There are few times in life where you walk into a room of strangers and immediately feel like they’re your family. That’s the impression of cluster headache patients who come to the annual Clusterbusters conferences. This disease is debilitating, and the rate of suicidal attempts is 20 times the national average in this patient group. The term “Cluster Headache” does such a disservice, especially when world-renowned neurologists agree it’s one of the most painful conditions a human being can experience. The Clusterbusters 3-day meeting offers “clusterheads” the validation they’ve desperately needed.
Many times, the men, women, and children suffering from cluster headaches and the PTSD, depression, and agoraphobia that come with the attacks, have struggled in silence for years. Women and people of color seem to be particularly at risk of delayed or misdiagnosis, which means decades of needless pain for some patients. This yearly event completely changes that perspective. If you’ve felt isolated and alone because of cluster headaches, you will never have to feel that again after coming to the conference, joining the secure, online Clusterbusters forum or attending one of their regional support groups.
“I cried for two days straight during my first conference,” said Ashley Hattle-Cleminshaw, episodic patient and author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. “As soon as I walked into the Thursday night welcome registration, I felt understood for the first time in seven years. I didn’t have to explain to anyone that these aren’t just headaches because every single person in that room had either felt the same pain I had or seen someone go through an attack. I stopped being a sufferer that day and started fighting back.”
The 2018 patient conference was held in Denver, Colorado back in September the 13-16 and a variety of speakers addressed the crowd of more than 200 people. Clusterbusters has already announced the location and dates of the 2019 cluster headache conference: Dallas, Texas September 19-22. Patients, their family and friends, and medical professionals have already started registering for the popular meeting, which can be found on the registration page at Clusterbusters.org. The nonprofit organization was founded in 2001 by Bob Wold, a chronic cluster headache patient, who has dedicated more than 20 years of his life to furthering education, awareness, research, and advocacy for this form of Trigeminal Autonomic Cephalalgia.
What You Can Expect to Find at a Clusterbusters Conference
Vice President of the nonprofit, Eileen Brewer, President Bob Wold, and many others work year-round to make the Clusterbusters conference a successful event. The nonprofit not only hosts the meeting but provides scholarships to patients who struggle to afford the travel expenses and registration fee. Patients with episodic or chronic cluster headaches often pay out of pocket for oxygen therapy, despite it being the number one treatment for the disorder. Additionally, there are no medications made specifically to treat cluster headaches, which means off-label prescriptions may not be covered by insurance either. Clusterbusters helps several patients attend each year.
Some of the speakers and event details you can expect to see include:
- Brian McGeeney: Dr. McGeeney is a neurologist at Boston Medical Center who holds a special place in the hearts of clusterheads. He attended his first Clusterbusters conference “under the radar,” meaning he told no one of his credentials and quietly gleaned information from the patients and speakers on how medical professionals treat the condition and their patients. He’s since become an annual speaker and is considered to be one of the leading experts in Cluster Headaches in the United States by patients.
- Bob Wold: Listening to Wold speak is eye-opening, to say the least. He’s tried over 70 medications and treatments in the four decades he’s had cluster headaches. He’s one of few patients who has switched from episodic to chronic and back to episodic again. His inspiring words make any skeptic realize that “suicide or psychedelics” is a mantra for cluster headaches for a good reason. Psychedelic compounds, specifically psilocybin mushrooms and LSD, share molecular structures with common migraine medications used to treat clusters such as sumatriptan and DHE. “Busting” with these substances has aborted attacks, prevented or ended episodic cycles, and dramatically decreased pain intensity.
- Dr. Larry Schor: As psychotherapist at the University of West Georgia, Dr. Larry Schor has a unique perspective to offer on living with cluster headaches. Dr. Schor is an episodic patient whose kind, caring voice and personal story resonates with every clusterhead in the audience.
- Joanna Kempner: Kempner is a professor at Rutgers University and the author of Not Tonight, an eye-opening look into the history of migraines and the treatment of women who have them. She’s currently working on her second book about Clusterbusters and the rise of psychedelics as a treatment for “Suicide Headaches.”
- A Patient’s Perspective: Andrew Cleminshaw was the patient speaker at the 2018 conference, and there were few dry eyes at the end of it when he was given a standing ovation. As a pediatric patient who developed intractable chronic cluster headaches at age 12, his perspective was heart-breaking but also inspiring. Each year, Clusterbusters asks a new patient to present their story.
- A Supporter’s Perspective: Ginny Hall was the supporter speaker this year, and it’s always refreshing to hear the friend or family member’s side of it. Hall has supported her husband, Patrick, who has chronic cluster headaches, for nearly all of their marriage. During her speech, she held up a 6-8-inch-tall binder filled with all of the information, medications, and treatments she and her husband have found over the years. Clusterbusters asks a new supporter to share their story each year as well. After all, many patients wouldn’t be here without a good support system at home.
- News About Emerging Treatments for Cluster Headaches: Bob Wold and affiliates announce new treatments and options for cluster headaches at the annual September conference. The big news at the 2018 meeting was about BOL-148, a synthetic tryptamine that takes the psychoactive aspect (or the “trip”) out of psychedelics, allowing patients to achieve pain relief without breaking the law and setting aside 6-8 hours for magic mushrooms or 12-24 hours for LSD. Clusterbusters was an essential part of the medication’s study in Germany and attendees were elated to find out research and trials have started again. Drs. Emmanuelle Schindler and Chris Gottschalk of Yale University gave updates on the psilocybin study for episodic and chronic cluster headache patients. They’re still actively accepting patients.
- An Oxygen Demo: Clusterbusters and their sponsors provide an oxygen demo along with a recovery room filled with oxygen tanks, energy drinks, ice packs, and more, so anyone who has an attack has somewhere to go to treat it.
- Auction and Raffle: It’s exciting to see the new artwork and items on auction and for the raffle every year. The cluster headache patient group is a creative one. Many use art to cope with the attacks. The auctions and raffles raise funding for Clusterbusters.
If you have cluster headaches, you don’t have to do this alone. There are online forums, Facebook support groups, regional groups, awareness events (#CureforCluster 5k), and the Clusterbusters website available to help you understand more about your condition and get support from those who really do “get it.”