Published in The Independent, Oct 7th here.
Cluster headaches cause such severe pain that some sufferers are driven to suicide. Now one man believes he’s found a surprising cureBy Arran Frood
Tuesday, 7 October 2008
‘You get to the point when it’s too sore to scream and you can only whimper’
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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 characterised 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 fantasised 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.”
Turning on, tuning in, and dropping out (of university),Flash experimented with the powerful hallucinogenic drug LSD (“The best and worst eight hours of my life”). His next cluster attack, due in January 1992, never materialised. “In my naivety, I thought, ‘It’s just gone away.’ But cluster headache doesn’t just go away.” Not stopping to question his good fortune, Flash finished his degree, got a new girlfriend and started his own business. Free of the headaches for more than two years, life was good.
But in the autumn of 1995, Flash got the first harbingers that a new episode was on the way – clusterheads call them “shadows”. So he drew up a battle plan. “There was no way I was going down without a fight. I made a list of everything I’d done differently in 1993 and 1994… and one thing stood out. It was the acid.”
He read online that LSD had been used in the 1960s as a treatment for migraine. But he had severed his ties with the underworld, and had no way of getting any LSD to test his theory. What he did have access to were wild-growing magic mushrooms. Thinking that these contained LSD (they in fact contain psilocybin, a chemical cousin), Flash settled down for a psychedelic night on the sofa with some friends. “It was 50 per cent recreational and 50 per cent theoretical,” he says. “I was desperate.”
He was thrilled to find that the “shadows” evaporated – and stayed away. He began taking a light, sub-hallucinogenic dose of 12 to 20 mushrooms approximately once every three months, and found that he remained symptom-free for nearly a year. “I started to tell people about it,” he says, “but they thought I was mad.”
He decided to do another test. Clusterheads say never to drink alcohol during an episode, because it can trigger an even more crippling attack. “I got a glass of whisky and made the mushroom tea,” Flash says. “I necked the alcohol, then I drank the tea. The cluster attack came on full force and lasted 10 minutes, before it went ‘pop’ and was gone… That was one of the best moments of my life. I’d kicked its arse, properly”.
Flash described his tests at clusterheadaches.com, a forum for CH sufferers. But the community is awash with folk remedies. “There are people pushing jalapeno peppers up their nose, trying to deaden the trigeminal nerve [the physical cause of the pain],” Flash says. He was accused of being a snake-oil salesman. “How dare you try to get people hooked on drugs, you junkie scum,” he recalls being told.
Behind the apparent idiocy of the theory lay some solid, if not fully understood, science. Psilocybin and LSD are chemicals called tryptamines, like neurotransmitters such as serotonin; they bind to nerves in the same way. Indeed, arguably the most effective migraine drug, sumatriptan (Imitrex, or Imigran), which can also abort CH attacks, is chemically very similar to DMT, a hallucinogen found in plants native to South America. Similarly, the anti-migraine drug methysergide is based on the LSD molecule, but with virtually no hallucinogenic properties, though it can cause severe fibrosis.
A handful of CH sufferers thought there was truth in Flash’s unorthodox solution. One man, Bob Wold, decided to start clusterbusters.com, a website devoted to campaigning for research and disseminating information about how to safely use hallucinogenics.
Anecdotal reports of the clusterheads’ use of hallucinogens attracted the interest of John Halpern of Harvard Medical School in Massachusetts. Spurred on by the suicide of a colleague who suffered from CH, Halpern and colleague Andrew Sewell interviewed 53 people who had self-medicated with the hallucinogen therapy. The survey results suggested that there was something to Flash’s idea after all. The pair published their results in the respected journal Neurology, and Halpern has now submitted a protocol for a Phase-I clinical trial to the university’s Institutional Review Board.
“It is a life-or-death situation for some of these patients,” Halpern says. “A number of neurologists would express interest [in the subject] and then walk away due to the complications with doing research with Schedule-I substances,” drugs classified in the US as having high potential for abuse. But Halpern is also conducting a study at Harvard into the therapeutic effects of MDMA on anxiety in terminal cancer patients, and already had permission to use Schedule-I substances; he decided to pursue the matter himself.
“The benefits clearly outweigh the risks,” says Halpern. “This is a seriously debilitating condition… Your jaw drops at what people go through, the torture they go through just to get properly diagnosed. Many people do OK using conventional medication, but we have a moral obligation to those people that are treatment-resistant.”
There are serious obstacles to psychedelics ever becoming legitimate medicines. Taking the drugs over a long time can pose a real risk to mental well-being, such as triggering psychosis. Distributing the drugs could also prove difficult, though in the US there are systems to administer some abusable drugs – including GHB (gamma-hydroxybutyric acid), a treatment for narcolepsy – to registered users.
The largest obstacle might be getting the pharmaceutical companies on board. The patient population is relatively small, and psilocybin and LSD are not patentable. Besides, according to IMS Health data, annual sales of sumatriptan succinate tablets in the US over 2006/07 were $950m. Why spend millions developing a risky drug with a poor reputation that would negate the need for regular purchases?
Some leading neurologists still doubt that the technique has potential; to many in the CH community, however, Flash is a hero. But for now, like many of his fellow self-medicators, he chooses to remain anonymous, fearful that his exploits with drugs might stigmatise him in the business community, where he is co-director of a company with over 100 employees.”Some people think that this cure is not palatable,” he says. “But I don’t think you get multiple chances with something like this. This is the best treatment we have.”
Headaches from hell
Cluster headaches are a rare and severe form of headache, affecting around one in a thousand people.
There are two forms of cluster headache: episodic, which affects 90 per cent of sufferers, and chronic.
Episodic cluster headaches occur once or twice daily throughout active periods, but then not at all during the weeks, months or years between those periods. Sufferers of chronic cluster headaches endure up to nine attacks each day.
The pain is centred around the eye socket and temple, and is so severe that the neurological disease is sometimes known as “suicide headaches”, because many chronic sufferers eventually kill themselves. The condition has also been dubbed “alarm clock headaches” because of the precise regularity of attacks.
The causes are unknown, and treatment varies widely according to the patient. Over-the-counter painkillers are ineffective. Methods that have worked for some people include hot showers, caffeine, drinking lots of water, vigorous exercise, and even orgasm.