Cluster headache: Scots patients risking prosecution with illicit drugs

In common with many other, relatively rare conditions [it affects 65,000 people in the UK] research is limited and so it follows, treatments are too.

However, an increasing number of patients are finding relief from a natural but illegal drug that was shown in a recent UK study to be as effective as conventional treatments in treating depression.

Many have turned to magic mushrooms, prompted by positive testimonies in social media groups and some small-scale studies suggesting psylocibin - the active, psychedelic compound - may be able to control the intensity and duration of their headaches.

Most have no history of drug taking but are prepared to flout the law to ease their debilitating symptoms.

"I was never drawn to magic mushrooms in my teenage years or twenties. It's never been something I wanted to do recreationally," says one Scots patient who spoke to The Herald on condition of anonymity.

"It's illegal and I very nervous but every new person who came on to the social media groups was talking about it."

The woman, who is married with children and in her thirties, began experiencing cluster headaches six years ago and says they would start at the same time every day. During one attack her husband took her to A&E after finding her lying, sobbing on the bathroom floor.

"I've had children with only gas and air and I would 100% rather go through a labour," she said.

"It's as if someone is stabbing a hot poker through your eye or into your temple. You pace and rock and scream into pillows.

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"With a migraine you can kind of close of your eyes and go into a dark room and get relief but you can't really do that with clusters. 

"The do think there could be a genetic element which terrifies me - it's just the worst thing you could give to your kids."

Cluster headache is characterised by recurring bouts of excruciating headaches on one side of the head. 

Most patients experience episodic attacks that last from four to 12 weeks and each can range from 15 minutes to several hours.

It usually onsets after the age of 30 years, and is more common in males than females by a ratio of around 6:1.

Experts say stopping the pain during an attack is difficult because it becomes extremely severe very quickly. Oxygen is sometimes given if the headache is treated at an early stage and drug called triptans can also reduce the pain.

The Scots patient says she decided to try mushrooms because she was unhappy with the side-effects of the prescribed drugs.

Under the Drugs Act 2005 possession of magic mushrooms is a class A offence punishable by a seven-year prison sentence. 

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In 2019, Denver made history as the first U.S. city to decriminalise hallucinogenic mushrooms for personal use. Two year on, police said the rampant abuse feared by opponents has failed to materialise.

Patients in the UK are exploiting a loophole to buy mushroom spores online. They do not contain any psylocibin and therefore are not under the schedule of controlled drugs, however the growing process is illegal.

"You can buy spores but you are not meant to grow (mushrooms) from those spores," said the Scots patient.

"It takes about eight weeks to grow them and you can buy the growing kit legally. It can become contaminated really easily so you have to be very careful and I'm not particularly green-fingered but I managed to get a good amount. 

"There is a lot of advice online and they recommend between one gram and one-and-a-half grams of dried mushrooms.

"I took the first dose in August and after five doses it did break the cycle. I can only describe it as feeling a little bit tipsy, but in no way hallucinating."

She says she was also taking 10mg of Amitriptyline, an antidepressant medicine which is sometimes prescribed and was on a vitamin D regimen as there is some evidence it may help prevent attacks.

"But I had been doing that for at least a couple of months at least by the time I tried the mushrooms and it seemed to be the psylocibin that broke it.

"It annoys me that I'm having to do illegal things. Twice a GP prescribed me drugs and they are sitting in my bathroom cabinet un-opened because I looked into them on forums and the side-effects were horrendous. 

"There are no side effects with psylocibin. Obviously you have the age-old thing where there is no money in it for the pharmaceutical firms."

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An exploratory study, led by researchers from Yale School of Medicine, published earlier this year found that a single dose of psylocibin reduced migraine frequency by 50 percent for a least two weeks. 

The findings are in line with another study, by the same team that found that it was more effective than conventional treatments for treating cluster headaches. Four other studies have now been launched at Yale.

Another small-scale study by Imperial College London's Centre for Psychedelic

Research found psylocibin is as good at reducing symptoms of depression as conventional treatment.

Psylocibin seems to work on receptors in the brain associated with "re-ordering" the way we think about things. Participants reported feeling "recalibrated, reset like they haven't for years" and "enjoying life".

Bob Wold, director of international support group Clusterbusters, who is based in Chicago, says patients have been using psylocibin as a treatment for severe headaches for decades. 

He said: "It was a young Scotsman that brought up the idea of psychedelics possibly working to treat clusters to our online community back in 1998.

"Just like many pharmaceutical treatments, we really don't understand why this works so well. 

"Psylocibin sits in many of the same neuro receptors that other headache treatments work on so it's not really surprising to those researchers that have looked at it. It is similar to serotonin which is known to be connected to headaches and headache treatments.

"Sumatriptan and the other "triptans" used to treat clusters and migraine have a similar molecular structure to psylocibin.

"The main difference with psychedelics vs available treatments is that it can work as a preventative long after it has left the body. Nothing else can do this. In many cases, much fewer doses are required to get positive results."

Katie Martin heads up the charity Brain Research UK, which is funding a new study that hopes to offer some clues about the causes of cluster headaches.

She said: "It's such a horrendous thing and there are such a lack of conventional treatments. That's why is it is known as the suicide headache because it really does drive people to that.

"If people are going to take their own lives because of the pain they will try something like that if it's going to work.

"We aren't funding any research [on psylocibin] but we are response driven. If someone applied to us for research into the effects of mushrooms we would consider it.

"The projects we are funding are looking at the causation side of it to try to understand why people get these headaches and to hopefully get insights into how to treat them."