Anita Wiseman knows pain. She’s given birth and endured a brain aneurysm. None of these, she says, comes close to a cluster headache.
“I was always viewed as a drama queen, like I couldn’t handle pain. It’s just a headache, that’s what a lot of people thought,” says Wiseman, a substitute teacher from Los Lunas. “Then I had a brain hemorrhage. That was a whole different kind of pain, but I handled it. I don’t think I ever cried when the aneurysm burst. But a cluster headache can have me rolling on the floor in tears.”
Cluster headaches, or, “suicide headaches,’ as they’re nicknamed due to treatment resistant sufferers who have killed themselves, are a little understood neurological disorder, cropping up in a diverse cross section of the population. No clear pattern along genetic lines is evident as yet, and there are currently few potent, low side-effect pharmaceutical treatment options.
The pain of a cluster headache has been described as “taking a blunt stick and slowly pushing it through your eye, then continuing to do that for one or two hours.”
“I guarantee you that you have friends and co-workers with cluster headaches, you just don’t know about it,” says Dr. Andrew Sewell, a psychiatrist and neurologist who worked extensively with cluster headache suffers while on a three-year research fellowship at Harvard. “It’s as common as muscular dystrophy; a quarter as common as multiple sclerosis.”
In the world of neurological disorders, clusters are by far the most painful according to Sewell. They exceed the mental anguish imparted by migraines by orders of magnitude, and their nickname is not a glib overstatement. Not even the physical pain of amputation is comparable.
“[Migraines] are totally unrelated, except inasmuch as they’re both one-sided pains in the head,” says Sewell. “Migraine is associated with nausea and light sensitivity; CH with runny nose, droopy eyelid, tearing. Migraine goes away with sleep; CH tends to come on with sleep. People with migraines have to lie still in a dark room; people with cluster headache feel compelled to pace around, rock, and bang their heads against things.”
In 2004, after reading numerous accounts testifying as to their ability to send cluster headaches into complete remission at low, regular, non-escalating doses, Wiseman tried psilocybin mushrooms for the first time. In the United States psilocybin, LSD, mescaline, DMT, and virtually every other entheogen are Schedule 1 substances with no recognized medical use.
But Wiseman says that the psilocybin mushrooms not only worked, they worked better than any prescription or non-prescription remedy she’d tried: the first time she took the psilocybin the headaches went away, completely, for three days.
Then, a month of relief without taking anything other than psilocybin. She tested herself in that time period, taking the mushrooms only when she felt the headaches coming on. By the end of the month, she was able to take psilocybin once every 60 to 90 days, experiencing complete remission without having to elevate the dose.
Most cluster headache sufferers only require sub-hallucinogenic doses to achieve remission. Wiseman’s case was consistent with this finding, in that every time she’s taken psilocybin it’s been at sub-hallucinogenic levels, and, at most, “makes the colors on the Home and Garden channel very pretty.”
“I had little to no quality of life prior to that,” Wiseman says. “I was afraid to do things. I wasn’t able to work. We couldn’t go on vacations. Whenever I went to a soccer tournament for my kids, I had to run to the car or go hide because I was in pain. I just wished we could go home. How awful is that?”
Anita’s experience and turnaround on hallucinogens isn’t unusual in CH circles. It’s estimated by the Clusterbusters organization that 80 percent of the cluster headache sufferers who try psychedelics find near-complete relief and the attendant improved quality of life.
Though Dr. Sewell — who conducted the first comprehensive case series on cluster headache suffers who use hallucinogens therapeutically — and other researchers don’t know why psilocybin, LSD, and other entheogens work, their preliminary research suggests that some people experience remarkable therapeutic effects, if illegally.
There is a caveat, says Sewell, and that is that there have been no randomized placebo-controlled trials. While Sewell is in the final stages of a large study looking into the efficiency of LSA — a natural LSD analogue found in Morning Glory and Hawaiian baby woodrose seeds — against cluster headaches, it’s an independent effort.
“It’s hard to imagine a company interested in marketing a drug that’s long out of patent and only has to be taken once every three or four months,” says Dr. Sewell.
“Its not something pharmaceuticals are interested in because people can grow their own medicine,” says Bob Wold, a 54-year-old carpenter and business owner who’s suffered from cluster headaches for 27 years. “So we aren’t going to see any research dollars coming out of that industry.”
Wold is the founder of the Clusterbusters organization, which for the last eight years has been dedicated to pursuing medical research that documents the efficacy of psychedelics against cluster headaches.
The website is a comprehensive reference of treatment options for cluster headache sufferers, and includes cautionary notes and medical considerations for those considering using hallucinogens for relief.
While funding for the disorder is still highly limited, Wold hopes to see good research come with the assistance of his organization.
“You can get a prescription for cocaine in the United States. Heroin is still used in parts of the UK for treating pain. We are not looking to legalize drugs,” says Wold. “What we’re looking for, hopefully, is research that proves this works. Then we want to push the medical community to allow this to become a prescription medication, just like anything else. That’s our goal.”
Reprinted with permission from The Sun-News