The Cut’s guide to self-improvement without spending a million dollars.
It’s 5:30 in the morning on a Friday, and I’m rolling a massive joint with one eye open. On my desk is a fresh cup of green tea with two tea bags, and tossed onto the bed is my phone with several Safari pages open to the term cluster headache. I am in a manic tailspin of despair. Pretty soon, the headache will take the vision in my right eye. (It’s already seized my left.) Soon after that, I’ll be utterly crippled. I focus intently on rolling the joint.
When the task is complete, I do several things in swift succession. I grab the tea bags and press out the remaining hot liquid. I lie flat on my back and swing one tea bag onto each of my closed eyelids. Trying hard not to shift them, I take the rolled joint to my lips, light it blind, and take tiny little puffs.
By now it is 5:45 a.m., I am smoking a joint in my underwear as the sun comes up, and I have two bags of hot tea weeping onto my closed eyes. All I can think about is the agony in my head. For what must be the hundredth time this month, I am acutely aware of how unhinged I’ve become.
Three or four hits of the joint later, I stub it out on my desk. It has done nothing, and the taste of the weed is making my nausea worse. I remove the bags, hoping they’ve made my eyes less puffy. I’ve cried every day for the past three weeks. Even for a particularly emotional person, this is too much. I look battered.
I keep my eyes closed, masturbate, cry some more, consider suicide, twist and turn, press my hands to my forehead with such intensity that I worry I’ll crush my own skull, and eventually, finally, I fall asleep. I wake up two hours later to my alarm demanding that I get ready for work.
I have never felt more exhausted and powerless. And I know tomorrow I’ll go through it all again.
If your right arm becomes numb, some Googling will probably lead you to believe that you’re having a stroke. If you are having shortness of breath, the internet medical community will tell you you’re dying. Misdiagnosis is a common consequence of haphazardly looking up symptoms of illnesses, but occasionally this practice can save people’s lives, or at least greatly reduce pain. When there is no hope to be found in professionals, online forums written by people who have visited your own private hell are sometimes all you have.
I endured a decade with debilitating headaches. It wasn’t until this year, when the situation had gotten dire, that I started spending my nights researching what I felt were disparate symptoms. Inevitably, I began to find things like this:
The headaches come in cycles, sometime multiple times a day, and an attack can last for up to 90 minutes. It’s debilitating to the point where cluster headache patients cannot function normally in society — how do you tell your boss you need to take an hour off while you suffer through excruciating pain? Modern medications — from opiates to steroids to neuro-implants—are, at best, minimally effective. There is no known cure. The suicide rate for those with the disease is 20 times the national average (PDF), according to a report published by the Multidisciplinary Association for Psychedelic Studies (MAPS), a 501(c)(3) non-profit research and educational organization dedicated to expanding the usages of psychedelics and marijuana.
Im a 26 year old male and Ive been suffering from this straight up evil condition for…wow 13 years now … And i just have to say its such a relief just to find other people who know about it. I thought i was cursed or something for the longest time. Nobody else in my life understands. I can almost hear peoples judgments when I’m having an episode and can’t function, and all i can say is … “sorry i have a headache.” It just doesn’t cover it. Thank you for spreading awareness and being supportive.
Jerry Callison, a lifelong sufferer of what I learned were called cluster headaches, told me on the phone that when his daughter was near 6 years old, she drew a picture of him crying in his La-Z-Boy while she drew herself crying in a corner behind him. “[Cluster headaches have] broken up families, relationships, and marriages because the partner just didn’t want to go through the drama and everything that goes with it.” He continued: “One of the biggest things that cluster [sufferers] go through is the feeling of being alone. We just feel like we’re the only ones.”
Because only about one in 1,000 people suffers from cluster headaches (or CH, as many are starting to call them), the forums and sites to which cluster patients post are an incredibly close-knit and supportive group of people. When I reached out to users on a particular CH forum for help with this story, I was flooded with emails. I spoke on the phone with one older man who had been suffering from CH for over 20 years (and wished to remain anonymous). He explained with resignation that cluster headaches “literally make it impossible to live your daily life.”
The forums and message boards and blog posts described what I was going through to such a precise degree that I felt like I’d found a second family. My doctors, who had historically told me that I suffered from regular migraines or headaches connected with my menstrual cycle (at one point I was told they would be more or less cured by taking birth control), had misled me. This wasn’t necessarily their fault, given the short bursts of time the cluster headaches lasted — two- to three-month periods. But the severity was so intense that there had to be something I was missing. There had to be a rock I’d left unturned.
Many refer to cluster headaches as suicide headaches, and I was starting to feel like I was running out of time to cure mine. But then, with the help of one of these specific forums, I found the miracle drug.
In 2006, the medical journal Neurology published a study titled “Response of cluster headache to psilocybin and LSD,” wherein 53 cluster-sufferers were interviewed about the use of “magic mushrooms” and LSD to treat or eradicate their illness. Over 50 percent of the subjects studied revealed that one dose of psychedelics caused total cessation of their headaches, while about a quarter said that the drug aborted a headache mid-attack. Though the study examines only a very small population of cluster-sufferers, its results are matched and furthered all over the internet in personal testimonies. Researching the efficacy of psilocybin treatment for cluster headaches is impossible in the United States because of its Schedule I status, but that doesn’t mean sufferers can’t stage their own investigations.
One of the best forums on the web for cluster-headache sufferers — especially those who are interested in using psilocybin as a treatment — is Cluster Busters. Founded by Bob Wold, a self-described “cluster head,” CB is a nonprofit organization that provides resources on the use of psilocybin as a method to cure or treat cluster headaches, a.k.a. “busting.” The forums require a username to log in, but once there, you’ll find an entire world of people who have been helped by mushrooms. One contributor wrote that he has been taking a preventative dose every 60 days for over four years now, and he’s spent “the vast majority of the last four years completely pain-free.”
People visit Cluster Busters with questions about growing mushrooms, how to properly dose themselves, alternative treatments outside of psilocybin, and pleas for support during their cycles. When you’re deep into certain threads, it can be difficult to grapple with the fact that this alternative treatment has worked for so many people, yet so little can be done to study it. Researchers believe that cluster headaches originate in the hypothalamus (the part of the brain associated with our circadian clock), and when a sufferer is dosed with mushrooms, the active psilocybin manages to slow blood flow to the area, preventing the onset of a cluster attack. But for obvious reasons, all that doctors can do is suggest this treatment, and then in the meantime prescribe pills that might not have much effect.
Around the time of my cycle this year, the one that nearly drove me to suicide, I spoke on the phone with Dr. Jason Rosenberg, the director of the Johns Hopkins Headache Center, about how he treats patients who come to see him with cluster-headache symptoms.
“I’ve not had any of my own patients attempt to commit suicide, but the very first question when I’m dealing with a cluster patient is to ask if they have a gun at home, is the gun locked up, who has the key, do they have a safety, is it registered with bullets in it,” he told me. “People do stupid things during their cluster headaches; they may not actually mean to kill themselves, but they just want the pain to stop.”
One of the biggest problems with CH, Rosenberg explained, is that so many people are misdiagnosed and given medication that would never work on a cluster. I’d been put on everything from Imitrex to Topamax to — during a particularly tough period — Vicodin, just to take the edge off what was going on behind my eyes. “I think the most important thing for patients to do is find a headache subspecialist rather than a general neurologist and get on one of the cluster headache websites, and in a day they will know more than most general neurologists,” Dr. Rosenberg said.
Would he tell a patient that there’s a chance magic mushrooms could help them? Is that even allowed? Yes and no. “When I first see a patient, I give them the range of options,” he explained to me. “I say, ‘Look, here are the standard options. They sometimes work great, they sometimes don’t.’ If those don’t work, I say that here are some trials going on, that some patients are resorting to hallucinogens, and that some of them do well and some don’t. That’s basically all I can say.” In one of the crazier things I’d heard about cluster headaches since I began my trip down the rabbit hole, Dr. Rosenberg explained that right after the collapse of Silk Road, the former online black market for illegal drugs, he had an influx of his patients desperately trying to reach him to be put on other, legal medications that were not, he presumes, coming from the dark net.
Those other medications do exist. Many sufferers are helped by hooking themselves up to oxygen tanks during attacks; others have found steroids can be effective. There is never enough funding put into rare diseases to provide a range of potential treatments, Dr. Rosenberg told me, but there are a few trials that are picking up momentum. One option sounds eerily like medicine of the future: “For chronic cluster, a small little gizmo gets implanted under your gum to a wire that goes up to a cluster of nerves behind the nose, and during a cluster headache, you can hold this little remote-control gadget up to your face and that will turn off the cluster headache,” Rosenberg explained. “The initial results look like if you do that repeatedly you end up with fewer headaches over time, so not only will it treat individual headaches, but it will reduce the number of headaches you end up getting.”
The night that I cured my migraines ended with me taking a cab to the ER at five in the morning. By the end of June last year, I was getting cluster headaches every night at 4 a.m., sometimes twice a night. I was so desperate that I’d ask strangers for a mushroom connection after five minutes of conversation. The Cluster Busters forum had given me hope that I would survive this thing after all, just so long as I was able to dose myself, which I now try to do once every three or four months.
A compassionate friend who is an advocate of alternative medicine came through, giving me ground-up mushrooms for tea, as well as an old library book called LSD, Man, & Society. “This might be of interest to you,” he’d said while putting a sealed jar of a brown, powdery substance into my palm.
After Friday-night drinks with a friend, I blended the powder into tea at the bar and drank it down like it was water from the Fountain of Youth. I spent the evening in and out of friends’ houses and cabs, finally coming down from my trip at around 2 a.m., when I put my head onto my pillow and quietly said a prayer. There were only two hours until my headache was scheduled to set in.
Like clockwork, at 4:15 a.m., I woke up to a piercing pain in my left eye socket, as if someone were inserting a hot poker straight through to my brain. In ten years, I had never experienced pain like this, and I wailed uncontrollably, gasping for breath on the floor. At some juncture, I put on shoes, walked out my front door, and with my eyes closed, hailed a cab to the hospital. I stayed in a hospital waiting room for an hour, crying and blowing out stiff breaths like a madwoman, until — just like every other time — the pain became a shadow aura around my head, and I felt steady enough to go home. I sat on my stoop until sunrise, distraught at the thought that the mushrooms hadn’t helped and I was back to where I started.
I haven’t had a headache since that night.
Lots of cluster-headache sufferers end up with PTSD from their illness, even if the headaches go into remission. Callison told me that he scored an 88 on the PTSD test, and that even though he’d been mostly pain-free for ten weeks, he stays active on CH forums as a way to focus his attention. Clusterheads fear that the headache will come back and ruin their lives all over again, no matter what method of self-medicating worked in the past.
Mushrooms worked for me. 5-MeO-DALT, a legal but not-FDA-approved synthetic tryptamine you can buy online, worked for Callison. But the worst sufferers — sometimes getting hits eight or nine times a day — are eager to take CH out from the fringes of medicine in order to find a less scandalous source of relief. “There are as many people with cluster headaches as muscular dystrophy,” Dr. Rosenberg told me, “and while muscular dystrophy is horrible, we put all this money into it, and as of yet, there have been no promising treatments.”
Whichever science sufferers turn to to keep hope alive, there is a sense of camaraderie among the margins. “You can’t let this thing control your life,” one clusterhead told me over the phone in September. “You have to live between the hits.”