ohf all the symptoms with which disease makes us familiar, pain is known to be the most difficult to quantify. Both a somatic and psychic experience, pain is chameleon-like and stubbornly private. As Virginia Woolf notes in her essay On Being Ill, how can prose capture the nature of “this monster, this body, this miracle, its pain without slipping into mysticism”?
If pain is challenging for a writer, it is even more so for a doctor. Is a patient experiencing pain in as much discomfort and distress as they say they are? And, if so, how to treat them? And what if they are a slanderer or a hysteric and by alleviating their symptoms you reinforce their psychopathology?
This is the bond that also confronts patients suffering from migraines and poorly understood conditions such as endometriosis. But this is especially true of a condition known as a cluster headache (CH). Affecting one in 1,000 people, CHs typically occur in cycles lasting from a week to a year and are so debilitating that sufferers have sometimes been driven to take their own lives. Drugs such as sumatriptan can abort sufferers’ symptoms within 15 minutes, but the relief is always temporary and repeated use makes the attacks worse.
However, there is one remedy that sufferers say makes a difference: magic mushrooms. Members of Clusterbusters, a patient group that promotes research into psychoactive fungi, say they provide immediate relief and, in some cases, long-lasting remissions of their symptoms. Plus, you don’t have to undergo a full-fledged trip to enjoy the benefits; repeated low-level doses of psilocybin – the psychoactive ingredient in magic mushrooms – are often sufficient.
To convince researchers to take their claims seriously, Clusterbusters, which has thousands of supporters worldwide, carefully documented the experiences of CH patients who used psilocybin or LSD to treat their condition and in 2006 published 53 case studies in Neurology (22 of 26 psilocybin users reported that the compound stopped seizures). Since then, however, progress has been slow.
As Joanna Kempner, a sociologist at Rutgers University in New Jersey, explains in her compelling new book, there are many reasons for this. One is that there are too few CH sufferers to interest big pharma, but too many for the condition to be designated an “orphan disease” — a disease that affects one in 1,500 people. Another is prejudice. All too often sufferers are labeled as attention seekers or stigmatized as drug users (psilocybin is classified as an illicit drug along with heroin and cocaine in both the UK and the US).
The result, according to Kempner, is that “the most innovative psychedelic research on pain takes place almost entirely underground [through alliances] forged by bandelos and academics, working together, sometimes in partnership, sometimes in tension”.
Much of Kempner’s narrative is taken up with the documentation of these alliances and the negotiations between Clusterbusters and more established advocacy groups such as Maps (Multidisciplinary Association for Psychedelic Studies). In the process we meet Rick Doblinthe charismatic founder of Maps, and other psychedelic evangelists, including tech bros hoping to cash in on research into drugs like LSD and MDMA to treat more commercially lucrative conditions like depression and post-traumatic stress disorder.
But while these alliances allowed Clusterbusters to gain access to prestigious medical schools, Kempner shows how they depended on donor funding and quickly soured when the association with Clusterbusters and scientists with links to the criminal underworld threatened to jeopardize researchers’ professional reputations to set.
The most interesting characters, however, are the sufferers themselves – people like Bob Wold, an engineer and sports coach from Illinois. Now in his 70s, Wold had his first CH attack in 1978. After trying dozens of therapies and enduring four seizures so severe that he was hospitalized, Wold turned to the Internet for help. It was there that he met an IT specialist from Aberdeen, who found relief from his headaches by taking LSD. Wold began investigating similar reports using magic mushrooms and soon ordered the mushrooms via UPS.
Like most members of Clusterbusters, Wold had never experimented with psychedelics before and was surprised to find that low, sub-hallucinogenic doses relieved his symptoms. “Expect lots of blue skies … and a smile on your face for four or five hours,” he says.
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Exactly how psilocybin interrupts the headache cycle is an open question. Brain scans suggest that this may help restore the neural pathways involved in the pain cycle. Another theory is that it has something to do with psilocybin’s indole ring, which is similar in shape to the neurotransmitter serotonin (LSD and lysergic acidamide, which can be obtained from morning glory seeds, also have indole rings). The good news for sufferers is that following a 2018 decision by the US Food and Drug Administration to grant psilocybin “breakthrough therapy” status, researchers are starting to take these claims seriously. Indeed, in April the Yale School of Medicine published the results of the first randomized control study of psilocybin for pain relief. Although it only enrolled 10 CH sufferers, half of those who received psilocybin, as opposed to a placebo, reported a reduction in seizures.
Yale is now recruiting patients for a larger study. Interestingly, researchers believe that the mechanism by which psilocybin relieves pain is probably unrelated to the psychedelic experience. In theory, this bodes well for future research, as it makes it more likely that studies will be approved by conservative medical boards. The problem for psychedelic evangelists, however, is that such research tends to distract from studies on psilocybin for the treatment of depression and mood disorders, which are far more common and potentially more profitable.
All of this means that the trials and tribulations of CH sufferers are likely to continue.
Mark Honigsbaum is the author of The Pandemic Century: One Hundred Years of Panic, Hysteria and Hubris
