Cluster headaches have been described as “the most painful condition on the planet”, with sufferers going to extreme – and sometimes secretive – measures for relief from a pain that is often more excruciating than childbirth or gunshot wounds, but little understood.
Offering hope and support to these people is an online community of “clusterheads”, who are self-experimenting with psilocybin – with promising results, they say.
Peter was working late, watching two roulette tables in play at a London casino, when he felt something stir behind his right eye. It was just a shadow of sensation, a horribly familiar tickle. But that night in 2018, he knew he only had a few minutes.
He muttered that he had to leave, and ran outside. By then, the tickle had escalated, as if a red-hot poker were being shoved through his right pupil. Tears flowed from that eye, which was nearly swollen shut, and mucus from his right nostril. Half-blinded, he stumbled into a company car that whisked him home, where he blacked out.
Every day thereafter, Peter, then in his early 40s, would experience the same attack at 10am, 2pm and 6pm, like clockwork: fireworks would explode in his temple and the poker stabbed into the very roots of his teeth, making him scream, sometimes vomit.
The Guardian reports that he had experienced these inexplicable episodes since he was a child, always in the summer. They left him shaking and exhausted.
In 2016, he saw his NHS GPS three to four times a week. He tried to describe his clockwork cycles, the agony – but they thought he was making it up. Multiple doctors diagnosed him with chronic migraine, but the medications they prescribed did nothing.
Finally, he saw a private neurologist who diagnosed episodic cluster headache (CH), or what experts have nicknamed “suicide headaches”.
CH is a rare disorder that affects up to 0.1% of the global population. More men are diagnosed than women, though women might be more likely to be misdiagnosed with migraine, due to their reports of severe pain not being taken seriously.
People with CH have rated the pain at 9.7 out of 10 – worse than childbirth at 7.2, a gunshot wound at 6 and a migraine at 5.4.
Right now, much of the limited research on CH is happening in the US. Cluster headache patients are 20 times more likely to commit suicide than the US average. More than half of American cluster headache patients have considered killing themselves, and almost 20% have lost a job due to their debilitating condition.
Instead of trying to tolerate a level of chronic agony that doesn’t feel survivable, patients have taken to experimenting with their own pain, their own bodies and psychedelic drugs.
Desperate measures
On a Reddit forum called clusterheads, people with CH from around the world have built a subculture around unconventional home remedies to stop or lessen their pain. Some chug multiple Red Bulls when they feel one coming on. Others swear by large doses of vitamin D, or dunking their head in a bucket of ice water.
Many report self-injurious acts in desperate attempts to relieve the pain, like banging the side of their head against a wall. “My wife has to stop me from gouging out my eye with a spoon,” one patient said.
The “clusterheads”, as they call themselves, post the results of their self-experimentation and compare notes.
Multiple clusterheads write that they have developed a phobia of going to sleep, as attacks often occur at least once at night, thought to be triggered by the REM cycle.
They discuss treatments: how to obtain a prescription for CH, and their shortcomings. High-flow medical oxygen is the only known, reliable method of aborting an attack that works for 74% of CH patients.
However, many neurologists in the US don’t know how to prescribe oxygen for CH, because it’s not approved by the FDA. When oxygen is prescribed, the tanks are often an out-of-pocket expense many patients cannot afford.
Triptan drugs, a class of migraine medication, can abort CH attacks but are not advisable to take more than 10 days a month for risk of organ damage.
Clusterheads also believe that taking triptans for too long can make an episodic patient “go chronic”, eliminating periods of remission between cluster cycles – their worst nightmare.
In 2019, Emgality became the first-ever drug approved by the FDA for the treatment of both migraine and cluster headache. It works for many patients. However, some clusterheads say the monthly injection can take months to take effect, at which point their CH cycle might already be over.
Clusterheads want something that can flip a switch in the brain and turn off the clusters. Presented with less than ideal pharmaceutical options, most are now urging each other to try magic mushrooms.
‘Busting’ the cycle with shrooms
In 2021, Peter’s cycle didn’t stop as it usually did at the six-week mark. He eventually turned to the internet and found r/clusterheads where multiple clusterheads were happily reporting they had “busted” their cluster cycles using magic mushrooms.
Peter took his first two grams on in July 2022. Five or six hours flew by. He realised he hadn’t had an attack all day. The next five days passed uneventfully.
“Then, I hit it again. This time, I just lay down, listened to music, and it was a bit more enjoyable,” he said. “Not a peep in my head since.”
“With any luck,” he said, “I may have conquered this thing.”
Within a few years, the cluster heads community landed on a cycle-busting regimen that seemed to work for most people, most of the time: three doses ranging from just a microdose to three grams of shrooms, taken five days apart, preferably at the outset of an expected CH cycle.
Some successfully used the regimen to stay in remission for years.
Emmanuelle Schindler, assistant professor of neurology at the Yale School of Medicine and medical director of the Headache Centre of Excellence at the Veterans Affairs hospital, was a graduate student studying the pharmacology of psychedelics when she first came across Clusterbusters.org.
Cluster pain attacks the large trigeminal nerve, which snakes from the eye socket down into the jaw, but little else is known about how CH actually works. Schindler found the disorder’s strange patterns fascinating.
Why the clockwork episodes? Why do attacks have such a violent onset, only to dissipate completely within 15 to 180 minutes? Why do some people have chronic CH that forgoes episodes altogether?
Using Bob Wold's, a coach for his kids’ Little League team in Illinois, data, directly sourced from 493 adults with cluster headache on Clusterbusters.org, Schindler co-authored a survey study that found 35.5% of subjects used “illicit substances” to treat themselves.
The 2021 study was titled You Will Eat Shoe Polish If You Think It Would Help.
Next, Schindler directed the first-ever randomised, double-blind and placebo-controlled clinical trial in the US on psilocybin for the treatment of cluster headache patients. The significance of this, for the clusterhead community, cannot be overstated – there were very few studies on CH to begin with and no controlled trials in the US to prove what clusterheads have theorised for decades: that psilocybin is an effective treatment for CH.
(Psilocybin is approved for research by the FDA in the US, but not for medical use. Researchers in the UK must apply for a licence to use the drug in studies, at additional expense and delay.)
For the first trial, published in November 2022, Schindler gave patients in the midst of a cluster cycle either psilocybin or a placebo, and tracked their attacks for eight weeks. In an extension trial, she repeated the experiment, giving all 10 returning patients psilocybin.
The results were highly suggestive: three doses of 10mg of psilocybin taken five days apart – the exact regimen developed by Clusterbusters in the early 2000s – cut patients’ average of 18.4 weekly cluster attacks in half.
A small Danish study, published in January 2024, using a similar psilocybin dosing regimen, further confirmed Schindler’s results.
Scientists cannot say for certain why psilocybin might be an effective treatment for CH. But they aren’t exactly surprised that it works for some patients, said Christopher Gottschalk, chief of neurology at the Yale School of Medicine. Psilocybin activates serotonin receptors in the brain in the same way triptans and other migraine medications do.
Scientists suspect this chemical reaction rewires one’s circadian rhythm in a way that no existing medication can, preventing cycles long-term.
Since the Trump administration froze funding to the National Institutes of Health (NIH) in January, hundreds of studies have been terminated and the NIH has announced a plan to cut billions of dollars from labs and universities across the country – including Schindler’s.
Gottschalk and others noted that when Robert F Kennedy Jr, who now oversees the FDA, expresses enthusiasm for psychedelic research, that is hardly a promise of money in the next four years.
‘We need professionals’
Wold isn’t any more optimistic that magic mushrooms will be approved by the FDA to treat CH than he was 25 years ago. Even if they were, how helpful would the FDA’s approval be for CH patients?
The FDA’s drafted guidance for the clinical use of psilocybin, which suggests how it might be regulated for public use in the future, recommends that two trained professionals are present to administer the drug. Wold emphasises that CH patients would need it on demand and at home to be effective.
See more from MedicalBrief archives:
CHIPS: Widespread misdiagnosis and mismanagement of cluster headaches
Magic mushrooms not a ‘miracle cure’ for mental health ailments
New research propels psychedelics into the mainstream
New migraine drugs no better than usual painkillers – global analysis