When Tyler Mann first started getting cluster headaches a little over a decade ago, he'd crawl into his bathroom, turn off the lights, shut the door, and scream as loud as he could for up to an hour until the pain went away. Sometimes he'd pass out before that happened. Other times he'd contemplate suicide.
"I've had headaches where I was literally considering hanging myself from the shower rod," Mann told me. "Literally, I wanted to just wrap a belt around my neck and make it stop, several times. That's why I don't own a gun."
In the beginning, he'd get the headaches as often as six times per day, for months at a time. His doctors offered no explanation. So, like many people with more symptoms than solutions, he turned to the internet for help. That's when he discovered a Facebook group where thousands of others said they suffered from the same condition—a little-known neurological disease called cluster headaches, for which there is very little research and no known cure. They referred to themselves as "cluster heads," and each was more desperate for relief than the next. Many of them, frustrated with the lack of clinical studies, had turned to extreme methods of treatment.
According to users of the group, one thing seemed to consistently provide long-term relief: psychedelics like mushrooms, LSD, and DMT, all of which consist of Tryptamine, an alkaloid that is believed to activate serotonin receptors in the brain. The most obvious problem, though, is that all of these drugs are illegal in the United States—scheduled in the same high-risk category as heroin—which means they're far from medically proven, and the self-administered dosing and its results can be wildly inconsistent. For people like Mann, who describes this form of self-medication as "citizen science," the risk is worth it if it means not having to endure debilitating pain and suicidal thoughts on a regular basis.
"We're basically experimenting on ourselves," said Mann, an Austin-based filmmaker who's worked as a camera operator on shows like CNN's High Profits and TLC's My 600-lb Life. "We're using ourselves as guinea pigs because we don't have any other options. We can either just live in pain or we can try and fix it ourselves."
A cluster headache sufferer receiving Oxygen Therapy
Since he started taking psychedelic mushrooms as medicine about three years ago, Mann, now 37, says the cluster headaches have all but come to a halt, occurring something like every year and a half as opposed to multiple times a day. He calls mushrooms a "wonder drug." And yes, even though he's technically ingesting them in the name of science, he still hallucinates every time. "Oh, I trip balls," he said. "You get used to it. It's just like taking a pill."
Of course, not every cluster headache sufferer wants to break the law or trip balls just to get some relief—and not everyone believes psychedelics will be beneficial to them. The absolute dearth of reliable treatment options is part of the reason Mann has decided to make a documentary about what it's really like to suffer from cluster headaches. He hopes the project, dubbed "Clusterheads" and funded largely using donations from sufferers, will draw more attention to the condition and ultimately help sway the US government to invest more money and resources into studying it.
"A cluster headache is like sawing your arm off with a rusty saw with no anesthesia." — Tyler Mann
Cluster headaches, named for their occurrence in cycles or groups, were first documented in the 18th Century. In a scientific paper, the Dutch-Austrian physician Gerard van Swieten described a middle-aged patient who suffered from the condition every day at the same hour as feeling "as if his eye was protruding from its orbit with so much pain that he became mad."
The British neurologist Wilfred Harris is credited with publishing the first complete medical description of cluster headaches in 1926. In it, he observed that the attacks could last for anywhere between ten minutes and several hours and might strike patients at the same time every day, recurring for weeks and then disappearing for months at a time (these are now referred to as episodic) or in some cases, every day for years on end (now called chronic). The pain, he wrote, was "likened to a knife being driven in through a point between the outer canthus of the eye and the hair line," far more intense and debilitating than even the most serious migraine.
"Some people say it's like an ice pick going through their eyeball," Mann told me. But for him, he said, "it's more like somebody drilling into my skull through my temple and scraping around in the inside of my skull and the back of my eye."
The number of people who suffer from cluster headaches is still relatively unknown. The World Health Organization estimates that cluster headaches affect fewer than one in 1,000 adults, often developing after the age of 20 and occurring disproportionately among men. That's roughly in line with a commentary published in the Journal of Neurology & Stroke in 2015 estimating that 400,000 people in the US and 7 million people worldwide were sufferers.
Still, those numbers are likely underreported since it's not uncommon for patients like Mann to go years without a confirmed medical diagnosis. "There's thousands of other people who are just like me who have this condition who don't know what it is," Mann said. "Some of them have probably committed suicide because of it. They just didn't know what it was and were living in pain and didn't know how to treat it."
For all the pain and suffering that comes along with it, cluster headaches remain largely a mystery to the medical community today. Doctors still don't know exactly what causes it or why, and supposedly preventive measures such as deep brain stimulation—or surgically implanting the equivalent of a pacemaker in the brain—remain experimental at best and expensive and ineffective at worst.
Meanwhile, treatments like oxygen therapy, which are believed to abort the headaches essentially by inducing hyperventilation through an oxygen mask, are only short-term remedies. Plus, they can be costly, Mann says, with few if any insurance companies covering it specifically as a treatment for cluster headaches.
"Getting mushrooms is actually easier than getting oxygen, believe it or not," he said.
But it doesn't have to be that way. In the last several years, grassroots groups like ClusterBusters—a nonprofit that was started in the early 2000s by sufferer Bob Wold after he discovered hallucinogens had helped his cluster headaches—have joined an annual advocacy event called Headache on the Hill. At the event at the US Capitol next month, the so-called cluster headache sufferers will meet with members of Congress to lobby for more research and funding through the National Institutes of Health, which they believe has long overlooked cluster headaches as a serious nerve condition.
Part of the problem is that "it's not a public-facing disease," Mann explained. "It's very much in the closet." Even the name of it is particularly misleading, or at least extremely understated. If a regular headache caused by a hangover or allergies is "like getting a paper cut on your finger," he says, then "a cluster headache is like sawing your arm off with a rusty saw with no anesthesia."
So far, progress has been slow. Sufferers like Mann expect an uphill battle with the Trump administration, which may seek to roll back marijuana legalization at a time when scientists are finally started to study the medicinal benefits of hallucinogenic drugs. But there are small victories worth celebrating: A landmark 2006 Harvard University study, for example, showing that LSD and psilocybin—the psychedelic compound found in mushrooms—had benefited sufferers of cluster headaches. The study of 53 patients, which Clusterbusters took credit for as a result of their lobbying, found that 22 of 26 psilocybin users reported that the drug had aborted their headache attacks.
"It's life changing, honestly," said Mann. "Without the psychedelics, I don't even know if I would still be here on this Earth, and I have the people in ClusterBusters and the Facebook support group [to thank] for that."
As they push to be taken seriously, "cluster heads" all over the world have banded together like a ragtag group of skull-rattling outsiders, sometimes with no else to rely on but each other and their own amateur insights. In Facebook groups, on message boards, and at an annual conference, they share their own stories of pain, experimentation, and recovery—one mushroom trip at a time.
Follow Jennifer Swann on Twitter.