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This is the story of a man known online as Flash -- a man driven to the brink of suicide by the debilitating effects of cluster headaches. After years of ineffectual treatments, Flash stumbled on what he declared was a new treatment, as controversial as it was, he claimed, effective: hallucinogenic drugs.
Flash was ridiculed by the cluster headache community for his "miracle cure". But when a survey of fellow sufferers who self-medicated with hallucinogens was published in the mainstream journal Neurology, the results gave weight to his claims. The Harvard Medical School scientists who conducted the survey have now applied for a preliminary clinical trial on the subject.
Cluster headache (CH) remains an enigma to the medical profession. First chronicled in 1745, and frequently misdiagnosed as migraine, the condition is hardly a household name. Yet cluster headache affects as many as one in a thousand people -- 60,000 people in the UK alone, almost matching the prevalence of cystic fibrosis. Diagnosis of the condition is hampered by the fact that there are two forms: episodic and chronic. Sufferers of episodic CH are struck by headaches for one or two months of the year, often when the seasons change; the attacks can arrive at the same time each day and night. The symptoms then die down for up to 11 months before the cycle starts again.
Sufferers of chronic CH, however, enjoy no respite at all. They are plagued by up to nine attacks per day, every day; untreated, each attack can last up to two hours. CH is characterized by a pain so severe that it makes the most debilitating migraine look like a mild hangover. Many chronic CH sufferers eventually take their own lives -- earning CH the gruesome moniker "suicide headaches". Flash says the pain is virtually indescribable. "You go through a point when it's too sore to scream and all you can do is whimper, begging God over and over and over again. I've fantasized about blowing my brains out so many times you wouldn't believe it."
There are about four times as many men CH sufferers as women; attacks often begin in the late teens or early 20s. Flash's story began in 1986, when he was a teenager. "Because I'm an episodic sufferer, I didn't always associate this year's attacks with last year's," he says.
After three years of fruitless visits to his local GP, Flash self-diagnosed his condition, as do many new cases. "My doctor didn't have a clue. He said I was grinding my teeth, or it was my sinuses. I was worried I had a brain tumour, so I got a book out about the brain. I looked at migraine, and cluster headache was on the next page. I took the book to the doc and he agreed it might be what I had."
Unfortunately, the diagnosis did not lead to an effective treatment, because there are no drugs developed specifically for CH. Instead, a cocktail -- conventional painkillers, migraine drugs, beta-blockers, even antidepressant medication such as lithium -- fills the vacuum. "My doctor did the worst thing you can do to a person with cluster headache: he put me on normal analgesics. Aspirin, paracetamol, codeine -- doubling up on the codeine -- taking whatever you're allowed to each day," Flash says. "It took the lining off my stomach, and it aggravated the attacks until they got out of control."
Next, they tried beta-blockers, as well as heart drugs designed to lower blood pressure. But severe brachycardia, a slowing of the heartbeat, began to accompany Flash's headaches; during one rush to A&E, his heart rate fell to 30 beats per minute. The beta-blockers were replaced with amitriptyline, an older generation tricyclic antidepressant. "It didn't do much except give me a dry mouth and make me look psychotic."
Neither Flash nor his doctor knew at the time that many CH sufferers swear the best way to abort an attack is to inhale pure oxygen. Instead, with no effective treatment, the cluster headaches began to destroy Flash's life. "If you are an episodic sufferer you get months of a perfectly normal life: college, girlfriend, job. Then -- wallop -- you have to say goodbye to the lot."
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