helping to test hallucinogenic drugs as a cure. Arran Frood talks to these citizen scientists.
http://www.nature.com/naturemedicine
It began the same way, every day at 3 p.m. First came the dull ache, then a sharp pain behind the right eye followed by debilitating agony. The only difference was how long it would lastanywhere from 45 minutes to three hours on a bad day.
Its a hundred times worse than the worst pain youve ever felt, but pulsating and persistent, like someone is trying to pull your eye out, says Peter May, who has suffered from cluster headaches since 1999.
The headaches are so horrible that each year people who endure them take their own lives, earning the condition the gruesome moniker of suicide headaches.
Really, you wouldnt wish it on your worst enemy, May says. Once I was looking at a pneumatic drill wondering if drilling into my head would relieve the pain. Thats when I realized that things werent right and I had to get it sorted somehow.
On the Internet, where many like May had begun to congregate, news had gained momentum that hallucinogenic drugs such as LSD and psilocybin, the active ingredient in magic mushrooms, could provide sweet relief from the headaches.
May, a respectable middle-aged man with
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young children, had never even considered taking mind-expanding drugs. But after trying a veritable medicine chest of legal remedies, none of which are designed to treat cluster headaches and none of which worked, May was desperate for relief.
Like May, many individuals who suffer from cluster headaches have found that the illegal drugs are their only choice. Neglected by the scientific community and forced underground by the law, they have turned to the Internet to secretly find, research, promote and even sell the treatments that work.
In a classic example of citizen science, they have even roped in scientists to validate what their experiences have shown and plan clinical trials and other research to take the treatments forward. I dont believe that even any of the big pharma companies would have got any further in the same period of time, says May.
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