Drug taboos may block a potential treatment for cluster headaches, one of the most painful conditions known.

“I had a gun sitting on top of the computer monitor,” says Bill McConnell. “And I typed ‘suicide’ plus ‘headache’ into the search bar to leave an explanation for what I was about to do.”
McConnell, who is 39-years-old and wears a blue and white baseball cap, is commiserating with fellow sufferers of cluster headaches—a condition some doctors call the most painful known to medical science, and one that numerous sufferers say nearly drove them to take their own lives—in a room at the Hyatt Regency O’Hare on the outskirts of Chicago. He, like the rest, arrived a day early for the annual cluster headache conference organized by a group called Cluster Busters.

Though they look like ordinary people, and could easily be your neighbors or colleagues, clusterheads, as they jokingly refer to one another, have excruciating and extraordinary life stories. Their condition is well documented, poorly understood—and devastatingly painful. The medications they use to treat or at least reduce the suffering are sometimes life-threatening, often physically damaging, and usually psychologically and emotionally debilitating. (“The disease won’t kill you,” says McConnell, “but the treatments might.”) As a rule, they’ve gone mis- or undiagnosed for years, been called hysterical by general practitioners and neurologists unfamiliar with the condition, and endured countless failed attempts at a cure. Now, thanks to an active online community, and organizations like Cluster Busters, some sufferers are finding relief in an unlikely treatment: the serotonergic psychedelic drugs LSD and psilocybin, two chemicals that helped fuel the psychedelic revelry of the 1960s. Anecdotal reports of the drugs’ effectiveness against cluster headaches have even begun to attract the attention of major research universities.
Many cluster headache sufferers believe the term “headache” is a misnomer that doesn’t convey the sensation, or underlying cause, of an attack. McConnell says an attack is like having a hot ice pick pushed into the corner of his eye and out through the back of his skull; others at the conference used the metaphor of a demon crushing one’s head and jamming his finger into one’s eye socket—an order of magnitude worse than a severe migraine. “I would rather give birth without a painkiller than get ‘hit,’ ” says Becky Ulissi, referring to a cluster headache attack, of which she has up to eight each day.

The most common form of the condition is said to be episodic because sufferers are free from the headaches for most of the year. But during two-to three-month episodes, the headaches hit up to 10 times per day, and generally last anywhere from 45 minutes to three hours. Like clockwork, the episodes almost always start and end around the same time each year, and the headaches often come at the same times each day.

Nobody is certain what actually causes cluster headaches. Theories have ranged from defects in the trigeminal nerve, which branches out across the jaw, face, and forehead, to the irregular swelling of major cranial veins. Recent fMRI studies suggest that these theories are incorrect, and instead point to structural changes in the hypothamalus—the part of the brain responsible for circadian rhythms and other life-sustaining functions. Traditional treatments focus on aborting a headache that has started by self-injecting drugs like sumatriptan or dihydroergotamine, which both share chemical and biological similarities with the neurotransmitter serotonin, or preventing attacks altogether with calcium channel blockers like verapamil and steroids like prednisone. Pure oxygen is often effective at aborting an attack that has just started, but it must be administered almost immediately, and requires the correct type of oxygen mask and tank to be nearby. Unfortunately, long-term, heavy use of most traditional treatments can cause terrible side effects, including poor circulation, organ fibrosis, blood pressure and cardiac disturbances, type 2 diabetes, osteoperosis, anxiety, and other biological and psychological disorders.

Bob Wold, the president of Cluster Busters, has a story like many of the group’s members. His headaches went misdiagnosed for four years (he even had a few teeth pulled because his dentist suspected hidden cavities were causing the pain—a common, and unproductive treatment among wrongly diagnosed cluster headache sufferers). When he was properly diagnosed, none of the 75 medications he tried gave him lasting relief. During a particularly painful episode in which he began to consider a radical, and mostly unproven, surgical treatment that would have involved severing his trigeminal nerves and killing all sensation in his face, Wold came across an online discussion about using LSD or psilocybin to treat cluster headaches. He was hesitant, but 45 minutes after his first dose of psilocybin, he could tell that something remarkable was happening: “My head was clearer than it had felt in 20 years.”

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