Organization Brings Hope to Those with Cluster Headaches
Synopsis and Key Points:
ClusterBusters is a non-profit research and educational organization dedicated to finding effective treatment of cluster headaches worldwide.
Main DigestA cluster headache, dubbed 'killer' or 'suicide' because of its intensity, has been described as the most severe form of pain a human can endure - even worse than childbirth, according to some women. They are characterized by recurrent bouts of extremely painful, one-sided headache attacks of relatively short duration, normally lasting between 45 and 90 minutes and often occurring at night upon entering REM sleep. They are most often clustered over a period of several weeks, normally lasting about 6 - 12 weeks, although in 10% of the cases there is no break and people suffer chronically. Victims usually cannot remain still and pace or rock - even becoming violent and hurting themselves in an attempt to alleviate the excruciating pain.
A neurological disorder characterized by recurrent, severe headaches on one side of the head, typically around the eye. There are often accompanying autonomic symptoms during the headache such as eye watering, nasal congestion and swelling of and around the eye, all confined to the side of the head with the pain. Attacks occur regularly for 1 week to 1 year, separated by long pain-free periods that last at least 1 month, possibly longer. They are four times more common in men than women. The headaches can occur at any age but are most common in adolescence and middle age. They tend to run in families, passed down through genes.
A common myth is that these headaches are very rare yet in actuality they affect the same number of people affected by M.S. This acceptance of being "very rare" is further exemplified through the practice of prescribing off-label remedies (migraine patient medications, blood pressure medications, bi-polar medications, anti-seizure medications) which often fail to end the pain. With so many people in our country suffering from this condition, it's hard to understand why there has never been a medication approved by the FDA specifically for treating cluster headaches!
ClusterBusters, Inc. is an IRS-approved 501 (c) (3) non-profit research and educational organization dedicated to finding effective treatment of cluster headaches worldwide. Their Mission Statement reflects their ongoing efforts involving the research, education, support and advocacy related to cluster headaches. Robert A. Wold, president and founder, is also on the board of directors for The Alliance for Headache Disorders Advocacy, and is vice-chair of American Headache and Migraine Association (affiliated with ACHE and AHS). ClusterBusters' Medical Advisory Board includes some of the finest headache specialists and health professionals in the nation. Their input has been crucial in making the organization a leading and trusted voice within the patient, medical and governmental administration communities. ClusterBusters' also have professionals on their board who can deal directly with the many psychological issues these patients live with. They offer a patient-specific community which empowers individuals and inspires action.
ClusterBusters began in 1998 when a man started posting on an internet message board about his success in not only treating his cluster headache but also preventing his usual cluster cycles by using low dose indole-ring hallucinogenic compounds. It was early work and contributions from ClusterBusters led to the development and publication of the article: Response of cluster headache to psilocybin and LSD by R. Andrew Sewell, MD, John H. Halpern, MD and Harrison G. Pope, Jr, MD. This paper was presented at the National Headache Foundation Research Summit in February 2006. Soon after, the medical research community started to pay attention to the success of these treatments, became involved in research, and started to listen to what the organization had to say.
The non-hallucinogen 2-bromo-lysergic acid diethylamide as preventative treatment for cluster headache: An open, non-randomized case series, was published in the 2010 Journal Cephalalgia, thanks to the efforts of Doctors Matthias Kart, John H Halpern, Michael Bernateck and Torsten Passie, and sponsored in part by ClusterBusters - who continue to be actively involved in the development of BOL for the treatment of headaches.
While ClusterBusters was organized to operate exclusively for charitable and educational purposes, they also help members find solutions to problems that exist as a result of these headaches. They encourage, participate in and fund research into finding a cure for, and the causes and treatments of, cluster headaches, and keep members informed about the research and provide resource materials to them.
Education of the cluster headache community, medical community and general public is advanced through the organization's annual Cluster Headache Conference which is held in various locations throughout the United States. The conference grows in attendance each year and is the largest annual gathering of cluster headache patients, bringing together the patient and medical communities, including highly respected headache specialists and researchers. With so little research being done on this condition in the past, even the National Hotline for Suicide Prevention had no information until ClusterBusters provided them with a phone call protocol in 2012!
ClusterBusters' "Headache on the Hill" event will take place February 10-12 in Washington when their top officials will meet with congressional leaders to get additional funding and a push for Medicare and Medicaid recipients to receive coverage for this therapy - which currently is denied. Board member Kim Robbins, who is a former Medicaid recipient and the organization's Social Security Disability specialist says, "The medical community, as well as the Department of Health and Human Services, deems treatment with oxygen as highly effective, safe, and inexpensive in comparison to other acute treatment options; however, CMS repeatedly denies this medical therapy to some of our nation's most vulnerable population - the disabled, elderly and low income." For more information, Kim may be reached at: firstname.lastname@example.org.
Funded directly and solely though donations, the non-profit is currently participating in several research projects including the study of Bromo-LSD, genetics, PTSD, the efficacy of prescription medications, and cluster headaches. Among the institutions they work with are Yale Medical School, Rutgers, Harvard Medical School and McGill University. Through their website, large member email database and various social media outlets, they are actively involved in educating the medical community and headache communities. This includes currently available treatments for cluster headaches as well as keeping abreast of ongoing clinical studies involving advanced treatments and research. Their membership includes the patient/supporters and their families, medical and media interested parties. For more information on the work being done at ClusterBusters, please go to their website: www.clusterbusters.org
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