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Past Research

Yale ~ Psilocybin

A randomized controlled study involving 14 participants explored the safety and efficacy of repeated, low-doses of psilocybin for cluster headache. In the first phase of the study, individuals were either given three 10mg/70kg doses of synthetic psilocybin five days apart, known as the “pulse regimen,” or a placebo. The results revealed a 30% reduction in headache frequency by those given psilocybin, and no change in the placebo group. 10 milligrams of synthetic psilocybin is approximately the same potency as 1 gram of dried psilocybe cubensis mushrooms.

In the extension phase of the study, 10 qualified individuals received the pulse regimen of three 10mg/70kg doses of synthetic psilocybin. After receiving the psilocybin, their average number of cluster headache attacks per week went down by almost 50%. The results indicate that initial response to a first pulse regimen of psilocybin, may not be predictive of response to a second pulse regimen. As is common with preventive or transitional headache treatments, continued or repeated treatment may be necessary to achieve maximal effect. The study was led by Dr. Emmanuelle Schindler and took place at the Veterans Affairs Hospital in West Haven, Connecticut, an affiliate of Yale University School of Medicine.

Cluster Headache Epidemiology

Clusterbusters helped to fund and publicize the large International Cluster Headache Questionnaire. More than 3,000 people participated in the survey and results were published in the journal Headache in November 2021. Key findings include that cluster headache often occurs in the pediatric population, although they are typically not diagnosed until adulthood. Men were more likely to have episodic cluster headache between the ages of 10 to 50, but the sex ratio was approximately equal for other ages. Many typical features of migraine (photophobia or phonophobia, pain aggravated by physical activity, and nausea or vomiting) are also present during cluster attacks. Unfortunately, common treatments are reported to work less effectively for people with chronic cluster headache.

The paper was authored by Larry I. Schor PhD, Stuart M. Pearson MA, Robert E. Shapiro MD, PhD, Wei Zhang PhD, Hongyu Miao PhD, and Mark J. Burish MD, PhD.

Harvard ~ Psilocybin 

In our initial research project, our Case Series completed at Harvard showed the effectiveness of treating cluster headaches with psychedelics. The results were published first in the peer-reviewed medical journal Neurology and publicized cluster headaches, the need for new treatments and the possibilities that further research into psychedelic related research could offer exciting opportunities.

Upon the determination of the importance of our work by the administration of Harvard, our study was the first psychedelic study approved there in over 40 years.

Harvard & Hannover Medical School, Germany – BOL-148

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 off-shoots into non-hallucinogenic treatments. Once science determines that something works, it opens up many new avenues for other research that can have an effect on these same areas in the brain with related molecules. Our initial work at Harvard with psilocybin pointed researchers into this new exciting area of research and the discovery of a new possible treatment path. This continued work with Harvard lead to a combined effort between researchers at Harvard and the Hannover Medical School, investigating the effectiveness of the non-hallucinogenic compound BOL-148 (Bromo-LSD) for cluster headaches. Just as the early work by Hofmann lead to such headache treatments as Sansert and Sumatriptan, our work has lead to this unique cluster headache treatment. Early results from a small clinical trial in Germany, which was funded by Clusterbusters®, are extremely promising. Confirming these results with larger clinical trials and bringing this to market and 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. The job of getting this treatment to market is now in the hands of a private company of which Clusterbusters® is working closely. With our current healthcare system in the US, this level of research can only be handled privately, and partnerships have been formed that will move the research forward for our community.

These completed stages of research can be viewed below.
The work that set the basis for the future BOL-148 research.

View the published results of the first BOL-148 Study.

Post Traumatic Stress Disorder ~ Research

During our ongoing research, it has been discovered that an alarming percentage of people with cluster headaches also suffer Post Traumatic Stress Disorder as a result of the disease. Although it is common knowledge within the medical community that chronic pain can produce PTSD, until this study by Clusterbusters there had never been any associations made with clusters and PTSD. The Post Traumatic Stress Disorder 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 by-product 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. We are currently involved in discussions with research facilities aimed at initiating clinical trials.

Medication Use Survey ~ Study

We have collected the largest database on the efficacy of cluster medications and the resulting peer-reviewed publication ended up being one of the largest studies to date involving cluster headache sufferers. Following publication, the results shed great light on the actual effectiveness of the medications we use. We discovered many of these results differing from what had long been advertised as to the efficacy of our medications. Results were tabulated and reviewed at one of the country’s leading institutions and published at a leading and well-respected medical journal. The reason this study was made possible was the size of our community and the desire for so many in our community to participate and submit data in numbers rarely seen in patient communities. We are extremely proud of the way in which our members step forward to help improve the lives of all families living with cluster headache.

Oxygen Survey and resulting study

Clusterbusters along with Dr. Larry Schor, Dr. Mark Burish, Dr. Robert Shapiro and Stuart Pearson conducted the Cluster Headache Questionnaire, an International Survey. One of the published research papers that came about from this survey were the results of: Effectiveness of Oxygen and Other Acute Treatments for Cluster Headache.

This research was recently used as evidence in our latest submissions to CMS to again ask for their reconsideration of their decision to not approve home oxygen for cluster patients.

This along with the additional oxygen research published by Clusterbusters (example below) is particularly useful and important in our continued advocacy work and educational projects. This study helps in educating more doctors to convince them to prescribe oxygen and at the proper flow rates. It is also helpful for people fighting their insurance companies in the US for coverage and helpful when ordering oxygen from medical device suppliers in getting the correct equipment.

This research is commonly linked as a valuable tool in helping cluster patients overcome the many obstacles that still remain when trying to access the best acute treatment available.

Oxygen Survey ~ Study

This is another published oxygen study by Clusterbusters, Dr. Emmanuelle Schindler, Dr. Chris Gottschalk, Dr. Doug Wright and Marsha Weil.

This was the Survey Analysis of the Use, Effectiveness, and Patient-Reported Tolerability of Inhaled Oxygen Compared With Injectable Sumatriptan for the Acute Treatment of Cluster Headache.

This important research again helps present high flow oxygen as the effective and safe acute treatment that it is and helps us battle the long list of access issues we deal with as a community.

LSA (Lysergic Acid Amide) ~ Study

Clusterbusters has completed several research studies regarding LSA (Lysergic Acid Amide) which is the psychedelic compound found in certain seeds and grasses. Dr. Andrew Sewell completed much of the research on LSA for cluster headache treatments before his untimely and unfortunate passing.

Following our discovery of LSA as an efficacious treatment for cluster headaches, and the resulting research study at Yale, a great many people worldwide have found success in treating their cluster headache cycles.

Psilocybin and LSD and Cluster Headaches ~ Study

This is additional published data on the use of psychedelics for treating cluster headaches.

You can view the poster that was presented to the American Headache Society

Response of Cluster Headache to Kudzu ~ Study-Sewell

Based upon online responses from the cluster community, Clusterbusters initiated a research study into the effectiveness of Kudzu. Yes, that common plant that grows across streets overnight.
Dr. Sewell conducted a study into its effectiveness in treating cluster attacks.
Results.—(69%) experienced decreased intensity of attacks, (56%) decreased frequency, and (31%) decreased duration, with minimal side effects.
Conclusion.—Anecdotal evidence suggests that a component in OTC products labeled as kudzu may prove useful in managing cluster headache.

Cluster Headaches & Moyamoya- Sewell ~ Study

A published study of the comorbidity of cluster headaches and Moyamoya disease.
A study by Clusterbusters, Dr. Andrew Sewell and clusterheadaches.com

Diagnostic Tool Design ~ Study

One area that Clusterbusters has focused upon with research is the issue with people getting a proper diagnosis in a reasonable amount of time. It’s not unusual at all to find someone that has been misdiagnosed for many years, even decades. This means that people can go years not getting access to the few treatments that we currently have available to us.

Clusterbusters teamed with Dr. Morris Maizels and his design team and we’ve helped to develop an online diagnostic tool that helps people and their doctors zero in on a correct diagnosis. A large number of people in our community helped fine tune the tool.

If you’re not sure about your own diagnosis or if you want to share the tool with doctors or other patients, view tool.

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