‘MAGIC’ MUSHROOM COMPOUND PSILOCYBIN RELIEVES CLUSTER HEADACHES. IF ONLY IT WERE LEGAL

Neurologists call cluster headaches the most painful condition known. Psychedelics offer sufferers hope, but are illegal in most places

Joe McKay tried everything for the blinding headaches that began in the months after 9/11, when the former New York firefighter spent weeks wading through the dust and smoke at the World Trade Center, whose towers were toppled in the 2001 terrorist attack.

On his worst days, McKay was in agony every few hours, feeling like someone had stabbed him in the eye with an ice pick.

"It's the worst pain I've ever felt," he said.

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He tried numerous prescription medications without lasting relief. Doctors diagnosed him with cluster headaches, also known as "suicide" headaches for the despair sufferers experience. The suicide rate for cluster headache sufferers is 20 times the US national average, according to the Cluster Headache Foundation.

Some common medications for cluster headaches have serious side effects. For example, Verapamil can cause heart rhythm problems such as heart block, which occurs when electrical signals in the heart are disrupted, or bradycardia - slower heart beat - and neurologists often give patients an electrocardiogram (ECG) to test their heart health before prescribing it.

McKay heard about an unusual treatment: psilocybin, the psychedelic chemical found in "magic" mushrooms.

He called a friend who knew someone who used to go to Grateful Dead concerts, and took a nibble of chocolate he was told contained psychedelic mushrooms. He felt a bit "blissful", and it seemed to help keep his headaches at bay.

When the symptoms returned, and nothing else worked, he learned about a specific protocol for psilocybin developed via a grass-roots effort from cluster headache patients, then tried psilocybin again.

The next day, he felt the shadows of a cluster headache attack, but it never came. McKay's headaches did not return for a year.

The experience gave him something he had not had for a very long time: hope. "I can live with this," he thought. "I had something that worked."

That is not how medicine is supposed to happen. Psychedelic drugs that are illegal are not supposed to work better than prescription medications, backed by reams of research data.

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

Now preliminary research is showing that psilocybin could be a game-changing treatment for cluster headaches. Scientific studies are vetting it and other psychedelic drugs for treating other conditions such as mental illness.

Cluster headaches are known to cause PTSD and severe depression, and psilocybin can help relieve or reduce symptoms of both.

A non-profit advocacy organisation known as Clusterbusters - McKay is now on the board - developed instructions on how to grow mushrooms from spores, and how to use non-hallucinogenic microdoses to treat and prevent cluster headaches.

"There's really compelling evidence that [psilocybin] is efficacious 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 why we ought not look into it further."

It's not clear what sets off the crushing pain associated with cluster headaches, nor why psilocybin might help.

Research suggests cluster headaches may stem from a surge of chemicals near facial nerves, or from problems in the hypothalamus. This is also the region of the brain that psilocybin appears to act on, limited research on psychedelics is showing.

In a recent survey conducted by the Cluster Headache Foundation, cluster headaches topped a list of the most painful conditions, including unmedicated childbirth, kidney stones and getting shot.

Cluster headaches affect fewer than 1 in 1,000 adults. Among them is Tom, a therapist in private practice in his mid-sixties, who works in the US state of Pennsylvania. His headaches began in December 2008, and are unbearable.

"There were times where I prayed for death," said Tom. "I prayed for God's mercy to take me out."

Over the years, he has tried various prescription medications, which work for a while before the headaches come thundering back.

He heard about people who used psilocybin but, as a recovering alcoholic, he was leery of illegal psychedelic drugs.

Psilocybin, MDMA (also known as Ecstasy), and LSD are all considered psychedelics because, at certain doses, users can hallucinate.

Tom learned that at first hand when he finally decided to give psilocybin a try in 2022.

"I felt like the light was brighter. Colours were sharper, more vibrant."

He still uses psilocybin sometimes - as a way to stay pain-free for longer, and a complement to the prescription drugs he takes, not as a way to get high.

"I'm not over here partying and having a good time. For me, it's medicine, and I really do think of it as medicine," Tom said.

There are gaps in understanding about psilocybin's potential risks: although the data suggests it is generally well tolerated, people with bipolar disorder, or a family history of it, may exhibit more psychotic symptoms after taking psychedelics than people without that history.

Tom has only told a few people he takes "magic" mushrooms, and even hesitated sharing it with his neurologist. But the doctor did not have a problem with it.

"I just won't put it in your record," he told Tom.

"I was shocked," Tom said.

Psychedelics such as psilocybin and ayahuasca have been used medicinally for thousands of years. But the United States has classified psilocybin as an illegal substance in the same category as heroin and LSD, another type of hallucinogen that research suggests could have health benefits, including for cluster headaches.

Possessing psilocybin and magic mushrooms, along with LSD and other psychedelics is illegal in most countries, including Hong Kong, and on conviction, can be punished by up to a HK$1,000,000 fine and seven years in prison.

This makes it difficult to conduct studies using psilocybin.

Despite this, scientists have investigated the potential benefits of psychedelics, and early data shows they could help conditions from depression to addiction and post-traumatic stress disorder (PTSD). In 2021, a clinic opened up in West Philadelphia, Pennsylvania, offering psychedelic-assisted therapy.

That said, psychedelics have a certain "hype bubble" around them at the moment, said Sisti. Some claim the drugs will cure many ailments, although they have little supporting evidence. And neither regulators nor most members of the public appear convinced they should be widely used as medicine.

In August, the US Food and Drug Administration declined to approve a treatment that combined MDMA with psychotherapy for PTSD, and voters in the state of Massachusetts rejected a ballot measure to allow people to grow psilocybin at home.

The fact that psilocybin remains illegal to grow and use probably deters some cluster headache patients from trying it, writes Joanna Kempner in her 2024 book Psychedelic Outlaws. One advocate Kempner spoke with hears from many patients of colour who worry about getting caught by police.

One cluster headache patient Kempner met was charged with a felony after police pulled him over for a traffic stop and found mushrooms in his car.

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

Over the years, Clusterbusters has pushed for research into psilocybin's benefits, offering to fund the studies itself, said Kempner, who is an associate professor in the Department of Sociology at Rutgers University, and has had migraines since she was a child.

The advocacy is starting to pay off. A 2015 Clusterbusters survey of 500 patients found people reported psilocybin worked as well as or better than most conventional medications, even at low, non-hallucinogenic doses.

"People keep reporting that psychedelics are the most effective treatment they've used, compared to all the other available legal treatments," said Kempner.

A 2022 paper published in the scientific journal Headache tested psilocybin on 16 cluster headache patients using a randomised controlled trial in which they received either psilocybin or a placebo. The research showed a "pulse" dosing schedule of psilocybin, similar to what Clusterbusters recommends - three doses, five days apart - appeared to reduce the frequency of attacks.

The results were not statistically significant: they could have been due to chance. This isn't a surprise, said Kempner, because only a few patients took psilocybin, not enough to generate more convincing data. But when the study participants returned to repeat the pulse dosing six months later, the frequency of cluster attacks was cut in half - a finding that was statistically significant.

Still, research isn't confirming the "outrageously positive effects" people are reporting from psilocybin, said Kempner. That may reflect the difficulty of testing therapies for cluster headaches, she noted: the pain comes and goes, and many patients may not be willing to take the risk of getting a placebo drug while they are experiencing blinding pain, especially when they could grow the drug being tested at home.

"It's such a hard disease to study," she said.

Despite all we still do not know about psilocybin and cluster headaches, Kempner remains impressed by the data cluster headache patients have fought to get - and even more by how they used that advocacy to form a community.

Cluster headache sufferers self-harm, commit suicide, take dangerous prescribed medicines, and deal with cluster-induced PTSD, suicidal thoughts and severe depression. For them, the potential dangers of microdosing psilocybin seem laughably insignificant.

Psilocybin does not work for everyone with cluster headaches, but the advocacy around it has created a community of patients who can pick each other up when they fall, and offer hope that someday, somehow, they will get relief.

"The drugs themselves, the mushrooms themselves, have knitted together this incredible community of people who support each other," Kempner said. "That is what impresses me."

Now retired from firefighting, McKay devotes his life to what he considers new types of service. When cluster headaches took his life away, and psilocybin helped give it back, McKay vowed to serve this new community, fighting to get people with cluster headaches access to the treatment that helped him the most.

Even though psilocybin is illegal, McKay does not worry about talking to lawmakers or advocating for the right to use it.

"For the 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 said, he does not like being put in this predicament. "I don't want to be an outlaw, but I am."

To him, this work is an extension of what he did as a firefighter. "I took an oath of office to serve and protect the people. Every single cluster headache attack is a medical emergency. How do you not help?"

Additional reporting by Simon O'Reilly.

If you have suicidal thoughts, or you know someone who is, help is available. For Hong Kong, dial +852 18111 for the government-run Mental Health Support Hotline or +852 2896 0000 for The Samaritans and +852 2382 0000 for Suicide Prevention Services. In the US, call or text 988 or chat at 988lifeline.org for the 988 Suicide & Crisis Lifeline.

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This article originally appeared on the South China Morning Post (www.scmp.com), the leading news media reporting on China and Asia.

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2024-11-20T10:35:27Z