tommyD
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Anything not impossible is compulsory.
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Pennsylvania
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On this day ten years ago - July 28, 1998 - a fellow from Scotland calling himself "Flash" spilled the beans.
Flash posted a message about using "a very low dose of an LSD type substance" to stop his cluster cycles. He said he used LSD recreationally in his younger years, and his cluster cycles didn't happen during those years. He said he found psilocybin from liberty cap mushrooms more tolerable than LSD.
It was a strange idea, but Flash persisted. There was some hints the idea might not be as crazy as it sounded: there was an early study on treating migraines with LSD, the LSD molecule was similar to that of certain pharmaceuticals used for clusters and migraines, there were apparent similarities and connections to serotonin. The discussions started slow, but in 2000, others began reporting their use of psilocybin mushrooms and LSD. And most of them reported good results.
Yours truly found the CH.com board in 2001, after these very strange, scary and extraordinarily painful headaches that spring. I was sure I was dying of a brain tumor the size of a basketball, but a half-assed doctor said "migraines." I looked up migraines on the internet and quickly found I actually had something called cluster headaches. I found CH.com the same day. Like many, I studied up on this extreme and obscure disease, and the advantages and disadvantages of the various treatments.
One of these treatments looked like a joke or some kind of New Age nonsense at first, and I was skeptical. Someone calling himself Flash and some others calling themselves such light-reddish names as PinkSharkMark and PinkFloyd were discussing the "shroom treatment." But they weren't wackos - most were very rational and skeptical folks, and they had set up a web site to present everything learned so far. I decided to try it myself, and a few very mild trips on the shrooms were very effective in keeping the attacks at bay.
In August 2002, PinkFloyd (he actually had the strange and unusual name of Bob), formed an organization and invited Flash, PinkSharkMark and some others to help research the use of hallucinogens, expand and maintain the clusterbusters.com web site, and set up a private email list for organizing purposes and as a confidential forum for those who didn't want to discuss illegal treatments in public. Bob called the group the Clusterbusters, because that's what the treatment did - it busted cluster cycles. Even better, it prevented them, too.
The discussions and anecdotal reports continued. The Clusterbusters refined the use of 'shrooms, experimented with small abortive doses, developed ways to cope with hits during "detoxing" from conventional meds and the "slap-back" hits after dosing. And they found a third substance LSA (lysergic acid amide, actually a group of closely-related substances) found in the seeds of certain flowering vines was also effective at busting and preventing cycles.
Bob and the 'Busters got the attention of some serious scientists, and found a couple (at Harvard, no less) who were interested in pursuing real, honest-to- god, scientific research on the idea. Drs. John Halpern and Andrew Sewell looked at the experiences of the Clusterbusters, interviewed and surveyed some of them, and wrote up a case study review. It was published in the journal "Neurology" in 2006. Plans are now underway for clinical trials. It's a slow process, but some actual science is on the horizon.
In the meantime, hundreds of clusterheads have tried psilocybin, LSD and LSA seeds to treat clusters. How many hundreds is hard to say, but I have collected reports from close to four hundred people, and more than three-quarters of them said the stuff worked.
Over the years, as discussions and reports were posted on CH.com and the Clusterbuster's list, clusterheads learned some things about using the indole-ring hallucinogens to break and prevent cluster cycles.
They learned that the psilocybin was a more practical substance than LSD, for various practical and legal reasons.
They learned it didn't take much hallucinogen to bust the clusters, and a psychedelic trip wasn't really necessary.
They learned that the stuff seemed to work like magic at first, but one could expect a dose to be followed over the following few days by a strange hit or two, as if the Beast was fighting back.
They learned that some medications - triptans, steroids and opiates in particular - seemed to interfere with the hallucinogens.
They learned some medications and treatments didn't seem to interfere; oxygen and caffeine/taurine drinks and other treatments could be used to help wean off the conventional meds and to handle post-dose hits.
They learned that very small doses could abort individual cluster attacks.
They learned about a related substance, lysergic acid amide or LSA, found in the seeds of certain flowering vines, that could also be effective, and had some practical and legal advantages over psilocybin mushrooms.
And they are continuing to look for more things to learn, more ways to make this unlikely treatment more effective, more tolerable and more available to relieve the pain and suffering caused by cluster headaches.
So here's to you, Flash, if you're lurking out there somewhere. Don't be such a stranger... And here's to all the other pioneers who brought this to the attention of the rest of us, and to all those with the courage to try and to talk about illegal substances right in the teeth of an irrational, dogmatic drug war.
And here's to the next ten years of ending serious pain with what I think are the most effective cluster preventatives yet found.
I'm calling today "Flash Day."
-tommyD
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