Of the notion that it’s the “worst pain known to medical science,” though, Green says, “I think they’re terrible. I think sometimes people can get a little carried away.”
Even in less extreme circumstances, sufferers say the severity of the pain has changed their lives. Both Scott and Reynolds say their bosses are understanding of their conditions, and allow them to work from home. But they, and Green, know people who are unable to work because of the headaches.
Scott has had attacks while driving—particularly dangerous because of the tearing and blurring of vision that occurs. And, he says, “it’s really affected my daughter. Now any time I grimace or put my hand to my face or anything, she says, ‘Dad, are you getting a cluster?’ She’s so worried about it, it just breaks her heart to see me suffering.”
Reynolds, a chronic patient, says, “if I could write a book on how to get through this, I would model it after the Alcoholics Anonymous guidebook…It’s just too hard to explain the severity of the pain and how it takes over your life [when] you’re in a cycle. I would incorporate the five stages of grief, for sure. And then how you come to understand how to live with this.”
To live with her headaches, Cindy uses breathable oxygen, as needed. She is a believer in alternative medicine, she says. Though other cluster patients may use oxygen, too, they typically also use some sort of preventative medication, such as verapamil, and something to try to stop the pain while they’re having it. Scott stockpiles Imitrex injections for this purpose—he says his insurance company gives him a limited number each month, which isn’t enough if he’s having multiple headaches every day during a cycle. So he gets his prescription filled even when he’s in an off period, and saves the injections for when he needs them.
For Bob Wold, founder of the non-profit cluster headache research and advocacy organization, Clusterbusters, none of the medications he tried worked. “All of the different medications that people use for clusters are hand-me-downs, usually from migraine treatments, anti-seizure medications, or blood pressure medications…I had pretty much tried all of the different medications that were available, and so I was contemplating having gamma knife surgery. They clamp your head down and shoot radiation into your brain, killing off part of your brain. I had been approved for that surgery at Northwestern.”
He decided to try one last thing first, something he’d read about online. A couple doses of psilocybin mushrooms, which are classified as a Schedule I drug, broke a cycle he says he’d been stuck in for months, when nothing else could.
“I canceled the surgery and haven’t looked back since,” he says.
Clusterbusters was born from this idea, and anecdotal evidence of many cluster patients who used psilocybin or LSD to successfully stop their headaches. The organization incorporated in 2002, with the goal, Wold says, of starting more research into this treatment option, which the community calls “busting.”