Embracing unorthodox methods brings relief—and advocacy.
By most standards, Ashley Hattle, 28, and Andrew Cleminshaw, 26, are not treating their cluster headaches with conventional methods. While they’ve each tried many treatment modalities, the method that helps them most is “busting”: dosing with tiny amounts of psilocybin, LSD, or other psychedelic drugs. Pursuing this method of treatment can be challenging, but for this engaged couple, it’s saved their lives—and brought them together.
What are cluster headaches?
Clusters are one of several forms of trigeminal autonomic cephalalgia, closer to epilepsy than migraine disease.
Cluster headaches are generally believed to be the most painful form of head pain, and cause people to experience some of the worst pain ever measured by modern science. They are poorly understood, but researchers believe that malfunctions in the hypothalamus—a small organ deep inside the brain—cause arterial swelling, creating pressure on the trigeminal nerves, which cover the face.
“Attacks” of pain are often predictable and come in regular cycles, called “clusters.” Some people are episodic, like Ashley, who experiences the pain in six-month cycles (during her cycles, the pain lasts for one to three months, with two to four attacks each day). Some people are chronic, like Andrew, who typically experiences five to seven attacks each day, lasting 30 to 90 minutes each.
The pain of a cluster is more intense than childbirth, kidney stones, and gunshot wounds. Most people with clusters prefer they not be referred to as headaches, because they feel that term is not strong enough for the crippling pain they experience. They are sometimes referred to as “suicide headaches.”
Andrew’s: Suicide or psychedelics
Andrew was 12 when he was diagnosed, and a few years later, his mom found Clusterbusters, a national organization devoted to teaching people how to safely secure treatment and change their lives for the better. Andrew was still a teenager when he started going to conferences, where he began to learn how to “bust.”
At first, he was apprehensive: “My mother raised me not to do drugs, that they’re bad—it’s hard to fight that stigma,” says Andrew. But he is “treatment refractory,” meaning no other treatments had helped him, and his mom was in favor of trying busting. So at the age of 17, Andrew decided to stop the conventional medications that weren’t helping. After five days of detoxing, he tried a small dose of psilocybin (dried, ground mushrooms in capsule form). He went a full day without an attack, something he hadn’t experienced for many years—and he knew he was on to something.
Andrew is quick to point out that his experience is not entirely typical; he says that each individual will have a slightly different experience.
“The goal is never to trip; the goal is to take as little as possible and have success,” explains Andrew. Dosing with psilocybin is at less-than-recreational levels. Access to these medications is illegal, which makes things tricky. (Some people are able to grow mushrooms. From about $50 of raw materials, it’s possible to grow three years’ worth of medication, compared to the thousands of dollars annually that most people spend on other medications.)
Andrew also uses LSD to bust, at doses that are closer to a recreational dose. By carefully alternating psilocybin and LSD on a schedule, he has been able to reduce his pain significantly. “This medicine opened my mind to questioning what I’ve been told my entire life, especially about medicine,” he says. “On conventional medications, I was taking close to 40 pills a day, and almost all of those were to counteract side effects of five of them. Instead, I can take this medicine—which I treat respectfully—and get so much more relief.”
Andrew says these medications have saved his life. “There is no question about it: I would have killed myself, period. There was no way I was going to look forward to a lifetime of that kind of pain.”
Ashley: Going a different route
Like Andrew, Ashley got into busting out of desperation, she says:
“I was doing two injections (of conventional migraine medications) a day for 60-day bursts, and taking triptan pills on top of that, to treat my cycles. When the cycle would end, I would go through withdrawal; I lost a third of my hair and my hands got really shaky, which are some of the side effects I still deal with today.”
She was 17, in college, and knew she could get her hands on some LSD. Her family was concerned, but also believed Ashley would be as responsible as possible. After trying one dose of LSD, she skipped her next pain cycle altogether—which meant months of relief.
“This medication is not technically legal, but I don’t want someone to go through that much pain,” says Ashley. “There should be no unnecessary pain when this can help some people.”
Making a life together
Andrew and Ashley met a few years ago at a Clusterbusters event, and within a few months, they had fallen in love. Ashley’s employer gave her permission to work from home, so she moved to Michigan to live with Andrew, and they’re engaged.
Andrew had to grow up fast. “I had dreams of being an actor, but with this, you don’t work on anyone else’s timeline,” says Andrew. He missed so much high school that he had to get a GED; without a college degree, he knew he had to find a solid job where he could excel and make a name for himself. “I’ve always had to be better at what I’m doing than the next guy,” he says. For years, he’s been working in a job in the business sector, and loves what he does.
Ashley is a writer, and after a few years of attending Clusterbusters events, she published a book: Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, available at Amazon.com and AshleyHattle.com. She’s on the board of Clusterbusters and runs their annual 5k—one of the major fundraisers for the organization. She is now a full-time freelance writer, with plans to publish more books.
“There’s a real sense of empowerment that comes from taking the reins back,” she says. “The majority of people who bust have taught their doctors how to treat their disease, especially the children. Doctors receive something like 90 minutes of headache education in med school, with about 10 minutes of that on clusters—that’s just wrong.”
Ashley and Andrew have to deal not only with stigma, but with the lingering knowledge that what they’re doing is technically not legal. Ashley was mentored in her younger years by her town’s chief of police, and they’re still friends: “He said no judge is going to put you away for something that’s so well-known for busting headaches,” she explains. But Andrew says he sometimes worries that a renegade cop will try to make an example out of someone who’s busting. It’s a concern they both live with, but the relief they get—and the lives they’re able to lead—are worth it.
Some people might think being in a relationship with another person who gets clusters would be tough, but Ashley and Andrew say it works. “It is nice that we both understand it,” says Ashley. “The rule is, if you’re hurting, tell me.” In practice, both can see the pain on each others’ faces, and are able to be compassionate and understanding.
“There’s so much that can go unspoken, that feels natural,” says Andrew. In past relationships, women told him he was a bad person because he used busting for relief. With Ashley, he can fully be himself. And together, they’re committed to advocating for making busting legal—and available—for anyone who lives with clusters.