Joe McKay tried everything medicine offered for blinding headaches that began in the months after 9/11, when the former New York City firefighter spent weeks walking through the curtains of dust and smoke at the World Trade Center.

On his worst days, McKay was incapacitated by pain every few hours, feeling as if someone had stabbed him in the eye with a toothpick. “It’s the worst pain I’ve ever felt,” he said.

Tried numerous prescription drugs without lasting relief. Doctors diagnosed him with a condition called cluster headaches, also known as “suicide” headaches for the despair experienced by the sufferer.

Then McKay heard about an unusual treatment that some cluster headache patients swore by: psilocybin, psychedelic chemical found in “magic” mushrooms..

McKay called a friend who knew someone who used to go to Grateful Dead concerts, and in his backyard in Monmouth County, NJ, he ate a chocolate that he was told contained psychedelic mushrooms. He felt a little “happy” and it seemed to keep his headaches at bay. When the symptoms returned and nothing else seemed to work, he learned about a psilocybin-specific protocol developed through a grassroots effort from cluster headache patients, then tried again.

The next day, he felt the shadow of a headache attack, but it never came. Same with the next day. McKay’s headaches did not return for a year.

The experience gave him something he hadn’t had in a very long time: hope. I can live with that, he thought. “We had something that worked.”

This is not how medicine should happen. Psychedelic drugs that are illegal are not supposed to work any better than prescription drugs, backed by a lot of research data.

But for McKay and many other people with headaches, this is the reality.

Now, science is slowly catching up to what patients are dealing with in backyards around the world, and preliminary research shows that for some, psilocybin could be a game-changing treatment for cluster headaches. Scientific studies are verifying its potential – along with other psychedelic drugs – for other hard-to-treat conditions as a mental illness.

When it comes to psilocybin and cluster headaches, some academics are aided by a basic, advocacy organization known as Clusterbusters (McKay is now on board), who developed instructions on how to grow your own mushrooms from spores (legal to buy in Pa., just don’t grow), and a protocol on how to use low, non-hallucinogenic doses to treat and prevent cluster headaches.

“There’s really compelling evidence that (psilocybin) is effective and safe and seems to help people” with cluster headaches, said Dominic Sisti, associate professor of medical ethics and health policy at the University of Pennsylvania. “There’s really no reason not to look further.”

“I prayed for death”

It’s not clear what causes the crushing pain associated with cluster headaches, nor why psilocybin might help.

Research on cluster headaches suggests that they may come from an increase in certain chemicals near a nerve that transmits information between the face and the brain, or from problems in the region of the brain known as the hypothalamus. This is also region of the brain that psilocybin appears to act onshows limited research on psychedelics.

Cluster headaches affects less than 1 in 1000 adults — including Tom, a therapist in private practice in his mid-60s who works in Montgomery County. The headaches started in December 2008 and are excruciating. In a 2020 survey, cluster headache patients reported the pain as worse than any other condition, such as unmedicated birth, kidney stones and shooting. “There were times when I prayed for death,” said Tom, who declined to give his last name to protect his professional license. “I prayed that God’s mercy would take me out.”

Over the years, he tried various prescription drugs that would work for a while until the headaches came back with a bang.

He had heard of people taking psilocybin, but as a recovering alcoholic, he was unsympathetic to illegal drugs that produced psychedelic experiences.

Psilocybin, MDMA (also known as Ecstasy or Molly) and LSD are all considered psychedelics because, at certain doses, users may experience hallucinations.

Tom learned this firsthand when he finally decided to try psilocybin in 2022. “I felt the light was brighter. The colors were clearer, more vibrant.”

He still uses psilocybin sometimes — as a way to stay pain-free longer and as a supplement to the multiple prescription drugs he takes, not as a way to get high. “I’m not here to party and have fun. To me, it’s medicine, and I really consider it medicine,” Tom said.

With gaps in knowledge about psilocybin come gaps understanding its potential risks: Although data suggest that psilocybin is generally well tolerated, people who you have bipolar disorder (or a family history of it) can expose more psychotic symptoms after taking psychedelics than people without this history.

Tom told only a few people that he was taking “magic” mushrooms and was even hesitant to share them with his neurologist. But the doctor had no problem with that. “‘I won’t put it in your file,'” he told Tom.

“I was shocked,” Tom said.

Research bottlenecks

Psychedelics like psilocybin and ayahuasca were used medicinally for thousands of years in indigenous communities. But the US has classified psilocybin as an illegal substance in the most restrictive categoryalong with heroin and LSD (another type of hallucinogen that research suggests may have some health benefits, including for cluster headaches). That’s what it does difficult to conduct research studies using psilocybin.

Despite this obstacle, scientists have been able to investigate the potential benefits of psychedelics and have generated early data showing that they may help conditions ranging from depression TO dependence TO PTSD. In 2021, a clinic opened in West Philly, offering psychedelic-assisted therapy.

That said, psychedelics have a certain “hype bubble” around them right now, Penn’s Sisti said. Some people claim drugs it will cure many diseasesalthough they have little (if any) supporting evidence.

And neither regulators nor most members of the public seem convinced they should be widely used as medicine. In August, the US Food and Drug Administration refused to approve a treatment combining MDMA with psychotherapy for PTSDand on election day, voters in Massachusetts (a fairly liberal state) rejected a yes ballot measure allows people to grow psilocybin at home.

The fact that psilocybin remains illegal to grow and use probably deters some cluster headache patients since its trial, writes Joanna Kempner in her 2024 book Psychedelic Outlaws, about the cluster headache community. An attorney Kempner spoke with said he hears from many black patients who worry about being caught by the police.

A cluster headache patient Kempner encountered was charged with a felony after police stopped him in traffic and found mushrooms in his car. (His sentence came with mandatory rehabilitation and probation, no jail time, according to Kempner’s account.)

Early dates

But many cluster headache patients who have benefited from psilocybin remain undeterred.

Over the years, Clusterbusters has pushed for rigorous research into the benefits of psilocybin, even offering to fund studies, Kempner also said. Associate Professor in the Department of Sociology at Rutgers Universitywho lives in West Philly and has had migraines since she was little.

Advocacy is starting to pay off. A 2015 Clusterbusters survey of 500 patients found that people reported that psilocybin worked as well or better than most conventional drugs. even at low (non-hallucinogenic) doses.. “People continue to report that psychedelics are the most effective treatment they’ve used, compared to all the other legal treatments available,” Kempner said.

A 2022 paper published in the scientific journal Headache tested psilocybin in 16 cluster headache patients using a randomized controlled trial – the gold standard in medical research – in which they received either psilocybin or a placebo. Research has shown that a “pulse” psilocybin dosing schedule, similar to what Clusterbusters recommends (three doses, five days apart), appears to reduce the frequency of attacks.

But the finding wasn’t a slam dunk because the results weren’t statistically significant, meaning they could have been due to chance. That’s not surprising, Kempner said, because only a small number of patients took psilocybin, too few to generate more conclusive data. But when study participants returned for a 2024 paper to repeat the pulse dosing six months later, the frequency of cluster attacks was halved — a finding which was statistically significant.

Still, research doesn’t confirm the “outrageously positive effects” people report on psilocybin, Kempner said. This may reflect the difficulty of testing headache therapies in groups, she noted: Pain comes and goes, and many patients may not be willing to take the risk of receiving a placebo drug while dealing with blinding pain, especially when it might increase. the medicine being tested at home. “It’s such a difficult disease to study,” she said.

Despite all that we still don’t know about psilocybin and cluster headaches, Kempner remains impressed by the data that patients have struggled with cluster headaches—and, even more, by how they’ve used that support to form a community.

Another way to serve

Psilocybin doesn’t work for all cluster headache sufferers, but the support around it has created a community of patients who can pick each other up when they fall and offer hope that one day, somehow, they will get relief.

“The drugs themselves, the mushrooms themselves, have woven together this incredible community of people supporting each other,” Kempner said. “That impresses me.”

Now retired from firefighting, Joe McKay has dedicated his life to what he sees as new types of service.

When cluster headaches took her life, and psilocybin helped bring her back, McKay vowed to serve this new community, fighting to give people with cluster headaches access to the drug that helped him the most.

Even though psilocybin is illegal, McKay isn’t worried about talking to lawmakers or advocating for the right to use it. “For people in my community, a lot of us, it’s psilocybin or suicide,” he said. “I shouldn’t go to jail because I just want to be pain free.” That being said, he doesn’t like being put in this trouble. “I don’t want to be an outlaw, but I am.”

For him, this job is an extension of what he did as a firefighter. “I took an oath to serve and protect the people. Every cluster headache attack is a medical emergency. How can you not help?”