02.05.14 10:45 AM ET
Longtime Sufferers of Cluster Headaches Find Relief in Psychedelics
About a year ago, I attended a conference at a Boston-area university. I joined the ranks of experts and students playing session-hooky in the hallways. The conversation turned to MDMA, and its use in treating veterans with post-traumatic stress disorder. A doctor turned to me and whispered, “You think that’s something? You should see what psychedelic mushrooms are doing for patients with cluster headaches!”
Intrigued, I asked, “What?!”
The doctor gushed that they were seeing remission, and that patient groups across the country were helping each other heal with the ‘shrooms. When I asked for more details, and if he would go on record, he politely clammed up and walked away. I suppose that was for the best—I couldn’t find a media outlet at that time to take the story anyway.
Oh, what a difference a year makes. As medical marijuana gains traction across the nation, the cannabis plant’s therapeutic value is seldom questioned, except perhaps by those whose job it is to support marijuana prohibition.
And with the mainstream recognition that this plant might have more healing power than the Federal government cares to acknowledge, other, traditionally more frightening illicit drugs like psychedelics, are being noted for their therapeutic value, too.
Psilocybin—aka “magic”—mushrooms and LSD are Schedule I drugs, the same Federal class marijuana sits in having no recognized medicinal value and a high potential for abuse, are being turned to for relief of cluster headaches.
Cluster headaches are excruciating for those who suffer from them.
More than one person in the course of research for this story likened the headaches to “an icepick piercing your brain through your eyes.” The headaches come in cycles, sometime multiple times a day, and an attack can last for up to 90 minutes. It’s debilitating to the point where cluster headache patients cannot function normally in society—how do you tell your boss you need to take an hour off while you suffer through excruciating pain? Modern medications—from opiates to steroids to neuro-implants—are, at best, minimally effective. There is no known cure. The suicide rate for those with the disease is 20 times the national average (PDF), according to a report published by the Multidisciplinary Association for Psychedelic Studies (MAPS), a 501(c)(3) non-profit research and educational organization dedicated to expanding the usages of psychedelics and marijuana.
There are an estimated 1 out of every 1000 Americans, 350,000-400,000 people, who suffer with the disease.
Bob Wold, 61, started getting the killer headaches 35 years ago. He tried over 70 different medications, and none of them worked. There is only one FDA-approved medication for cluster headaches. Other than that, all other treatments are off-label.
According to Wold, the National Institutes of Health has spent less than $2 million on studying cluster headaches in 25 years.
And so, Wold was “always on the look out for something better.”
Combing the Internet and message boards, he started doing research, and found people talking about psychedelics. “A guy in Scotland had used some LSD recreationally and his cluster headaches didn’t happen that year. [The headaches] start the same time of year, every year,” he explains, so if your cycle starts in the spring, that’s when they’ll usually start to come on.
“This guy’s cycle didn’t start that fall, and he attributed it to LSD,” Wold says. “When [Albert] Hoffman was researching LSD, he was looking for a drug for headaches and migraines.”
“Other people tried it, and had amazing results,” Wold continues. “It gave long-lasting results after just a couple of doses. You could avoid the [headache] cycle from just 2-3 doses, 5 days apart at the start of cycle—and that stops it. It works. We’re trying to figure out why that is.”
And when he says “doses”—it’s not what you might think. These sufferers do not want to trip. They want relief. Just a quarter of what would be considered a recreational dose is effective for stopping their headaches.
Wold says that while low-doses of LSD are effective, (“People liken it to the buzz of drinking three beers,” he says.) it’s difficult to get. “But mushrooms are effective, and you can grow your own. For a $50-$100 investment, [patients] can grow several years worth of medication.”
And that’s what many cluster headache patients are doing now—growing their own mushrooms for medicine.
Wold founded ClusterBusters, a 501(c)3 non-profit organization involved in research, education, and advocacy for cluster headache patients, in 2002 to get formal research going. He even took his anecdotal research to Harvard.
Dr. John Halpern, MD, is Assistant Professor of Psychiatry at Harvard Medical School, Director of the Laboratory for Integrative Psychiatry, Psychiatrist-in-Charge of Division Coverage—Division of Alcohol and Drug Abuse. In other words, he’s a Harvard expert. “People from ClusterBusters came to me,” says Halpern. “There was nothing published on psilocybin and LSD for cluster headaches. I thought it would be important to get something into the literature.”
So Halpern started doing research. “[Cluster headaches] is one of the most painful conditions we know of in medicine,” Halpern says. “Proposing a hallucinogen as a solution is a real arduous process to get authorized.” So Halpern suggested looking at a non-hallucinogenic 2-Bromo-LSD, instead of LSD. It’s similar in chemical structure to LSD, except for a huge bromine atom that prevents receptors in the brain from picking up the hallucinogenic properties of the drug.
Halpern went to Germany, where there is a compassionate use provision that allows a doctor to take on the risks of administering a non-approved drug if there is a compelling need. There they tried non-hallucinogenic 2-Bromo-LSD for chronic cluster headaches.
“One patient had cluster headaches for 27 years. He had debilitating 3-month long cycles, and wasn’t responding to meds. He was devastated. He was getting 40 cluster headaches a week.” After his treatment, he had zero headaches for 17 months.
“This drug appears to shut cluster headaches down and puts patients into remission,” says Halpern. “It’s astounding.”
“[People] are suffering and they don’t need to be,” says Wold. “There are things that can help them. A lot of people won’t touch anything that isn’t FDA approved. Most people who try psychedelics for clusters are trying psychedelics for the first time. It’s a big step for them. People need to do their own research and find out how safe psychedelics are, especially in a clinical setting. I’ve lost a lot of friends over the years—some have refused to try the psychedelics. I understand. It’s fear about what might happen.
“The reason so many people are involved in pushing for the research, it’s for the people who want FDA approved medication, and not have to worry about losing their job or their family,” Wold continues.
Yet, that’s proving to be more difficult than one suffering from the disease might hope.
For one thing, there’s about twice as many people with the disease in the USA than the required maximum to achieve “orphan drug” status—a position that would grant a good deal of government support, protection, and potential financial return.
The other issue?
While everyone interviewed for this article stressed they didn’t want to sound cynical, the same comment kept coming up: profit before people.
In other words, should a pharmaceutical company or investment firm sink the hundreds of millions of dollars into research and the process to get, for example, non-psychedelic 2-Bromo-LSD approved by the FDA as a legitimate prescription drug, they would want a guarantee that they’d have a significant return on that money. To sell three pills a year to less than half a million people… you don’t have to be a mathematician to see that the financial return on that would not exist.
In other words, “psychedelics work so well, you take fewer doses,” says Halpern. “That’s a problem. They work too well to attract the research.”
“I’m stunned and afraid 2-Bromo-LSD might not ever get developed because of a drug development system that wouldn’t support a drug like this. And let’s face it: it’s an unusual way. Just three pills stop the attacks for months—even years,” says Halpern, sounding frustrated.
“I know that there’s lots of people using psilocybin and LSD. But if we got Bromo to market, they wouldn’t have to do that.”
“These are people who aren’t from a background of illicit drug use, and it’s awkward for them,” Halpern continues. “They have an extensive community of support amongst themselves. Some have elected to grow their own mushrooms. Many have tremendous hesitation in breaking the law and engaging in something that hasn’t been approved by the FDA.”
“We stress with everyone that they should discuss this with their doctor,” says Wold. “Most patients go for months from drug to drug trying to find something.”
If patients are using mushrooms and LSD underground, says Halpern, it’s because “the system has failed” to develop a non-psychedelic option, like 2-Bromo-LSD. “It’s as close to a functional cure as possible.”
According to Halpern and Wold, there are investors interested in the development of the drug—but only if it gets orphan drug status.
“We have to get in a lab and do this research and find out why it’s working,” said Halpern.
Brian E. McGeeney, MD, MPH, is a neurologist and Assistant Professor of Neurology at Boston University School of Medicine. He walks the delicate line of treating patients who suffer from cluster headaches. “I’m not promoting [psychedelics] to patients,” he stresses. “I am open to discussing it with patients. But it’s their decision to use it or not.”
But, what makes him a sought-after doctor in the community? “I don’t freak out like a lot of other folks” when the topic of psychedelics comes up, remembering that, “We have First Amendment protection.”
McGeeney says that cluster headaches are a “disorder that destroys people emotionally. The use of hallucinogens gives them a break, which they wouldn’t otherwise get. Many feel ignored or let down by the medical community. Physicians lose interest in them as treatments don’t work. The use of [psychedelics] is a last resort.”
“Sometimes our standard medical treatments don’t work,” he continues. “And there’s a lot of bitterness among patients for lack of help from regular health care professionals.”
“As physicians, we don’t want to be accused of wrong-doing, promoting illegal activity,” McGeeney says. “Physicians get scared about what the drug interactions might be. And then physicians might be conflicted about what to put down in the medical records, because if they put down what is happening, will that be used against them at some point in time? We want to walk a fine line between not pushing that [therapy] on anybody, but be understanding and helpful and act as a resource for patients who are pursing [that type of solution].”
“It’s such a pity that we don’t have good evidence behind this, because of its scheduled nature,” McGeeney says.
McGeeney also sees potential treatment for migraines, “to a variable extent… It hasn’t been looked at all. If it works for cluster, what about the common headache?”
Halpern echoes the potential too, “This drug [2-Bromo-LSD] could be a blockbuster, just for cluster headache, but what if it turns out it’s good for migraines too?”
“We’ve come a long way,” says Wold. “When I first started ClusterBusters, I couldn’t even get doctors to return an email if it included ‘psilocybin’ in the email. I don’t have that problem anymore. We’re accepted as members of the biggest headache societies and medical groups. They’re coming to our conferences and making presentations and they’re interested in what we’re doing.”
“When I see people committing suicide because they don’t have anything to treat their headaches, it’s amazing to me that anyone would keep an option from someone at that point,” says Wold.
And while the plea for research thumps louder in the cluster headache community, Halpern, (whose company, Entheogen Corp, holds the patent on the non-psychedelic 2-Bromo-LSD) is left with one observation.
“In the absence of fact, fear can reign.”