OOf all the symptoms that illness presents us with, pain is the most difficult to quantify. Both a somatic and psychic experience, pain is a chameleon and stubbornly private. How can prose, as Virginia Woolf notes in her essay On Being Ill, convey the nature of “this monster, this body, this miracle, its pain without falling into mysticism”?
If pain is a challenge for a writer, it’s even more of a challenge for a doctor. Is a patient experiencing pain in as much discomfort and fear as he says he is? And if so, how should they be treated? And what if they are a fake or a hysteric and by alleviating their symptoms you are reinforcing their psychopathology?
This is the challenge also faced by patients suffering from migraines and poorly understood conditions such as endometriosis. But this is especially true for a condition known as cluster headache (CH). CHs affect one in 1,000 people and typically occur in cycles of a week to a year, and are so unbearable that patients are sometimes driven to commit suicide. Drugs such as sumatriptan can clear patients’ symptoms within 15 minutes, but relief is always temporary and repeated use makes attacks more severe.
However, there is one substance that patients 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-term remissions from their symptoms. Plus, you don’t have to make a full trip to enjoy the benefits; repeated low 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 followers worldwide, has painstakingly documented the experiences of CH patients who have used psilocybin or LSD to treat their condition, publishing 53 case studies in 2006 in Neurology (22 out 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 patients to interest the big pharmaceutical companies, but too many to label the condition an ‘orphan disease’ – a disease that affects one in 1,500 people. Another example is prejudice. Too often, patients are labeled as attention seekers or stigmatized as drug users (psilocybin is classified as a banned drug in both the UK and the US alongside heroin and cocaine).
The result, according to Kempner, is that “the most innovative psychedelic research into pain takes place almost entirely underground (through alliances), forged by outlaws and academics, working together, sometimes in partnership, sometimes in tension.”
A large part of Kempner’s story consists of documenting these alliances and the negotiations between Clusterbusters and more vested interest groups such as Maps (Multidisciplinary Association for Psychedelic Studies). In the process, we meet Rick Doblin, the charismatic founder of Maps, and other psychedelic evangelists, including tech bros looking to cash in on research into substances like LSD and MDMA to treat more commercially lucrative conditions like depression and post-traumatic stress disorder. .
But while these alliances gave Clusterbusters access to prestigious medical schools, Kempner shows how they relied on donor funding and quickly soured when the association with Clusterbusters and scientists with ties to the criminal underworld threatened to jeopardize researchers’ professional reputations.
The most intriguing characters, however, are the patients themselves: people like Bob Wold, an engineer and sports coach from Illinois. Wold, now in his 70s, had his first CH attack in 1978. After trying dozens of therapies and enduring four attacks so severe that he was hospitalized, Wold turned to the Internet for help. There he met an IT specialist from Aberdeen who had found relief from his headaches by taking LSD. Wold began investigating similar reports using mushrooms and soon ordered the mushrooms through UPS.
Like most members of Clusterbusters, Wold had never experimented with psychedelics and was amazed to find that low, sub-hallucinogenic doses alleviated his symptoms. “Expect very blue skies… and a smile on your face for four to five hours,” he says.
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How exactly psilocybin interrupts the headache cycle is an open question. Brain scans suggest it may help reset 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 acid amide, derived from Morning Glory seeds, also have indole rings). The good news for patients is that, following a 2018 decision by the U.S. 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 trial of psilocybin for pain relief. Although only 10 CH patients participated, half of those given psilocybin instead of 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 likely has nothing to do with the psychedelic experience. In theory, that 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 distracts from studies of psilocybin for treating depression and mood disorders, which are much more common and potentially more lucrative.
All this means that the trials and tribulations of CH patients are likely to continue.
Mark Honigsbaum is the author of The Pandemic Century: One Hundred Years of Panic, Hysteria, and Hubris