Psiloscribe

Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters

Looking forward to seeing a lot of old friends and meeting a lot of new friends. It's already guaranteed to be larger than last year and we have a month to go!! If anyone is thinking about driving and maybe wants to meet up and drive with other CBers, please post here. It's not a bad drive from the Chicago area. BobW

Are Cannabinoids and Hallucinogens Viable Treatment Options for Headache Relief? Neurology Reviews. 2014 May;22(5):22-23. SAN FRANCISCO—Within the headache community, desperate patients have tried just about everything for relief. Patients have been using cannabis for headache for several decades, and more recently it has been suggested that hallucinogens may induce remission of cluster headache. At the Headache Cooperative of the Pacific’s Seventh Annual Winter Conference, Brian E. McGeeney, MD, MPH, discussed the use of cannabinoids and hallucinogens for headache. Dr. McGeeney is an Assistant Professor of Neurology at Boston University School of Medicine. Marijuana for Migraine Patient testimonials may abound, but as far as evidence-based medicine goes, “there are no blinded studies for the use of cannabinoids for headache,” Dr. McGeeney pointed out. The use of cannabinoids for pain started in the 1970s. A short paper in the early 1970s in Headache described what was essentially a withdrawal headache, “which you can certainly get, especially with the daily use of cannabis.” Goadsby et al demonstrated that the endogenous cannabinoid receptor ligand anandamide, which is the most well-known endogenous cannabinoid, is able to inhibit dural blood vessel dilation from electrical stimulation, administration of calcitonin gene-related peptide and nitrous oxide, or capsaicin administration. This inhibition is reversible. “This goes in some way toward providing a theory of how this [drug] may work for headache or migraine,” Dr. McGeeney said. “Cannabinoid receptors—CB1 and CB2—are located throughout the CNS and even in the peripheral nervous system. Cannabinoid receptors are 10 times more prevalent than opioid receptors.” In the brain, cannabinoid receptors are found not just in the cortex, but in deep brain structures as well. “And if you think it’s going to work in headache, it is probably going to have a role in particular in the brainstem,” said Dr. McGeeney. One theory is that the transmission of the trigeminal impulse of the first- and second-order neurons can be modulated by descending influences that can be either excitatory or inhibitory. Some evidence suggests that cannabinoid agonists may affect transmission along the trigeminal nerve. “And that is a plausible theory as to why it may work in headache,” Dr. McGeeney said. “Patients tell me that Cannabis indica is more likely to give them headache relief than other types.” Hallucinogens and Headache “There is some truth to claims that psilocybin works to abort a cluster headache,” Dr. McGeeney said. “But generally, the use of psilocybin in cluster headache patients is more to induce a remission of repeated attacks, not to treat an acute attack.” The reason why psilocybin may be helpful is its similarity to serotonin. The indole ring is a key part of the serotonin agonist, and the chemical structures of serotonin, tryptophan, and most hallucinogenic compounds are similar. Hallucinogenic compounds that cluster patients may be using include lysergic acid amine (LSA)–containing seeds, the psilocybin mushroom, and lysergic acid diethylamide (LSD), which is much more difficult to obtain. The connection between hallucinogens and cluster headache began in 1998 when a Scottish man posted a provocative comment on a cluster headache website. He said, “I’ve been getting cluster headaches for many years, and I missed my fall cycle. And the only thing I’ve done differently is the recreational use of LSD. I wonder whether that has something to do with it.” This was met with skepticism in the cluster community. But gradually, more people started to pursue hallucinogens to see whether they made a difference. The first things they used were seeds—Rivea corymbosa, Hawaiian baby woodrose, and certain strains of morning glory seeds—which have hallucinogenic alkaloids in them. “It is perfectly legal in the United States to buy these seeds, to sell them, and to cultivate them, but it is not legal to ingest them or to soak them in water and then drink the water, which is rather disgusting and easily induces nausea and vomiting,” said Dr. McGeeney. Cluster patients are using these seeds to try to induce a remission. Albert Hoffman, of LSD fame, analyzed the ergot in those seeds—ergine and isoergine. The use of hallucinogens among cluster headache patients came to light with a 2006 paper by Sewell et al in Neurology. The authors surveyed 53 cluster patients, 21 of whom had chronic cluster headache. Half of those who used psilocybin said that it completely eliminated their attacks. “In speaking to many of these patients over the years, that elimination can be anywhere from days to months. But it is not rare to come across someone who says that psilocybin will eliminate their attacks for a couple of months,” Dr. McGeeney said. Patients are worried about arrest when they take these substances. Possession of psilocybin mushrooms is illegal everywhere. Psilocybin is a Schedule 1 drug. Fortunately for patients, buying the spores is legal in most states. Several vendors operate online. In California, Georgia, and Idaho, however, it is illegal to buy the spores. “I go every year to ClusterBusters meetings and meet these patients,” Dr. McGeeney said. ClusterBusters is a support meeting for patients who have cluster headache. “They talk about treatment, and that does include alternative treatments, but not solely,” he noted. “It is not necessarily everybody or even most people who are pursuing that option.” LSD has been around since the 1940s. “In practice, this is a much more difficult hallucinogen for patients to get,” Dr. McGeeney said. “These are ordinary people. Where are they going to get LSD? It is practically impossible.” Nonhallucinogenic Hallucinogens According to Dr. McGeeney, the evidence suggests that to gain the cluster–abortive benefits of hallucinogens, patients do not have to hallucinate. “You can take an LSD molecule and brominate it,” he said. “And you turn it into brominated LSD, which is nonhallucinogenic.” Is this method useful for cluster headache? That question started to be answered a few years ago. A 2010 study published in Cephalalgia described five patients, four of whom had chronic cluster headache. They were administered brominated LSD, and they did not hallucinate. At baseline, the number of attacks per week in the five patients was 40, 40, 35, 30, and 25. After treatment, all patients had close to zero attacks. One of the authors of the original 2006 survey in Neurology, John Halpern, is trying to bring brominated LSD to market in the United States. The regulations and red tape have been daunting despite herculean efforts by Dt. Halpern. “But we’re hoping that this may be an option in the near future,” Dr. McGeeney said.

Thank you all very much. Your support now, as always has been special to me and the entire family. I will write more later as we just had the funeral today. But I do want to address this more with the CH family. Bob

For those of you that have followed along through my nephew Jacob's long illness, I am sorry to report that he had a heart attack last night and passed away. Since his bone marrow transplant in 2009 he has been a very sick little boy. Throughout his struggles there have been many people here that have been supportive to him and his family, including me. Thank you all very much for that support as it has meant so much to me and the family. I could say a lot more and I will but at this point it's all just incredibly sad. Bob

Dear friends of Clusterbusters, People with all severe and disabling headache disorders urgently need your help. If you think that this topic may not affect you or someone you care about, consider that the SSA has not changed their guidelines in almost 30 years. If not you, someone you know will certainly appreciate a level playing field some time in the next 30 years. Cluster Headaches, also known as “suicide headaches” and Migraine, which is the 7th leading cause of all disability are just two of these disorders. Yet, the US Social Security Administration does not list headache disorders as disabilities in their Blue Book – the official list of criteria for how to qualify for Social Security benefits. Consequently, people disabled by headache disorders struggle unfairly to prove their legitimate disabilities. This situation is baffling, baseless, and grossly unjust. The Social Security Administration has recently been revising the neurological disorders Blue Book listings for the first time since 1985. Accordingly, Clusterbusters, the Alliance for Headache Disorders Advocacy (AHDA) and certain members of Congress proposed that they finally add a headache disorders listing. Unfortunately and without explanation, they have just refused to do, perpetuating a huge mistake. But there is still a brief window of time until April 28, 2014 for you to tell the Social Security Administration to change course. Write Social Security today supporting inclusion of a headache disorders listing, including Cluster Headaches, for fair determination of Social Security benefits for Americans truly disabled by headache disorders. Please submit your comment to them here: http://1.usa.gov/1gQS89a. Once you submit your comment, you will be issued a confirmation tracking number, though it may take up to a week for your comment to appear on-line. Please don’t submit the same comment multiple times. Also, please forward this message immediately to everyone you know that cares about someone disabled by migraine, cluster headache, concussion headache, or other headache disorders. How this non-listing affects people with cluster headaches: Included in the listing of impairments as proposed by the Alliance for Headache Disorders Advocacy (AHDA), are trigeminal autonomic cephalalgias (TACs). One of these TACs, known as cluster headaches, can be extremely disabling. Commonly called suicide headaches as the suicide rate is in excess of 20 times the national average, these attacks are among the most painful conditions known. Unrelenting pain of this magnitude leaves many people disabled for extended periods of time. Although there are no FDA approved medications specific to cluster headaches to prevent the attacks, often the medications prescribed attempting to mediate this pain, leave the patient unable to perform their current job responsibilities. Leaving this condition unlisted is grossly unfair and leaves one of the most undeniably disabling conditions invisible. This invisibility not only hurts the patients and their families, but stifles research and continues to negatively impact all insurance coverage. Listing this condition does not guarantee approval or benefits and most patients are able to function well enough to work at gainful employment and will not file for benefits. What listing does do for every sufferer is to legitimize their pain and the struggle that they and their families endure. In essence, the SSA is saying that this condition should remain invisible. The fact that the government agency assigned the duty of classifying the levels of disability that medical conditions can inflict upon it’s citizens, judges a condition that causes people to kill themselves at alarming rates, deserves no listing. As headache disorders are many and each one varies in severity and the disability that is inflicted, they should be listed in the registry as directed by the AHDA and those people that meet the suggested inclusion criteria, should be considered for benefits. The exclusion of cluster headaches and other headache disorders has a serious negative impact upon hundreds of thousands of sufferers and their families. Exclusion stymies education of the medical community as it dismisses the seriousness of these disorders. This negatively impacts the career paths of professionals into this field. Few doctors specialize in headache treatment, little research is conducted, and safe effective treatments vary from minimal benefit with severe side effects to no benefit at all. A portion of the blame for this untenable situation is the lack of a spot in this registry. Consider the research institution that wants to open the registry to see where they can begin research to relieve the most pain, the most disabling conditions, to make a positive impact upon people that are suffering. They can open the book up and never find a mention of a condition that is considered the most painful condition known to man. We have no medications. We see no research for help in the future. We are non existent to SSA. All the while this painful chronic condition is causing our members to take their own lives. Please let those that remain and suffer know that the SSA acknowledges their existence by including them in the Federal Registry. The Social Security Administration has been entrusted by citizens of the U.S. and Americans with Disabilities Act to address and codify disabling conditions. In addition to the above action, Clusterbusters asks U.S. citizens to "sign on" to our letter written specifically to Acting SSA Commissioner, Carolyn Colvin. On February 11th, 2014 Ms. Colvin's office hand delivered a Response Letter, to Clusterbuster advocate John Bebee. We feel strongly that this letter essentially perpetuates invisibility of chronic migraine and cluster headache by stating "We generally evaluate chronic migraine and cluster headache in adults under the most analogous listing-non-convulsive epilepsy-...". We believe the agency has a duty to understand the only "analogous" feature between cluster headache and epilepsy is they are disabling. Please visit our sign-on petition on Change.org at:: http://www.change.org/petitions/acting-commissioner-carolyn-w-colvin-segregate-and-list-independently-in-the-blue-book-of-disabilities-chronic-migraine-cluster-headache-currently-hidden-under-epilepsy?utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_mobile&recruiter=61022944 Thank you, Robert A. Wold President, Clusterbusters, Inc.

I would ask you all to be a little patient with us. Yes there have been recent changes on the website and more will be coming. There are many good things about social media and being able to reach more people, but this also creates additional problems. The increase in the numbers of people we can reach with helpful information is proportionate with the numbers of detractors and those that would do harm to our goals. The bigger steps we take forward and becoming more accepted and understood, the more drastic the steps people will take to hurt us. For us to be able to continue to spread the word we must be smart. Our Clusterbusting documents have recently been granted a copyright and a copy now sits in the Library of Congress. Now, not only are these treatment methods available from Clusterbusters, but the US federal government is also making these documents available. I think that is pretty cool and an important step in what we are trying to do. Please be assured that changes we make are regarding this issue are intended to assure that this information will ALWAYS be available. This is the direct link https://clusterbusters.org/?page_id=1618 It can be found on the website, in the treatment tab at the end of this section: Response of Cluster Headache to Psilocybin and LSD – R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr Note: the above link will download and open a .pdf file of the report Published in Neurology in 2006 and linked here from the MultiDisciplinary Association for Psychedelic Studies (MAPS). The abstract reads: The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD)to treat their condition. Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks; 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension. Research on the effects of psilocybin and LSD on cluster headache may be warranted. This case report lead to the development of a research protocol into the potential use of these substances in the treatment of cluster headache. While there are yet no clinical trials underway, we provide an easy to read overview of the protocols and procedures that were/are being discussed and developed for future research projects in the following pages – click here. It is in the "following pages-click here" link at the end. Bob

Please check out our report on Headache on the Hill in the Advocacy / Events forum. Good things happening, Bob

Here is our report on our trip to DC. Enjoy! Headache on the Hill 2014 Collaboration In order to gain forward momentum, collaboration is required. The reward? A profoundly deep and enriched sense of community. "Coming together is a beginning, staying together is progress, and working together is success." - Henry Ford The Alliance (AHDA) In the fall of 2011, Clusterbusters joined The Alliance for Headache Disorders Advocacy, sending our first team of advocates to the Capitol in the spring of 2012. The Alliance truly embodies remarkable resolve toward the care and commitment to excellence in medicine for all primary headache patients. Travel and the Polar Vortex Past Headache on the Hill (HOH) events have been held in the spring months of March and April. Since this was our first year to have winter appointments, many were concerned about safe travel. Normal winter weather can affect travel plans with delays, etc., but this was no normal winter! All over the nation, polar vortex warnings bombarded the news. Still, we nearly doubled our team. Just two days later, the capitol closed due to the severe conditions. Serendipity? Arrivals and Training Day Everyone arrives with their own blend of excitement, purpose and trepidation. During our time in Washington DC, the lobby of the hotel served as a hub. Lively consortiums of advocates greet one another here exchanging just the right dose of kinship. By Monday afternoon, the room smoothly transitions into the backdrop for filming our first national media coverage (see Media on The Hill section for complete details). Slowly the lobby thins as we make our way towards the meeting room where we reassemble and training begins. Opening remarks put an emphasis on our collective approach to the Tuesday appointments. Everyone in the room is acknowledged as being a vital part of the process. Patients, neurologists and members of professional organizations each play an important role in our success. From here, two major themes begin to emerge. The first is “HOH is a conversation”. And the second is, “Primary headaches are costly, prevalent and neglected”. As the training continues, it becomes clear not only are primary headaches neglected by the National Institutes of Health (NIH) but all of neurology is neglected. To combat this neglect, the American Academy of Neurology (AAN) hosts a similar event known as Neurology on the Hill (NOH) annually. Knowing this makes it all that much easier to become an advocate and to be part of the conversation. Next time you have an appointment, please let your neurologist know you support both HOH and NOH and urge them to take part. The Requests aka “Asks” Each year, The Alliance Board of Directors prioritizes the talking points for HOH. These are refined and eventually become the requests which are often referred to as our “asks”. An introduction outlining the Burden of the Disorders is included and punctuates the need for all the “asks” to be granted. Together this material becomes what is known as our “Leave Behinds”. The following is an abbreviated version outlining our requests with links to access the actual “Leave Behinds” 1- We will ask NIH to give us a fix for the unfair reviews that grants for migraine and cluster headache are getting. This may seem like a technical thing but would make a huge difference towards boosting research, as many researchers are turned off by perceived unfairness in the review process. Leave Behind_Ask 1 2- We will ask Medicare to cover oxygen for cluster headache Leave Behind_Ask 2 3- We will ask the Senate to renew funding through the military budget for funding for chronic migraine and post-concussive headache. Leave Behind_Ask 3 As we near the end of the training session a mock meeting is held. It is a lot of information to take in, but one thing is certain, all advocates are held in high regard as we simultaneously coalesce into a team. Hallmark of Collaboration As primary headache patients we know there are hundreds upon hundreds of possible requests which makes choosing three a very difficult task. This year, the first cluster headache patient specific ask was included. When you consider prevalence of the different primary headache patient groups, this was a huge acknowledgement to us and our advocacy work with The Alliance. Huge! Meeting Day Clusterbusters sent 35 participants from 18 states to join The Alliance for Headache Disorders Advocacy 7th annual “Headache on the Hill”. The total HOH team consisted of 77 advocates from 34 states who held meetings with 162 offices. To see the growth of the team and the progress achieved from year to year click on History of Clusterbusters attending HOH . It is impressive! After meeting on the capitol steps for a quick group photo we head off to our respective meetings. Warming up over a cup of coffee, Tom Klouda, US Senate Finance Committee hand delivers Social Security Administrations (SSA) Commissioner Carolyn Colvin’s response to cluster headache advocate, John Bebee. Recall in 2013 one of our requests was for the SSA to add both migraine and cluster headache to the Blue Book of Disabilities Listing. Although the response did not fulfill the requested action, adhering to our own theme of “It’s a conversation” we now have something to respond to. For SSA to completely ignore our request would have been far worse. The most compelling response coming out of the day was the overwhelming support of our request to overturn the CMS decision denying coverage of oxygen to cluster headache patients on Medicare. In fact, at the time of this writing Senator Mike Johanns (Nebraska) office has agreed to write a colleague letter. Once the letter is written it will be circulated throughout the capitol, gathering signatures of all those in support. We are very optimistic about upcoming changes in regards to the oxygen ask. Most of our advocates were able to secure pledges to sign a letter once it was written, from their congressmen. Everyone went in equipped to explain this addition of 02 coverage would both save money and supply an important first line treatment to help people suffering the type of pain they described. Doctors, migraineurs and cluster teams all came back with pledges. The Alliance is now making sure these pledges are kept. Bicameral –Bipartisan Primary headaches affect nearly every family in the United States, including congressional families. Often during the meetings the member (or their staff) will begin personally relating by saying “my father suffers” or “my aunt has migraines”. The prevalence is never disputed. Let’s take these thoughts one step further. Primary headaches definitely cross both bicameral (House & Senate) and bipartisan (Democrat & Republican) lines. In fact, advocates recap meeting responsiveness at the end of the day and highlight the “identifying” moment. We revel in these encouraging stories because odds are, these same members are equally excited to share our visit (and hope) with their own loved ones. Bottom line is everyone recognizes primary headaches impact a lot of people. We can just imagine their thoughts; “Of course this needs to be addressed” or “why hasn’t this been done already?” Media on the Hill In January, the consistency of our advocacy work along with the generosity of Ascot Media Group, Inc. produced the first nationwide Clusterbusters Press Release and yielded unprecedented media coverage. As a direct result of these efforts we received the following note from NBC; “Your WGAL-TV piece on cluster headache was syndicated and appeared in the following outlets: (see complete station list here) Thank you for participating in this interesting and illuminating piece.” http://www.wgal.com/health/video-cluster-headaches-cause-agony-for-sufferers/24677706 Dr. William Young, president of the AHDA and Clusterbusters Medical Advisory Board member teamed with advocate, Kirt Kessler to do the WGAL news piece. When WGAL confirmed their interest in doing the story, Clusterbusters was able to contact Kirt via the Cluster Headache Worldwide Map (please add your name). The map began as tool to end the isolation cluster patients experience by finding a local buddy and turned into an advocate resource. That’s excellence in collaboration! Many other news stories featuring cluster headache advocates were seen in print or were aired in the US media prior to, during and after our trip to the capitol. We extend a sincere “Thank you” to those who reached out to their local media connections and contributed. Each of these stories does make a difference; in fact we are certain these stories played a major role in attracting Al Jazeera America to film and produce the following piece during HOH. Reporter Tom Ackerman opens the story stating… “Describing the pain of a cluster headache is one thing, showing it is quite another as many patients have done by recording their own experience.” –Tom Ackerman, Washington DC Al Jazeera America Cluster-Headache-Patients-Seek-Pain-Relief-youtube-video What You Can Do There are numerous ways to participate in this growing community of primary headache advocates. When you upload a YouTube video or comment on news stories you are being an advocate. When you join and share via social media sites, you are being an advocate. When you donate to our fundraising efforts, you are being an advocate. Advocacy is an act of self-empowerment where one refuses to remain isolated and joins the conversation. Now is the time for all headache patients to politely yet firmly share our collective message with our US Representatives. Diana Lee, HOH advocate, writer and attorney shares in her blog titled “Taking Migraine to Capitol Hill for HOH ’14-What You Can Do” a wealth of information including easy-to-follow instructions to help you get started. This is a great resource on how you can let your representatives know you support the efforts of the Headache on the Hill team. Included within are office addresses, a complete recap of our “asks” and template letters. Let us know you’ve acted. Send a comment to us! What You Can Do-Write Your Representatives Today Fundraising Video Victory Our first HOH fundraising video is another great example of the fruits enjoyed when folks begin collaborating. Mollie Markins, daughter of advocate Lee Markins, United Way Videographer and owner of Markins Media began filming willing spokespersons 2 years ago during the 7th Annual Clusterbusters Cluster Headache Conference in Las Vegas. Mollie wrote, directed and produced this amazing video. 100% of this work was done with volunteer hours. The final 4:07 minute video was published on our “Causes” website where more than 200 people “Pledged” to share the video. Thank you to all who took the “Pledge” and shared. We nearly doubled previous HOH fundraising efforts because you did! Clusterbusters 2014 HOH Fundraiser Campaign-Victory HOH Advocates Share John Bebee- “We have no greater honor but to fight for the rights of others. Our fight begins in solitary and ends in a very public fight to honor those who suffered before us, with us, and more importantly those who have not suffered yet. Social change begins with an outcry. Together we will make them hear. Join in help with support and participation; there is much pain to go around for motivation.” Natalie Hart- “My son, Austin Jamerson and I went to DC, Capitol Hill, Tues. Feb 11, 2014. The day before, in our conference room at the hotel all of the individual headache groups formed one big group named, 'Alliance for Headache Disorders Advocacy'. In the room there were doctors, nurses, sufferers of Clusters and Migraines etc. I was so relieved to have 4 more people from my state of California join my son and I.. Doctors who we shared the day with, walking one on one with him all over Capitol Hill from building to building, tell Austin to call anytime he needs them. Incredible experience. Priceless! Thank you #HOH2014 Louise Barham- “ It is the most unforgettable experience to attend and participate in the HOH. Hopefully, Adam and I will never miss it.” Heather Keschinger- “This was my 2nd year with my husband, who suffers with Chronic Cluster headaches. 1st year was a total life changing experience for both of us. We are everyday people and would never think we would be on the hill advocating for anything! You feel normal because everyone’s story is similar and knowing we are all advocating for all Headache Disorders, the amazing people fighting through cluster attacks while on the hill , life altering.” Bill Mingus – “I felt we made our cause heard with those we spoke to and I got a chance to speak with a couple of medical professionals in my group about high flow O2 and the difference it could make in their patients lives.” Lee Markins- “HOH was a very moving and positive experience for me this year. One of our visits led us to the Senate floor while they were in session and we got to meet Senator Ayotte outside the chambers. During our visit we spoke of how headaches affect our lives and the need for research. The aides we visited listened and asked questions. I am waiting to hear back from them regarding our “asks”. I would recommend that anyone who suffers headaches attend this event. We can make a difference for millions of people.” Steve T Keschinger- “ Looking around the group, young and old alike, we all know the intensity of our condition. Now we are on Capitol Hill speaking with representatives and aides about our situation. The meetings are not stressful like I had imagined, just a chat around a table or a couple of hallway meetings. The aides are very receptive, let’s face it, who hasn’t had a headache? They understand and want to help. All the meetings are planned professionally. This is a great event to attend. Add it to your bucket list!” Cindy Reynolds- “For me, the highlight of the experience is always the peer to peer relationship with all the advocates, including some of the top neurologists in our country. I see firsthand how driven and determined each and every advocate is to increase headache research funding. Year after year HOH attendance increases, swifter responses are coming from the offices regarding out “asks” and the unity among patients & physicians is beyond uplifting!” Todd Pittard- “This was my second year attending and am happy to see the amazingly fast results each year. Truly a life changing event and am honored to be part of this team! Sincere Thanks To the 35 Clusterbusters HOH team members and their families who supported these advocates in order to continue our “conversation” on The Hill our sincerest “Thank You”. We know you contributed on many levels. You professionally represented not only your own powerful message but the entire patient group’s message of “Primary headaches are costly, prevalent and neglected”. Many of you came while managing your own pain. Our momentum continues to gain and attract new and positive attention because of your selfless gifts. A common understanding that attendees have is that although progress can be slow, progress is made. Our stories are heard and we build upon each event’s progress year after year. Empowerment increases as individuals make progress for not only themselves and their families, but for all cluster families. The rewards this type of advocacy work often provides far outweighs any thank you that we can offer. It was a privilege for us to witness this incredible collection of advocates doing wonderful work for others. You are making history, changing the past and improving the future. Thank you. Cindy Reynolds HOH Clusterbusters Event Coordinator advocacy@clusterbusters.com

I received some terribly tragic news today that I'll share here because I know that some of the old-timers here will remember who the news is about. When Clusterbusters was just forming, I was contacted by the wife of a cluster sufferer. So I have known these people though email, postings & phone calls for about a dozen years. I am deeply saddened and downright distressed to say that I heard word today and confirmed this in news articles, that Jaques Dreyfus, known here and in the old yahoo group as Rex Tangle, took his own life and that of his wife, Heather. They were living in Portland when this happened a couple of weeks ago. News was being withheld because they needed to locate his family living in France. Heather was one of the nicest and most caring supporters I have met. Jaques, an accomplished musician always appeared to be a gentle and loving man. I am at a loss as to why this has happened. I probably never will be able to understand this terrible act and loss. Rex actually wrote a 10 song album for Clusterbusters many years ago. An instrumental set that was meant to be used as a peaceful background set for listening. One of the tracks was used for years on our old website. I'm sure some here remember listening to the tracks. I know some have the CD. I imagine the how and why isn't important. I do know that Jaques suffered greatly with clusters. He went through many of the same obstacles we all seem to traverse. I know he once flew home to France to have major dental work done in an attempt to "fix" his clusters. I know that when they moved, Heather called looking for help in finding a good doctor and help in getting set up with 02. She would always be the one reaching out for help for Jaques. Maybe that was part of the problem. Rex couldn't reach out for help himself. I guess that is one reason I'm even posting this. To let everyone here know that if you need help, reach out for it. You owe it to yourself and you owe it to your supporters. There hasn't been a person born yet that hasn't needed help at some point. Leaving it up to your spouse or other loved ones is not only not fair, but destructive to yourself and your relationship. Everyone here knows how difficult life can be. No one would ever think less of you for reaching out for help. Quite the contrary. Reaching out shows not only strength but a determination to make a better life for everyone involved. I know that Rex had some very close friends here and I hope they don't mind my posting this. Rex did his share of supporting others here. Sometimes it's easier to offer support than ask for it. If you're interested in checking out his website, this is the link; http://www.rextangle.net/bio.html R.I.P. Heather and Jaques! Bobw

Hello Friends, Sorry I don't get here more often. Just getting my feet back on the ground following our trip to DC. We got a lot of great work done by "busters and others. This is the latest news story. Thanks go out to Kirt, Dr. Young and Ascot Media Group for helping with our press releases. http://www.wgal.com/health/video-cluster-headaches-cause-agony-for-sufferers/24677706 Bob

No Corporate funding for research at this time. Red Bull has been approached several times and they are not interested at all. Bob

Anyone near the Lancaster/York PA area? Want to be on TV? Let me know, Bob

I agree with Tony about what or who is behind this. That said, the page was a mess with a lot of bad information. Besides people not knowing clusters, but thinking they do, added a lot of bad info. One of the reasons for that is partly due to their rules. They will find very little secondary info on ANY cluster medications. There has been very little research and all but one drug is just a hand me down from other ailments and never tested in clusters. At least not "re-tested" This is partly due to the fact that when something starts working, and it has gone thru other safety testing, it isn't tested again. If it works, they use it. Take 02 for example. We have this same fight with Medicare and that's why we are going to DC. 02 has been the gold standard in cluster abortives for 60 years. but there is very little research for 02 and clusters that would fit Wiki's rules for secondary proof. You want more proof? Ask the hundreds of thousands of cluster sufferers using it. As we are telling CMS, it would be unethical for further testing. Do we really need to give 100 cluster sufferers placebo air and make them suffer so that Wiki, and Medicare are satisfied? They have to decide if they want a "helpful" article or just an article. Do they have secondary proof that the hypothalamus is involved? Or are all mentions of it based upon Goadsby's small study using MRI's? These types of rules are what cause people to suffer for years either without 02 at all or getting a script that says use 4-6LPM. Doctors using old or censored information. Most things people are using to help with their clusters have come around over the last 15 years and only through anecdotal information. From high flow oxygen to cluster masks to energy drinks. People getting their "help" from Wiki will be 15 years behind. Unfortunately, there are many people that put rules above suffering. Bob

So is a page about cluster headaches a page of medical information? Awful wide brush. Wiki is not a medical journal. But even medical journals specifically run articles on treating various diseases and conditions with illegal drugs. Treating clusters with psychedelics is acceptable for The Lancet and Neurology and Cephalalgia but not Wikipedia? Funny if it wasn't so sad. if Wiki is a medical journal, then there are MANY pages devoted to illegal drugs. Pages on Psychedelic therapies. If it's just that cluster headaches are a medical journal, then research is one of the most important aspects of any medical journal. To researchers, there is no difference between psilocybin and CGRPs. They are all just molecules to them. You use the same keyboard to type up the research and same instruments to gage their actions. All the microscope sees is a molecule. Yes there are plenty of pages devoted to illness that reference illegal drugs. Example... OCD Psychedelics such as LSD, peyote, and tryptamine alkaloid psilocybin have been proposed as treatment due to their observed effects on OCD symptoms.[81][82] It has been hypothesised that hallucinogens may stimulate 5-HT2A receptors and, less significantly, 5-HT2C receptors, causing an inhibitory effect on the orbitofrontal cortex, an area of the brain strongly associated with hyperactivity and OCD.[83] with research cited. This is not an argument that can be won or lost. There is no legal, ethical or common sense ground that can be defended. It is just someone's misguided opinion at play and you can't win an argument with ignorance. I am actually happy to debate psychedelics when it comes to safety, efficacy, research, legalities, dangers, you name it. heck, I'm happy to debate them on moral grounds since I need to do that when research is involved. There is always a discussion on morals and ethics with ANY research like this and trying to get things past an IRB. Fine. But this isn't a debate. Since it can not be won, this person has decided to censor the discussion based upon his own personal feelings. We are not his children and "because I said so" is not an acceptable answer. This is exactly the type of thinking that has gotten us to the point where it is ok for someone to spend $100,000.00 having a wire inserted into the middle of his/her brain (experimentally) (and safe because only 1 person out of the first 6 died) but it's not ok to pick and consume a mushroom in an experiment to see if that same person can stop his/her clusters. Yes we are sometimes desperate and make bad decisions. One of those first 6 that had the DBS made a very bad decision, and died. But I don't want that information censored either. Over and out Bob

We have come a long way and I want to thank everyone that frequents this message board and has been with us for all these years. Many people here are responsible for making Clusterbusters what we are and where we have arrived. We have been thru a few self-appointed censors along the way and run into more than a few roadblocks but because of many people here, we've kept our eye on the real reason we are here and do what needs to be done to move forward in a professional manner. Thanks to everyone for your support. Support of Clusterbusters and all the people it represents and thank you all for the support you've shown to me and my family. Bob

Clusterbusters is both pleased and proud to announce the addition of a medical advisory board to our organization. This review and advisory board includes some of the finest headache specialists and health professionals in the country. We greatly appreciate these board memberÂ’s input in our educational, advocacy, awareness and research endeavors and their assistance in helping make Clusterbusters a leading and trusted voice within the patient, medical and governmental administration communities. Our health professionals help design and facilitate our programs to educate and advocate for patients, their supporters, other medical professionals and government agencies. Clusterbusters fully understands that along with chronic pain conditions such as cluster headaches and other headache disorders, there are also many psychological issues that need to be addressed. Because of this we have professionals on the board that deal directly with these issues. The new members of our Advisory Board are; Dr. Robert E. Shapiro Department of Neurological Sciences University of Vermont College of Medicine Dr. William B. Young Thomas Jefferson University Hospital Philadelphia, PA Jefferson University Physician Dr. Brian E. McGeeney Assistant Professor of Neurology Boston University School of Medicine Boston Veterans Administration Medical Center Boston, MA Dr. John Halpern Assistant Professor of Psychiatry Harvard Medical School Boston, MA, USA Biological Psychiatry McLean Hospital Dr. Larry Schor, PhD Professor of Psychology University of West Georgia

I want to thank everyone for your efforts on this. It is a very important issue. I'm sorry but the board of directors of Clusterbusters just does not have the time to chase this person around the internet. We are very busy trying to get things done and make some progress. Wikipedia is an international site that covers more than just the US and laws in the US should not stop any site from publishing the truth. Laws regarding psychedelics change from country to country. Should one person in the US decide how much of the truth someone in Denmark is allowed to read? Whether some people like it or not, there is medical information regarding psychedelics and it should not be censored because of one person's personal agenda. There is only one person/group doing this and he is not a doctor. If he was a doctor, the only agenda he should have is to do no harm. Keeping information from people can harm them. Medical marijuana is illegal under federal statutes. Should all references to it be removed from all the pages where information on it helping different medical conditions, be removed? Should it only be made available in states where it is legal? There is no legal reason for references to the use of psychedelics to treat cluster headaches, or all of the research on it, be removed. The research itself appears on government websites. The medical community has always understood the possible benefits of psychedelics and most have been hampered in advancing research. The medical community supports what Clusterbusters does, what we stand for and is looking to help people with cluster headaches. Evidence of the support within the medical community for Clusterbusters and the research, education and advocacy work that we do, can be found in the post about the additions to our organization with our Medical Advisory Board. 'nuff said Bob

We are now able to release the announcement that the 2014 conference will be held on September 18 to 21, 2014 (Thursday to Sunday) at The Inn at Opryland in Nashville TN. (A Gaylord-Marriott Hotel) Registration details, hotel links and additional information, including speakers, will follow but we can confirm a room rate of only $99 per night. Looking forward to seeing everyone!! Bob

Dr. Larry Schor Conference Co-Chair Lee Markins Lee with our special auctioneer Ruthie Harper Conference Chairman and Board member Doug Wright with Dr. Schor One of our special speakers, Dr. Brian Mcgeeney More to follow.....just a sampling ;-)

Thank you Kyle, No I wont be able to make it there this weekend. Hopefully I will be able to get out there for the services. Bob

In Memoriam The cluster headache community, along with his family, friends and all the other communities he touched, was deeply saddened to learn of Andrew Sewell’s passing.   As people age, they often begin to wonder about what type of legacy they will leave. Andrew may not have spent much time wondering due to his young age, however he would be, and his family should be, proud of his legacy within the cluster headache community. He may have been aware of the positive impact he had upon so many individuals he helped personally. He may not have been aware of the life changing affect he had upon tens of thousands of cluster headache sufferers around the world.   His early work with us and MAPS while at Harvard, with cluster patients and the use of psychedelics as a breakthrough in treatments, lead Andrew to meet with them and understand the significance the condition had upon them. As it relates to this community, his legacy not only includes impacting the lives of those who suffer, but also their families. A positive change for so many that will become generational in nature.   Following his introduction to this community nearly a dozen years ago, Andrew dedicated a great deal of his time to helping as many people as he was able to reach. Personally helping all that contacted him, building a website to bring information and support to those afflicted, and continuing to advance these treatments through research and education. Andrew knew that this isn’t always the easiest research path, nonetheless he never stopped working for people that suffer from this disabling condition. He was the lead investigator on a new study that is currently underway with Clusterbusters.  Andrew became aware of these treatments helping in not only eliminating this dreadful physical pain, but also helping heal the emotional damage that chronic pain such as this causes.  When a doctor ends a patient’s pain and also heals their psychological damage, he is certainly appreciated and revered. When a doctor is an integral part of doing this for tens of thousands of people, with more to follow even after his passing, he leaves a community incredibly appreciative, stunned, saddened and mourning the loss of a great advocate and friend. Bob Wold Andrew at some of our conferences

Thank you Kyle. I agree Dan. Yes that is the correct address (above) to send cards. Short notice as these things always are but, they are having a Celebration of Life get together at the above address on Saturday, 7-27-2013. It starts at 2 PM. FYI, he was married in 2011 and his wife's name is Nikki. They are looking for any pictures that people may have that they will be putting into a video for display. I will be sending what we have from the years of conference appearances and pictures with attendees. People he helped along the way. If anyone has any pictures they would like me to send along, send them to me in email so I can pass them along. psiloscribe@yahoo.com They will be holding more formal services at a later date to be determined and will be help in Ridgefield CT. I will pass that info along when it's available. Bob

They are still not sure of the cause of death. he made it through surgery. Awaiting autopsy results. They are having an open house this Saturday, the 27th at his home and are planning a memorial at a later date. I will get the info on the memorial and an address where people can send cards etc. More info as it becomes available. Bob

Its with deep regret that I have to inform everyone here about the passing of Dr. Andrew Sewell. I don't have a lot of details yet and will follow this up when I have more. I will release more info as it becomes available. I have been told that he died during or following surgery due to complications. Andrew was with us from the beginning with the early work with psilocybin at Harvard. He also did a study with us with LSA that provided a wealth of data and information on the LSA seeds that many people now use for relief. He was currently working on another study with us. It was during that early work with Clusterbusters and psilocybin that many people became very close with Andrew. I know that many friendships remain and there are thousands of people getting relief today that Andrew was instrumental with his involvement. Following Andrew's early involvement he remained committed to helping people with cluster headaches and even opened up a website to help. http://www.clusterattack.com/blog/home/ Bob