Using an unconventional approach to treat his cluster headaches.
It feels like someone drilling through my temple, and scraping around my skull and the back of my eye for an hour. I explain the pain level this way: If a regular headache is like a paper cut on your finger, then cluster headaches are like amputating your arm at the elbow with a rusty saw and no anesthesia.
This is how Tyler Mann describes his experience with cluster headache, an extremely rare headache disorder. His vivid description rips apart the notion of “just another headache.”
Cluster headache is commonly believed to be the worst pain a human can experience. This disease affects approximately one out of 1,000 Americans, the majority of whom are male.
Very little is known about cluster headache. Only a small handful of clinical studies have been conducted to understand this puzzling, complicated disease. Standard migraine medications hardly touch the pain endured during an attack. Oxygen and medications called triptans can help, but there are significant problems with both options. Triptans, which Tyler uses, can cause medication overuse headache (MOH) if used too often. Oxygen can provide some relief when used at the onset of an attack, however the majority of insurance companies won’t cover oxygen.
Turning the Camera on Himself
Tyler has an impressive résumé. He has worked as a producer and videographer for popular TV shows on networks including A&E, TLC, CNN, National Geographic, and The History Channel. Because Tyler is an independent contractor, he can choose projects and make his own schedule. For years, this allowed him to decline work during the three months out of the year when the cluster attacks appeared like clockwork.
In 2014, Tyler decided to turn the camera on himself to expose the agony, pain, and desperation he endures during cluster attacks. This was just the beginning of what Tyler refers to as his “passion project.” That year he reached out to others with cluster headache and began to follow their daily lives. This work in progress is called “Clusterheads,” a documentary he hopes will bring attention to the need for research and new treatment options.
“Clusterheads” is being funded through donations, mostly from fellow patients. Since its inception, filming has been a challenge because Tyler has to balance his own work schedule with that of the participants’ cluster attacks. Filming the darkest days of a patient’s life will give the audience a glimpse of what these attacks can do to a person. Tyler says that the story will create itself over time. For now, Tyler provides updates and has a trailer for the documentary on his website at clusterheads.com.
Cluster Headache Can Kill
Cluster headache has a very serious nickname: suicide headache. Tyler talks openly about his own struggle with ideations of suicide during cluster attacks. In a recent interview with Vice, Tyler says he considered hanging himself many times as he lay on the bathroom floor screaming in pain—and doesn’t trust himself to own a gun.
The gravity of this issue is monumental. Statistics are not kept on how many people with cluster headache commit suicide out of pure desperation and a lack of options to manage or cure the disease. However, anyone involved in social media groups for cluster headache will tell you that reports of suicide in the community are, sadly, all too frequent. Tyler urges people to talk about this issue. “Sometimes stigma can be self-inflicted,” he says.
An Unconventional Breakthrough
After eight years of living with cluster headache, Tyler says he hit rock bottom. He felt completely alone from the isolation this disease brings. In desperation, he went online and found Clusterbusters (clusterbusters.org), a non-profit organization offering information, support, and a community that understood him. “They are family,” he says of the people he has met either virtually or in person.
One purpose of the organization is to educate and inform patients about an unconventional treatment: psilocybin. This compound is found in substances including magic mushrooms, lysergic acid diethylamide (LSD), and N,N-dimethyltryptamine (DMT).
Possessing and ingesting any of these drugs is illegal in the United States (and not recommended by the U.S. Pain Foundation or the INvisible Project). However, Tyler says these drugs helped him regain his life. “Mushrooms = no pain,” says Tyler.
It is believed that psilocybin activates serotonin receptors in the brain, providing relief and even preventing future cluster attacks. Taking a therapeutic dose causes hallucinations, which Tyler says he experiences when taking the substance. “Without it, I wouldn’t be here,” he says. Psilocybin has reduced his cluster headaches dramatically; recently, Tyler had a cluster attack for the first time in almost two years.
To maintain the long-lasting effects of psilocybin, Tyler practices microdosing, meaning he consumes a small amount on a daily basis. Tyler believes microdosing is the reason he went two years between cluster attacks.
Hope for the Future
One small study on the efficacy of psilocybin on cluster headache was performed in 2006. Fifty-three cluster headache patients were interviewed about their use of either mushrooms or LSD to abort attacks. Fifty-seven percent reported that use of either drug caused cluster period termination. Eighty-four percent experienced an extension of their remission period.
Currently, a more extensive study is recruiting patients at Yale University and its affiliated Veterans Affairs hospital: VA Connecticut Healthcare System – West Haven.
This new study offers renewed hope for creating legal drugs aimed at preventing or aborting cluster headache. It’s the first step in a long process, but one that could validate the efficacy of psilocybin that people like Tyler rely on. Tyler encourages those with cluster headache to get out of their comfort zone. “Do what you have to do to survive,” he says. He believes no one should suffer in pain when other options are available.
Through his pain, Tyler says he has learned he is stronger than he realized. “Cluster headaches absolutely make you feel like giving up, committing suicide just to stop the pain,” he explains. “I was strong enough not to do that in the first eight years, and I’m proud of that.” He hopes that through Clusterheads, he can educate others about the unfathomable effects of this disease and demonstrate the need for more research.
- Clusterheads documentary: clusterdocumentary.com
- Research on psilocybin in chronic cluster headache: clinicaltrials.gov/ct2/show/NCT02981173
- Clusterbusters: clusterbusters.org
The U.S. Pain Foundation and the INvisible Project do not recommend using illegal substances to treat cluster headache or any other chronic pain condition. Your doctor should be informed of any decisions that vary from your treatment plan.
Suicide Hotlines and Help