Imagine a hot poker inside your brain, pressing hard on the back of your eye.
That"s how Bob Wold describes a "cluster headache": a rare and poorly understood disorder he has suffered for the past 40 years.
The hour-long attacks four or more a day occur in "clusters" that drag on for up to three months. Wold has seen neurologists, chiropractors and acupuncturists, tried more than 70 drugs, had teeth removed and root canals, and considered brain surgery.
Nothing helped for the first 20 years, until the day the strait-laced, middle-aged construction contractor tried psilocybin the active ingredient in "magic mushrooms" an illegal drug he had previously thought "was just for people who fried their brains." Ever since, Wold, now 65, has relied on periodic low doses of ""shrooms" to keep his excruciating headaches at bay.
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Cluster-headache sufferers are renowned among headache doctors for their desperation. "You'll eat shoe polish if you think it will help," one respondent wrote in a survey. Patients call the headaches more painful than childbirth, gunshot wounds and kidney stones. They also commit suicide at about three times the rate of the general population, University of West Georgia psychologist and researcher Larry Schor said.
"The pain is so intense that I"ve had some seemingly psychotic thoughts during attacks," said Schor, who has suffered from the disorder since 1983. "Like maybe if I could take a pliers and start pulling out molars, or if I hammered in the smallest drill bit near my eye, that could relieve the pressure."
On average cluster headache sufferers wait more than five years before they are properly diagnosed, after which prescribed drugs often fail and may also have serious side effects, including rebound headaches, which can worsen headache pain, due to medication overuse.
Yet "clusterheads," as some patients call themselves, today have new reasons to take heart because of the dogged efforts of Wold and Clusterbusters, an activist group he founded in 2002. The organization has a mailing list with more than 11,000 members and a website with advice on everything from suicide prevention to how to sign up for new clinical trials to how to get discounts on new medications to how to obtain, store and grow magic mushrooms for treatment.
Clusterbusters" out-of-the-box efforts on behalf of its pain-wracked members are "the stuff of movies," said Rutgers University sociologist Joanna Kempner, who is writing a book on the group. She compares the clusterheads to the 1980s HIV activists who also boldly experimented with unapproved drugs.
Activists have won the help of key allies in academia and pharmaceutical industry to study the effectiveness of magic mushrooms and LSD.Quoted From: https://www.washingtonpost.com/health/cluster-headaches/2021/04/02/66ac73f0-8cdc-11eb-9423-04079921c915_story.html