Clusterbusters® Inc is an IRS-approved 501 (c) (3) non-profit research and educational organization dedicated to finding effective treatment of Cluster Headache worldwide. Our Purpose is stated in the Bylaws of Incorporation and Mission Statement supports efforts involving the Research, Education, Support and Advocacy related to cluster headache. This corporation has been organized to operate exclusively for charitable and educational purposes, including, but not limited to the following:
- To help its’ members find solutions to problems that exist as a result of cluster headaches.
- To educate its members about cluster headaches.
- To inform its members about research involving cluster headaches.
- To provide its members with resource materials to read and view involving cluster headaches.
- To encourage, participate in and fund research into the causes of cluster headaches.
- To encourage, participate in and fund research into treatments for alleviating the pain and various symptoms of cluster headaches.
- To encourage, participate in and fund research into finding a cure for cluster headaches.
Our Case Series, research study, 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.
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. Our 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 so it’s 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 not affiliated.
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 recent study 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
We have collected data on the efficacy of cluster medications and the resulting peer-reviewed publication will end up being one of the largest studies to date involving cluster headache sufferers. Once published, the results will shed great light on the actual effectiveness of the medications we use. We suspect many of these results will differ from what has long been advertised. Results are being tabulated and reviewed at one of the country’s leading institutions and will soon be published.
Our goals in education are to not only educate sufferers about their condition and how best to deal with the condition, but also the general population, medical profession and government agencies. We hope these programs will help improve diagnostic times, help people with treatment options, and help with not only the physical aspects but the psychological effects that harm the quality of life for both sufferer and supporters.
Cluster headache is a condition that has for years often caused people to withdraw and for many reasons, try to hide their condition. This has caused the disease to be often overlooked or thought of as more rare than it’s numbers actually indicate. Numbers in the United States actually place it about twice as common as diseases that qualify for orphan drug status. This makes it more difficult to speed up the approval of new medications. The prevalence of cluster headache is approximately equal to that of Multiple Sclerosis.
Educating the medical profession and government agencies to better understand the physical, psychological and economic impact upon sufferers and their families is an important mission for Clusterbusters®.
Each year Clusterbusters® holds a national conference, bringing together sufferers, their families and members of the medical profession. The event includes presentations from Clusterbusters® on what we have accomplished the preceding year and our plans for future programs. Updates on research and our education and advocacy projects.
We offer presentations by the leading cluster headache doctors on both medical and psychological issues as well as from those directly involved with groundbreaking research, family members and advocacy experts. Our curriculum educates sufferers and their supporters on the latest advances and how they can help us advance the available treatments and life with clusters. Practical demonstrations include those on proper oxygen usage and the latest in mask designs. Also presentations by family members and supporters. These conferences are often as important to those supporters meeting others as it is for the sufferers themselves.
As importantly, educating the medical profession on the needs of those living with clusters. Teaching those that we rely upon to help us with our condition both physically as well as psychologically, understand our needs.
One of the most important and lasting things that people report taking away from these events is meeting other cluster headache sufferers and their family members. Being in a room filled with people that really do understand their condition is life altering. For information on the next conference visit our Events Page
Advocating for cluster headache sufferers includes many directions as there are many areas that need improvement. Following are a few of the past and/or current areas we have been involved in working for all sufferers.
Headache on the Hill is an annual event organized by the Alliance for Headache Disorders Advocacy during which healthcare professionals, scientists, and patient advocates urge congressional representatives to increase NIH (National Institute of Health) funding for research on headache disorders. In 2012, Clusterbusters® joined efforts with the AHDA to bring specific awareness to the lack of cluster headache research and the dire need for effective medical treatment.
Out of a total of 62 participants (including 25 M.D.s), Clusterbusters® was pleased to have a contingent of 12 cluster headache sufferers and supporters! Our group was incredibly motivated and inspirational to all they came in contact with, including other participants as well as the congressional leaders they visited.
In 2012, Clusterbusters® also visited the offices of the agency charged with reducing suicide in the United States. Following these meetings, and working with the agency, we, along with our medical associates drafted training materials for all suicide hotline operators. No longer are the suicide hotlines unaware of “suicide headaches” and how best to handle such calls. SAMHSA
Our return to visit congress on The Hill saw our group grow to in excess of 20 participants representing cluster sufferers. Once again we continued to apply pressure for increased research funding as well as some other very important topics of interest. These topics are among those that were discussed with Congress during our visit to Washington Dc in April of 2013 and following up with the appropriate House and Senate subcommittees.
Click HERE to read the full report from the HOH 2013
There are no listings with Social Security Disability for headache disorders. In the case of cluster headaches, this can and does have many negative effects. Whether or not anyone wants to claim disability, the fact that the most painful condition known to man, repetitively, is not listed plays a large role in the condition being taken seriously by the medical community and all government agencies. This plays out from the FDA through SS and many others.
The fact that Clusters are not listed in the Blue Book helped pay a role in having oxygen treatments disallowed coverage under Medicare.
Building a base with other organizations that can help raise our voice has helped us makes strides in the medical community.
Clusterbusters® is a full member of the Alliance for Headache Disorder Advocacy with Bob Wold being on the Board of Directors. This organization is made up of some of the leading headache advocacy organizations and specialists in the United States. AHDA
Bob Wold, representing Clusterbusters® and cluster sufferers worldwide is a founding member and Vice Chairman of the emerging organization American Headache and Migraine Association. This non-profit 501 (C) 3 charity is the patient based wing of ACHE. Making sure that patients have a voice in the future of research and medical advancements among the medical community. AHMA
A large portion of both our advocacy and education efforts involves Clusterbusters® board members attending research and medical conferences and making presentations to explain cluster headaches, raise awareness among the medical community and build support for increased research and improved treatments. Finding more effective treatments for everyone is of utmost importance in our goals. Making effective treatments more easily available to everyone.
Groundbreaking research presented. This conference gave us the opportunity to present our research with psychedelics and highlight the lack of research on cluster headaches and the need for new treatments.
Presentation detailing cluster headaches and the need to relax laws that impede the process of research. Schedule 1 designation for psychedelics not only drastically slows the research process but also limit’s the numbers of top researchers willing to get involved.
This organization has always been one of our biggest supporters in educating people to the severity of cluster headaches and advocating for improved treatments. MAPS
This conference, held in New York every year, gathers together some of the world’s top researchers and medical professionals. Presentations by Clusterbusters® have helped build a base of support. This conference, like the others listed here, has helped us gain great publicity for cluster headaches and our goals. These conferences have generated hundreds of newspaper articles, magazine articles, TV news and documentaries. Horizons
This website is a depository of the latest information on past and current research as well as updating people on the latest projects in which Clusterbusters® is involved. Here you will find a collection of treatments and research data that has been collected over the years. www.clusterbusters.org
Our Facebook pages reach out into the world of social media to offer a place for people to come together to talk about the issues and find others with which to share experiences. Our community page can be found at: Facebook link
Clusterbusters® also has a corporate site to help keep everyone updated on all new events and announcements. Like and follow us for updates. http://www.facebook.com/#!/clusterbusters?fref=ts
Our message board, linked from this site, is a more private site where people can speak about clusters, treatments and keep up with all that is taking place in the cluster community. Meet others with clusters, discuss options and solicit opinions on everything from treatments to all aspects of living a full life with cluster headaches. http://clusterbusters.clusterheadaches.com/
One of our most successful missions over the years has been our desire to reach the public with information on cluster headaches as well as the need for better treatments. Many people affiliated with Clusterbusters® have agreed to be interviewed for news articles and TV appearances.
Our treatments and cluster headaches have been the focus of two television shows (House) as well as two different feature documentaries with National Geographic. Besides hundreds of feature stories within the WW Web, we have reached worldwide audiences with newspapers, magazines and medical journals.
Below is a short list of some of the more prominent publications: