By Bob Wold
One understudied condition for which small doses of psychedelic substances such as psilocybin may be beneficial is cluster headache.
As founder and executive director of the advocacy group Clusterbusters, I have seen firsthand, as a patient and an activist, that, despite its modest name, cluster is far from “just” a headache. It is a chronic pain condition that lasts “on” and “off” for months or years, often with no hint as to its origin. Estimates suggest that one in 1,000 people – which equates to over 332,000 Americans – suffer from cluster headache.
There is no cure for cluster headache, and no known treatment exists with reliable efficacy rates. The one treatment that appears to offer effective, predictable, and long-term relief is small doses of psychedelics.
Cluster is one of the most painful experiences a human being can endure. The typical patient is diagnosed in their mid-twenties and experiences excruciating and debilitating attacks that can last anywhere from one to three hours and occur four to eight times per day – often for decades. These clusters tend to occur in six-week to three-month stints, one to two times a year, often at a change of seasons. The largest cluster headache study collected data from 1,604 cluster headache patients. Twenty-five of these patients had also experienced a gunshot wound. All 25 ranked their clusters as much more painful than their gunshot wound.
The pain of cluster headache is akin to being shot in the eye four to five times a day. The pain is not only debilitating, but it is often literally unbearable. One study found that 55% of American cluster headache patients have had suicidal thoughts and that half of them have demonstrated self-injurious behavior during attacks. The percentage of cluster headache patients that have attempted suicide is large enough to earn the nickname of “suicide headache.”
Psychedelics have been found to have profound and lasting positive effects on those suffering with cluster headache. Psilocybin – a naturally occurring fungal compound – is the most frequently used and LSD might be the most effective of all psychedelics for cluster-headache treatment.
Most commonly, “microdosing psychedelics” means taking a minuscule amount of psychedelic substance (e.g., 5mcg of LSD) two or three times per week to boost mood and creativity. The resulting change in behavior is almost imperceptible; there is no trip.
Based on my personal experience with cluster headaches and cluster headache patients, an effective amount of psychedelics for cluster headaches often begins at a higher dose than the standard microdose (e.g., 20mcg of LSD) and can increase depending on how effective the patient deems the dosage to be. Thus, it may be more accurate to refer to these doses as “large microdoses” or even “minidoses.” A common regimen for cluster headaches is once every five days. Many sufferers of cluster headache – often called “clusterheads” – have said that similar regimens cause their pain to vanish for days, months, or longer. They have also skipped a headache cycle altogether by using one preemptive dose. Clusterheads have also found that small doses of psychedelics minimize the effects of cluster-induced PTSD symptoms that they (and sufferers of other chronic pain conditions) endure. This treatment of PTSD symptoms occurs as a side effect of treating their cluster headaches in the comfort of their own home. Psychedelics not only remove the pain, but also the invisible scars.
The small doses of psychedelics used to treat cluster headaches are usually enough to produce some felt effects, often described to me as a two-beer buzz. But these are still far less noticeable than the effects of a recreational dose. Patients may also experience fewer side effects than they do with their prescribed medications. Mood-wise, a dose to treat clusters may provide the patient with slightly brighter blue skies for a few hours.
The benefits of psychedelics to cluster headache are indisputable. But there is one problem: sufferers must break the law to find relief. The legal status of psychedelic substances also erects regulatory barriers to research into psychedelic treatments for cluster headaches. Yet, despite the evidence that psychedelics have the potential to treat cluster headaches and a host of other intractable health conditions, the Drug Enforcement Agency (DEA) seems to be headed the opposite way of legalization: on January 14, 2022, it proposed adding five new psychedelic molecules to Schedule I of the Controlled Substances Act.
If the DEA will not help to make psychedelics more accessible for cluster headache patients and researchers, Congress should do so. With the current direction of psychedelic treatment approvals, cluster headache patients are facing years before they can stop breaking the law to get effective relief.
Bob Wold is Executive Director of Clusterbusters, Inc.