Combating cluster headaches with psilocybin-containing magic mushrooms and magic truffles

When Tyler Mann (37) first developed cluster headaches just over ten years ago, he would crawl to his bathroom, turn off the light and close the door, and then scream as hard as he could for at least an hour until the pain went away. Sometimes he would faint before that happened. Other times he considered suicide.

""I have had headaches multiple times where I actually considered hanging myself from the shower rod," Mann told me. "I literally wanted to wrap a belt around my neck to make it stop. That is why I do not own a firearm.""

In the beginning, he sometimes got the headache as many as six times a day, for months on end. His doctors had no explanation for it. That is why he consulted the internet, just like so many other people struggling with more symptoms than solutions. He discovered a group on Facebook where thousands of others said they suffered from the same ailment – a neurological condition called cluster headache, about which little is known, as little research has been done on it and no cure has been found so far. They called themselves "cluster heads," and each one was more desperate for help than the last. Many of them were frustrated by the lack of clinical trials and turned to more extreme forms of treatment.

According to the members of the group, there seemed to be only one thing that offered relief for an extended period: psychedelics such as magic mushrooms, LSD, and DMT, all of which contain the substance tryptamine, an alkaloid believed to activate serotonin receptors in the brain. The most obvious problem is that these drugs are illegal in the United States, where they fall into the same very high-risk category as heroin. This means their medicinal effects are far from proven, and the self-administered dose and its results can vary greatly. For people like Mann, who describes this form of self-medication as "citizen science," the risk is worth it if it means he no longer has to suffer from the extreme pain and suicidal thoughts that occurred on a regular basis.

""Actually, we are experimenting on ourselves," says Mann, a man from Austin who makes films and does camerawork for CNN and TLC. "We use ourselves as guinea pigs because we have no other options left. We can let our lives be dominated by pain, or we can try to do something about it ourselves.""

Mann has been using magic mushrooms as medicine for three years now, and his cluster headaches occur only once every year and a half, as opposed to multiple attacks per day. He calls the mushrooms a "miracle cure." And yes, even though he technically takes them in the name of science, he still hallucinates every time. "I trip out," he says. "You get used to it. It's just like taking a pill.""

Of course, not every person suffering from cluster headaches wants to break the law simply to alleviate their suffering – and furthermore, not everyone believes in the beneficial effects of psychedelics. The enormous lack of reliable treatment options drove Mann to make a documentary about what it is like to suffer from cluster headaches. It is titled "Clusterheads" and is largely funded by donations from people with the condition. He hopes that his project will draw more attention to the ailment and ultimately lead the US government to invest more in thorough research into the headaches.

Cluster headache is so named because the headache occurs in cycles or groups. It was first documented in the eighteenth century in a scientific paper, in which the Dutch-Swiss physician Gerard van Swieten describes a middle-aged man who suffered so severely at a fixed time every day that "it felt as if his eye was being ripped out of its socket, with so much pain that he went mad.""

The British neurologist Wilfred Harris published the first complete medical description of cluster headache in 1926. Through observations, he had established that the attacks lasted between ten minutes and a few hours and that some patients experienced an attack every day at the same time, which could sometimes continue for weeks only to suddenly disappear again for a few months (this type of cluster headache is now called episodic). In other cases, a person experienced daily attacks for years (this is now called chronic cluster headache). He described the pain as "the feeling as if a knife is being stabbed between the outer corner of the eye and the hairline," much more intense and debilitating than the worst form of migraine.

""Some people say it feels like an ice pick is going through their eyeball," says Mann. But for him, it was more, he says. "Like someone drilling through my temple into my skull and scraping along the inside of the skull and behind my eye.""

The number of people suffering from cluster headaches is still relatively unknown. The World Health Organization estimates that fewer than one in a thousand adults suffers from the condition. The disease often develops after the age of twenty and is disproportionately prevalent among men. This roughly corresponds to a publication in Journal of Neurology & Stroke from 2015, in which it is estimated that approximately 400,000 people in the United States and 7 million people worldwide suffer from the condition.

However, those figures are not really reliable, because it is not uncommon for patients like Mann to go for years without receiving a confirmed medical diagnosis. "There are thousands of people who have the same condition and don't know what it is," says Mann. "Some of them have probably committed suicide. They didn't know what it was, were in pain, and didn't know how to treat it.""

Despite the pain and great suffering involved, cluster headache remains a great mystery to the medical community. Doctors still do not know exactly what causes it or what the cause is, and so-called preventive measures such as deep brain stimulation – or the surgical implantation of a pacemaker in the brain – remain experimental at best, and expensive and ineffective at worst.

Meanwhile, treatments such as oxygen therapy, where you essentially combat headaches by hyperventilating through a mask, are only short-term solutions. Moreover, it can be very expensive, says Mann, since few insurance companies cover the treatment.

""Believe it or not, it is easier to get magic mushrooms than oxygen," he says.

But that doesn't always have to be the case. In recent years, small-scale groups, such as ClusterBusters—a non-profit organization founded by Bob Wold at the beginning of the millennium after he discovered that hallucinogens helped with his cluster headaches—have joined an annual advocacy event: Headache on the Hill. During the event, which will be held next month at the Capitol, people suffering from cluster headaches will engage in dialogue with members of Congress to lobby for more research and funding from the National Institutes of Health (NIH). According to patients, the condition was not recognized as a serious neurological disorder at the NIH for a long time.

Part of the problem is that "the disease is not visible," Mann explains. "It is more or less hidden." Even the name is partly misleading, or at the very least a gross understatement. You could compare an ordinary headache, caused by a hangover or allergies, to "a cut on your finger," he says. "But then a cluster headache is like having your arm sawed off with a rusty saw, without anesthesia.""

So far, developments are moving very slowly. Patients like Mann expect a tough battle with the Trump administration, which wants to roll back the legalization of marijuana, while scientists have finally begun studying the beneficial medical effects of hallucinogenic drugs. But there are small victories that certainly deserve to be celebrated: a milestone is a Harvard study from 2006, which shows that psilocybin – the psychedelic substance in magic mushrooms – can help with cluster headaches. According to ClusterBusters, the research is a merit of their lobbying activities. Research was conducted among 53 patients, and it emerged that 22 of the 26 people who took psilocybin no longer experienced cluster headaches.

""It has changed my life," says Mann. "Without the psychedelics, I don't even know if I would still be alive, and I owe that to the ClusterBusters and the Facebook support group.""

While clearly trying to make it clear that they should be taken seriously, "cluster heads" from all over the world have united as a bunch of skull-rattling outsiders. They often have no one else to fall back on but their own community and their amateur insights. In Facebook groups, on forums, and during their annual conferences, they share their own stories of pain, experimentation, and recovery—one mushroom trip at a time.

Source: Tonic.vice.com