Cluster headache is debilitating. These citizen scientists took treatment into their own hands
Imagine a pain so severe it's comparable to a searing hot iron being jammed into your left eye socket. Imagine that this pain is not a freak event – a one time horror show story you sometimes wheel out as attention-bait at parties – but an on-going fact; sometimes occurring multiple times in a single day and every bit as debilitating, isolating and terrifying as that sounds.
This is a reality for those suffering from cluster headache. A rare neurological disease, treatment options are scarce. It means that when a trickle of those afflicted found one another on the early days internet in the late nineties and word spread that small doses – enough to get the giggles; too low for any dramatic psychedelic experience to take hold – of magic mushrooms or LSD could blunt their pain, a number began illicit self-experimentations.
WH does not advise or condone self-medicating with any form of substance. Psychedelic drugs can have serious side effects. Magic mushrooms and LSD are Class A drugs and taking, sharing or supplying them is policed accordingly. Speak to your medical professional if you're suffering from cluster headache or migraine.
Years went on and this DIY psychedelic research network grew. Over time, members crafted a close to clinical-grade protocol for using the drugs in the most effective way to dissolve cluster headache's most pernicious effects.
In 2002, Bob Wold, a US-based grandfather, founded a formalised group, Clusterbusters. This community is comprised of those compelled to share their discoveries with others gripped by the disease.
Their subsequent work is the stuff of film scripts. In 2004, they funded a study of their protocol at Harvard; a small placebo-controlled study at Yale in collaboration with the group analysing psilocybin, the active ingredient in magic mushrooms as a cluster headache treatment, was published the summer. It found that controlled dosing roughly halved the number of attacks otherwise healthy participants experienced, without serious side effects. Further research with more participants is needed for safety and efficacy to be fully understood.
Today, Clusterbusters is a powerful advocacy organisation devoted to advancing research into the disease.
Their story is the subject of Psychedelic Outlaws (Hachette, £25) the latest book from medical sociologist, Joanna Kempner. As the book hits shelves, WH spoke with the author. The below conversation has been edited and condensed for clarity.
Women's Health: What is cluster headache?
Joanna Kempner: Cluster headache is an excruciating neurological disease, widely considered to be one of the most painful phenomena you can experience – more severe than a gunshot wound or unmedicated labour. Naturally, the impact on a sufferer’s mental health is profound.
Somewhere between 50 to 70% of people with cluster headache experience suicidal thoughts during episodes – and that suicidal ideation is aimed at escaping the pain.
I can relate, to some extent, with the people I met who had cluster headache, as I have had chronic migraine pretty much all my life. Cluster headache is a diagnostic cousin to migraine and shares some similarities. But, while chronic migraine is exhausting, demoralising, and sometimes unbearable, cluster headache is very different.
WH: Can you elaborate on those differences?
JK: Migraine is common, affecting around 12% of the population. Cluster headache is rare, affecting about one to three in every 1,000 people. Each migraine attack lasts between four to 72 hours. Cluster headache attacks are shorter, lasting between 15 minutes to three hours. But they can occur up to eight times per day, often at the same time each day.
They often ‘cluster’ in a seasonal pattern. So every spring or autumn, people will have these attacks daily for weeks or months. Fifteen per cent of sufferers have a chronic form, which means they never go into remission.
As with all pain disorders, it's difficult to get a diagnosis and treatment due to multiple social, cultural, and systemic issues. Describing your pain is really challenging; there’s the fundamental issue of credibility – people don’t believe you.
Pain patients not only struggle to get adequate health care, they face significant stigma and discrimination in the process, one that can be more intense for women and for marginalised populations who often encounter additional biases and barriers.
WH: How did the way that cluster headache patients are treated impact their decision to DIY treatment?
JK: People with chronic health conditions will be familiar with many of the challenges that are described in the book. The derision that's faced when patients take ideas for possible treatments from ‘Dr Google’ to their doctor; the way they may be labelled ‘attention-seeking’ when they keep asking for help.
But there's hope to be found here, too. This is a story about finding your people, about figuring out who will support you. And for people with chronic illnesses who often find it difficult to leave the house, these networks will often be located online.
There is so much creative, innovative know-how in online support groups. Doctors can perhaps provide a diagnosis and treatment for your disorder. But they don't understand how to live with a disease, how to navigate the world. Getting that sort of peer support, and that friendship, is game-changing.
WH: Is there any way in which psychedelic drugs might impact women differently?
JK: There is a tiny little bit of research suggesting that hormones may affect the number of Serotonin 5-HT2A receptors [the brain receptors which psychedelics are understood to work on] in a person's body, and that could hypothetically affect the potency of psychedelics.
But I'd like to draw attention to how gender may affect the psychedelic experiences in social ways. Psychedelic efficacy depends a great deal on ‘set and setting,’ a person's mindset and their comfort in their environment. Will reports of boundary violations, including sexual assault, in psychedelic therapy negatively affect women's mindset? [In both medical and underground settings, sexual abuse in psychedelia is a very real issue. Read more here.]
And, statistically, women are more likely to take a serotonergic antidepressant than men. [2022 NHS figures show that women were about twice as likely to be prescribed antidepressants]. Research is on-going, but there are concerns that exposure to these drugs might blunt the efficacy of psychedelic therapy.
WH: Conversations around these sorts of drugs, of course, also have a racial component...
JK: Both pain and illicit drugs are highly gendered, highly racialised topics. The war on drugs is racist and we have reams of evidence that Black people receive less pain treatment than white people.
In the early 2000s, Clusterbusters [a mostly white group] walked into Harvard to tell psychiatrists that they were using psychedelics to treat their pain. I imagine that had they been Black people they may not have received the same reception.
WH: What is the history of psychedelics being used to treat conditions like cluster headache?
JK: One way of looking at this is that Western medicine flirted with psychedelics in the late 19th century, became more excited about them in the mid 20th century and now we’re seeing a revival of interest [the ‘third wave’ of psychedelic research.] While researching this book, though, I learned that there is a more or less uninterrupted timeline in which psychedelic substances are a central feature of migraine medication research and development.
In the 19th century, the pharmaceutical company Parke Davis learned that indigenous Mexicans used peyote buttons to treat headache. Later, in 1918, Arthur Stoll, head of the pharmaceutical division of Sandoz – the Swiss pharmaceutical company where LSD would later be discovered – synthesised ergotamine, a more stable form of ergot, a hallucinogenic fungus which grows on rye. Ergotamine sold as both a medicine that could stop postpartum bleeding, and as a migraine treatment.
In 1943, Albert Hoffman, a Sandoz biochemist, accidentally discovered that LSD-25, an ergot-derivative that he first discovered five years prior, was highly psychoactive. That same year, he also synthesised dihydroergotamine (DHE) which is still in use today as a migraine medication.
It turns out that LSD was terrific at blocking serotonin. Which is why, in 1959, an Italian neurologist decided to see if LSD might be able to prevent migraine in his patients. When it worked, he asked Sandoz,: ‘Do you have anything like LSD but with fewer psychoactive side effects?'
As it turns out, Hofmann had been synthesising a whole bunch of drugs that were just like LSD, but that didn't produce hallucinations. So, for decades, doctors prescribed people with migraine and cluster headache a drug called Sansert (methysergide), which is essentially a nonhallucinogenic version of LSD.
The triptans (the most popular of which is called sumatriptan) are the most recent iteration in this line of drugs.
So that whole line of research, everything that was coming out of that laboratory in Switzerland, was foundational to headache medicine. It's not that surprising that psychedelic drugs like LSD can treat migraine and cluster headache.
The other thing that I thought was interesting was that when neurologists found out about the work of Clusterbusters they were often like: ‘Yeah, that makes sense.’ They knew the history.
To reiterate: Magic mushrooms and LSD are Class A drugs and taking, sharing or supplying them is policed accordingly.
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