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.”
“Over the last 10 years, I have talked to thousands of people that have used these treatments, and for the most part, when people try them, they usually never go back to conventional medication,” Wold says. He also notes that the dose required for treatment is not enough to cause someone to hallucinate—“it’s normally starting off at approximately a quarter of a recreational dose,” he says.
Clusterbusters partnered with researchers at Harvard University, and published a case series in the journal Neurology, in which they interviewed 53 cluster patients who used LSD or psilocybin to treat their headaches. Most found the treatment effective in stopping the headaches and lengthening the remission periods between cycles. A small pilot study—just five people—followed, in Germany, where researchers used bromo-LSD, a non-hallucinogenic form of the molecule. It was 100 percent successful, Wold says.
Green is slightly less enthusiastic about the treatment. “No one should quote the efficacy of the trials, because they’re ongoing,” he says.
Research on hallucinogenic treatments is now at the point where it would need a larger clinical trial, and Clusterbusters has branched out into other research, including working with Yale University on surveying the efficacy of the many medications cluster headache patients use. The organization is also working on getting a genetic study underway to investigate the possibility that the headaches come from expression of a certain gene. Wold says some of the researchers he’s worked with “think it may be an epigenetic effect, that [the psychedelics are] actually changing the way the genes express themselves, telling your body to stop sending the signal for cluster headaches.”
Clusterbusters has become a hub for the cluster headache community’s advocacy work as well. The organization worked with the Substance Abuse and Mental Health Services Administration (SAMHSA) to develop a fact sheet on cluster headaches for workers on their suicide hotlines. Partnering with the Alliance for Headache Disorders Advocacy, Clusterbusters has sent a delegation to an event in Washington, D.C. called “Headache on the Hill” for the past two years. There they arrange visits with senators, congressmen, and government agencies, asking for more funding for research.
Wold says the group is also seeking orphan drug designation from the Food and Drug Administration, a status that provides incentives for developing drugs for rare diseases. According to the FDA website, orphan drug status is for "diseases/disorders that affect fewer than 200,000 people in the U.S., or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug." Wold says there are more than 200,000 cluster headache sufferers, but not enough to be particularly attractive to pharmaceutical companies without orphan drug status.
"Our numbers are in a real grey area. It's just a real bad area for us to be in," he says.
Reynolds, who has attended Headache on the Hill, says she thinks the event also serves to ease patients’ feelings of isolation.
“Cluster headache patients get empowered by a bond with another cluster headache patient because we can finish each other’s sentences, when others can’t understand,” she says.
“Everyone hears the word ‘headache’ and they say ‘migraine.’” Scott agrees. “There’s a whole set of assumptions that they make. The first thing they’ll say is, ‘You need to take something and go lie down in a dark room.’ Lying down actually makes it worse. Light and sound have no effect on these, whereas for migraines, people are very sensitive to light and sound.”
Clusterbusters’ guide for SAMHSA cautions people not to compare clusters to migraines. “Just the mention of a connection can cause the caller increased anxiety and anger,” it reads.
Reynolds takes a different view of misunderstandings she’s encountered. “When you share something with a familiar word [like ‘headache’], the person that you’re having a conversation with wants to acknowledge that they understand. So they’ll say, ‘I’ve had a cluster headache,’ or, ‘Have you tried Advil?’ It’s very discouraging, probably, to the patients, but the people that we’re sharing with are trying to be helpful. This is just wonderful human nature, isn’t it?”