The Clusterbusters conferences are unmatched by any other medical gathering of patients. These annual events bring hundreds of cluster headache patients together, which is a life-changing experience for many, including myself. (The 2018 conference for cluster headache patients by Clusterbusters is in Denver, Colorado, September 13th-16th. Learn more and sign up here.) Bob Wold, the founder of the nonprofit organization, has dedicated more than 15 years of his life to furthering research and raising awareness for this misunderstood disorder.
Clusterbusters spearheaded the research at Harvard and Yale with psilocybin and psychedelics. They’ve also contributed to the decreasing number of years it takes to reach a proper diagnosis. Ten or more years ago, it took up to eight years or longer for a doctor or neurologist to correctly diagnose a clusterhead, causing them to go years without high-flow oxygen and other essential treatments. Thanks to Clusterbusters and other head pain advocacy groups, the average time to diagnosis is closer to two years now.
My first Clusterbusters conference was in 2014. I went to Nashville (the conference locations change each year. Denver is the 2018 location.) with a camera, a voice recorder and pen and paper prepared to hunker down and do more than a dozen interviews and soak in as much knowledge as I could. I found all of that and more. I walked into the welcome reception and found an overwhelming sense of love and understanding. Many of these people took me in immediately and shared more wisdom with me than eight months of research had taught me. My cluster headache book became more than an outlet of information for new patients. I needed to tell their stories. The trials that patients and their supporters face every day is more difficult than you can understand.
The 12th Annual Clusterbusters Conference took place two weeks ago in Chicago from September 14-16. There were more than 200 attendees registered, which is more than any other year. Ainslie Course was a fantastic moderator, and Eileen Brewer planned a flawless event as usual. Dr. Brian McGeeney, our favorite neurologist, from the Boston Medical Center speaks at the event every year. Dr. McGeeney and Dr. Larry Schor‘s speeches are the most important ones to sit in on for newcomers and returning attendees.
Erika McDermott also gave a stunning speech about her personal experience that left not a dry eye in the conference room. Other speakers included Dr. Emmanuelle Schindler from Yale University, Hans-Joerg Tangermann of Germany, and many others. gammaCore® talked about their vagus nerve stimulator which has shown great promise in treating acute attacks, and Katie Golden, Dr. Robert Shapiro and I were on the Advocacy Panel to discuss how we can continue to raise awareness and funding for cluster headaches and other types of head pain.
The Clusterbuster event reminds us all that we’re not alone and several thousand online viewers were able to see snippets of speeches. This year’s conference was particularly exhilarating for me because my book, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, debuted the week prior. Wold and Brewer were kind enough to give me a table to do book signings, and I sold out on the first day of the conference. I was honored to receive the award for “Exceptional Education in Cluster Headache” from the organization.
The most meaningful moment for me, however, was handing Wold a copy of my book. His experience and expertise along with many others made my book possible, and I’m truly amazed at the response to the book. I set out to help the newly diagnosed. I set out to write the book I needed when I was diagnosed. I ended up with a thorough guide to cluster headaches that can help new and old patients and also family, friends, and physicians of patients.
I can’t praise this organization or event enough. I highly recommend attending one if you can. It doesn’t matter if you have clusters or if you know a friend of a friend who has clusters, this yearly gathering will forever change your perspective on living with one of the most insidious pains a human being can experience.