- Aug 31, 2016
- Frostbite Falls, MN
Bob Wold of ClusterBusters
How psychedelics helped me deal with excruciating cluster headaches
by Giancarlo Ditrapano | VICE
For sufferers like me, mushrooms and 5-MeO-DALT offer relief where traditional medications can't.
Known also as "suicide headaches," because sufferers are known to take their own lives, cluster headaches are considered by many to be the most painful condition known to science—described as more painful than broken bones, any degree of dermis burn, and even child birth. Yes—mothers have essentially said, "I would rather eject another small human being from out of my undercarriage rather than have one of those things again."
They're not migraines—rather, they're more like a series of short headaches that occur in patterns of one or more each day for weeks or months on end (thus the "cluster" designation). I've had them for 25 years, since I was 16. The pain is indescribable, but here I go describing it to you anyway: If you have ever stubbed your toe, then you know how bad that kills. A cluster is like that, except it happens just behind the eye, right in the temple. The pain camps out, throbs there for at least 30 minutes and as long as two hours. A taste of earthly hell.
Scientists don't know what causes them, and typical painkillers and narcotics usually don't help. Believe me: In efforts to deal with this pain, I've orally ingested, injected, snorted and/or smoked oxycodone, hydrocodone, fentanyl, demerol, dilaudid, cocaine, heroin, codeine, morphine, all to no avail. You get very high, sure, but the pain is still there, at full strength, almost made worse because the dope just adds an unpleasant weirdness to the scene.
I've tried dropping dumbbells on my foot in an attempt to displace the pain. I've banged my head against the wall, then the floor, then the wall again. I've slammed bags of ice against my temple, leaving my face reddened and bruised. I've fantasized for hours about sparkling knives and imagined the relief of filleting my temple open like a raw chicken breast, as if the pain would bleed out. Yes, it's that dramatic.
To put it simply: Treatments are elusive. "These are very hard and very painful headaches to treat," said Dr. Mark Green, director of headache and pain medicine at Mount Sinai School of Medicine, "and the agents that we usually use work sometimes, but they sure don't work all the time."
Doctor-sanctioned treatments for clusters include Imitrex (an injectable medicine that narrows the brain's blood vessels) and rapid oxygen inhalation. They're good at stopping attacks, but not preventing them. I've tried them, too—but nothing has provided me with even a 100th of the relief that psychedelics have.
A couple of years ago, I discovered Cluster Busters, a ground that advocates the use of alternative (though, sadly, illegal) cluster treatments. It was founded by Bob Wold, who broke a cycle of clusters using psychedelics in 1998 and felt he had to spread the word. Since starting Busters, Wold said that 95 percent of cluster sufferers he's come across who have been treated with psychedelics never go back to prescription drugs again.
With thousands of members, Cluster Busters offers a strong online community that helps cluster sufferers seek relief from their condition through psychedelics. The cure they advocate comes down to replacing doctor-prescribed prescription drugs with hallucinogens like mushrooms, LSD, rivea corymbosa seeds, or 5-MeO-DALT.
There's scant medical proof that they work—most everything we know about how psychedelics treat clusters is anecdotal. One small interview-based study showed promising results, but because psychedelics are hard to refine to medical purity and offer little profit motive for pharmaceutical companies to investigate them, Green said, forming large-scale regular psychedelic studies is difficult. And without them, case reports don't offer enough conclusive evidence that it's psychedelics themselves that are relieving symptoms.
"I've been doing headaches for more than 40 years, and I've got to tell you, I have story after story of people who say, 'I took this, and it made it go away,' and then, of course, it never held up in the long-term," he said. "I'm not being negative, and certainly I have a number of patients who experiment with mushrooms, grow them, and take various compounds, and some of them report efficacy, but I don't know, and I don't know about their safety either." To restate the obvious: These treatments can be risky, and they haven't been proven by medical science to work.
But Green also emphasized that "people with clusters have a real, genuine suicide risk," and that he's "certainly understanding and sympathetic that someone who just can't get relief with existing products would be willing to do most anything to get rid of the attacks."
Personally, shrooms and DALT are what work for me. Three years ago, the first time I dosed on mushrooms instead of reaching for Imitrex, I knew I had found my answer. Instead of feeling like my head was an eggshell that a cluster could crack into at any second, I felt like I had a forcefield around my skull. My life has been shut down annually by clusters, with anywhere from one to seven headaches daily for periods that come once a year and last from one to six months. Discovering a way out of this hell cycle was as awesome as what I imagine seeing an alien or finding God would be like.
Shroom dosage varies based on how one elects to manage their condition. One can micro dose by putting a small piece under their tongue day as a preventative method. A somewhat larger dose (a stem or two) can be used at the onset of an individual cluster to knock it back. Or, by taking a large dose every seven days, I can "bust" my season of headaches and be free from pain until the next time it comes around. Dosing with 5-MeO-DALT is a different story (but I've found it to be the most effective treatment of all); when I feel a season coming on, I simply take 15 milligrams every five days, and my head will stay clear without experiencing any seriously debilitating trips.
What's tricky is that because psychedelics interact with prescription meds, you have to make the choice to use one or the other, and because psychedelics become ineffective if taken too regularly, if you get a cluster between doses, you're forced to grin and bear it. But the payoff is worth it.
I call the time of year in which my headaches come the mean season, and when I'm in the mean season, I am always less than ten minutes away from my home, mostly in my bed, either having a headache or anxiously preparing for one. I can't drink, I can't get high, and I can't have sex with my boyfriend, because all those things will trigger a cluster.
What's crazy is how long the psychedelic solution has been out there, waiting for me to find it. If you had asked me at one point what was the worst thing I could imagine, I would have said, "Having a cluster while tripping." Funny how the answers are sometimes in the last place we think to look. I've now been pain-free for three years. Unless you suffer yourself, you have no idea just how beautiful that actually is.