Nicknamed “suicide headaches,” experts acknowledge cluster headaches to be the most painful condition known to medical science. With the suicide rate among sufferers in excess of 20 times the national average, and very limited medical options to treat the disorder, patients desperately seek alternative treatments to find relief from their life of pain.
In 2002, a group of determined cluster headache advocates armed with anecdotal evidence supporting the use of psychedelics to treat clusters sought the support of MAPS. This initial meeting signaled the beginning of a sea change in research and treatment plans as well as quality of life for thousands of cluster headache patients. Through generous and unwavering support from MAPS, the non-profit Clusterbusters was formed and began the task of fact-based legitimization of the positive effects of psychedelics on cluster headaches.
The publicity that continues to be generated through medical journals, documentaries, and major news outlets has educated thousands of patients, enabling them to make fact-based decisions on the use of psychedelics as a treatment option. Psilocybin and LSD are proven effective for treating cluster headaches. In many cases these treatment methods end a cluster headache cycle and prevent a cluster headache cycle from returning. Despite evidence of medical use, current U.S. laws classify psilocybin and LSD under Schedule I of the Controlled Substances Act. This classification slows clinical research, stifles funding, discourages the dissemination of facts, and leads to a distorted view of psychedelics. Most importantly, lack of drug policy reform is needlessly costing the lives of cluster headache sufferers as many with the disease give up hope of obtaining an effective medical treatment. Patients should not be forced to make the choice between taking an illegal substance and taking their own lives. Although Clusterbusters has made strides in education and advocacy, a recent discussion on a social media site illustrates the difficult road we still have ahead. When a fellow cluster headache patient mentioned the use of psychedelics as an effective treatment, one response was as follows: “All of this stuff about psychedelics is BS. If they really worked, the government would have made them legally available to us long ago.”
During our research, it has been discovered that an alarming percentage of people with cluster headaches also suffer post-traumatic stress disorder (PTSD) as a result of the disease. Although it is common knowledge within the medical community that chronic pain can produce PTSD, until this recent study there had never been any associations made with clusters and PTSD. The PTSD Checklist for Civilians (PCL-C) is the commonly used test for diagnosing PTSD. The Civilian version measures the results of repeated trauma rather than singular events that can cause PTSD. Following treatment of cluster headache with psychedelics, PCL-C scores were reduced a staggering 48.4%. This is not just a byproduct of relieving the pain, as the scores of those people relieving the pain of clusters with prescription medications or surgeries did not fare as well with improved scores. This dramatic quality of life improvement is seemingly only produced with treatment of the cluster headaches with psychedelics and is accomplished completely through self-therapeutic measures. Our research on this topic continues.
Clusterbusters feels strongly about the need for psychedelic research for the relief it can provide for both mental and physical ailments, but also because it leads to offshoots into non-hallucinogenic treatments. Just as the early work by Hofmann lead to such headache treatments as Sansert and Sumatriptan, our work has led to another possible cluster headache treatment in the non-hallucinogenic compound BOL-148 (Bromo-LSD). Early results from a small clinical trial in Germany are extremely promising. Confirming these results with larger clinical trials and bringing this to market so it is available to everyone will be a time-consuming and expensive process; a process that has begun 40 years too late due to the legal status of LSD. (Following the publication of the promising results in Germany, many people have tried to procure BOL-148 through various sources. There are reports of a couple of people getting a prescription for it from their doctors in Europe, procuring the BOL-148 at great expense, and having similar successful results. Others have tried to obtain BOL-148 through various routes and have for the most part failed. Most labs will not make it due to the issues surrounding analogues of Schedule I drugs.)
Our volunteer advocates are driven to educate the community and demand improvement in proper diagnoses and effective medical treatment. The cause of cluster headaches is unknown and there is no cure, yet Congress has never held hearings on this condition, which debilitates approximately 400,000 Americans. In 2012, we began collaborating with the Alliance for Headache Disorder Advocacy by joining them in Washington, DC, to urge Congressional hearings on the $31-billion-dollar impact headache disorders have on the U.S. economy every year. We are returning again this year to continue stating our case. The National Institute of Health, which spends billions of dollars on research and developing medications for diseases and conditions, many affecting far fewer people in much less damaging ways, has never invested one dollar on cluster headaches. Never has a medication been brought to the market specifically for cluster headaches. We are currently working with other organizations and the FDA to get patients involved in the approval process of prescription medications. Additionally, Clusterbusters has reached out to the Substance Abuse and Mental Health Services Administration (SAMHSA)—the federal agency charged with suicide prevention in the USA—to develop training guidelines for all people working the phones on National Suicide Hotlines.
It is encouraging to see the positive results cluster headache patients have achieved due to treatment with psychedelics. Through our advocacy efforts, research, and patient testimony these alternative treatments are gradually being recognized and accepted among medical professionals. Clusterbusters has been accepted into major medical associations and is being sought out by the medical community as an educational resource to better assist patients. Although Clusterbusters missions have not changed or been mitigated to fit acceptable practices, neurologists and researchers now attend and present during our annual conferences. Much of the above progress can be traced back to the belief shown by Rick Doblin of MAPS in what we are doing and his early support.
Bob Wold, as a businessman and 30-year-long cluster headache sufferer, formed Clusterbusters in 2002 to facilitate research on psychedelic treatments for cluster headaches. This followed a profound success story treating his own condition. Since that time, Clusterbusters has funded research, expanded on advocacy programs, and built education programs for headache sufferers, the medical profession, and government agencies.