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Psiloscribe

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Everything posted by Psiloscribe

  1. Yes it is big news. Thanks for moving it to the general board also. Bob
  2. Thank you all for your continued support. I can not release any more information at this time but rest assured that it is very big news. Bob
  3. Psiloscribe

    Need a little help

    I haven't heard any updates on Ralph's (from Ralphsters spores) but know he isn't in business anymore. If anyone ever hears anything about him please let me know. In the meantime, I need a few names of reliable sources for spores and other supplies such as Skullcap. I want to contact them about a few things including if they'd like to participate in our conference coming up in September. The general board probably isn't the best place to be discussing all this but I wanted to get to everyone so please just send me a PM if you can help out with some info. Or just send me an email at psiloscribe@yahoo.com I've also had a very difficult time finding the old you tube video (set of 4 or 5) about growing that I used to like the best. It was by "RoadKill" Anyone have a link? Or suggest a new set to use as one to help people out the best. One that handles the basics of the PF Tek. Thanks very much for any help. Bob
  4. Psiloscribe

    Research project

    No this is not the BIG news that we expect to release soon but it'll be the start of a string of interesting work that will be shared. I have spoken with these gentlemen several times and they seem genuinely interested in developing something that could be beneficial to people with clusters. They are looking for about 10 people to take part in this. If you want more info before contacting them you can send me a message and I can share a little more than what can be posted publicly. A North American health care company is developing a new (improved)treatment for Cluster Headaches. The Company is currently doing market research and is requesting a 1 hour phone interview. Your input will help in bringing new treatments to the market for Cluster Headache suffers. If you are open to being interviewed please email ClusterHeadAcheResearch@yahoo.com and provide answers to the following questions. Only those selected for an interview will be contacted: • Do you live in North America – Y/N - ___________ • Are you available for 1 hour phone call – Y / N - __________ • How do you treat your Cluster Headaches Today -____________ • Please provide your email address - ___________________ • Please provide your phone number - ________________________________ • Do you work for a market research company, an advertising agency or a health care company – Y/N - ____________ • Do you suffer from episodic or chronic cluster headaches -_____________ Sincerely, Jon and Glenn
  5. Psiloscribe

    Literature section?

    Yes, good point. This is something that we have been wanting to put together for here and the website. If there is anyone that would like to volunteer to work with our Documents Committee to pull it all together, write to me at rwold350@comcast.net Bob
  6. Dear HOHers, This year’s Headache on the Hill will be held in conjunction with the American Academy of Neurology annual meeting in Washington, DC. House and Senate visits will be on Thursday, April 23rd , and preparatory meeting on Wednesday, April the 22nd. This year sign-up will be different than in the past. Simply email Shirley Kessel happyislander@comcast.net , who will be assisting us in the arrangements, and she will send you the application form. She will also give you hotel information. Please note that like last year the AHDA will not be reimbursing for travel. They will be reimbursing non-neurologists $200 for their hotel room. We have been allowed to reserve a small number of rooms by the Academy – so first come first serve for rooms where the meetings will be held! If these rooms are taken, and only more expensive ones are available, unfortunately they will still only cover $200. We are also working on securing additional rooms at a nearby hotel where we may all be able to reserve rooms and is only a short distance from the convention center/meetings as well as close to the Capital. We will announce this info as soon as possible. Here is what we know about the program so far. We will meet in the evening at the Convention Center at 4PM. You will be given passes to get into the meeting room. We will be given our visit schedule at the end of the meeting, and then meet for photographs in front of Congress at 8AM on the 23rd before going off to Congress Clusterbusters will be awarding five (5) travel scholarships in the amount of $250.00 to those most in need of help getting to DC. These will be awarded based upon need and preference will be given to those residing in states that might not otherwise have representation. One of the most important factors in getting results is to make our presence known in as many offices as possible. For consideration for one of these travel scholarships, please write me at psiloscribe@yahoo.com and I will send you an application. Thank you again to our membership for all your advocacy work in the past. I look forward to seeing you in Washington and to having a great HOH. I will be posting additional information as it becomes available. Bob Wold President Clusterbusters
  7. Psiloscribe

    More help?

    We have some exciting stuff going on this year and I want to be able to expand our reach as far and wide as possible. Our patient registry is going to be very important to our work and cluster research in general going forward. The registry can not be changed in any way and all data must be collected into this one registry. One problem is for people that don't speak English being able to not only find but to understand and complete the registry. We have a German translation that will be available to help our German family members to complete the registry. If there is anyone here that can help us add more translations it would be greatly appreciated. I know we have some French, Dutch, Finnish and many other members from around the world. Help us spread this important registry to your fellow countrymen and women. if you can help, please post here that you will help out as well as sending me a PM so we can work together on this. The registry is located at: http://tinyurl.com/n9ou73a Thanks very much for your help. A translation will help add to the worldwide face of clusters and gather important epidemiological information and just may save someone's life down the road. Bob
  8. Psiloscribe

    A little help please

    Thank you all very much. Polling is closed. More info to follow soon. Bob
  9. Psiloscribe

    A little help please

    I need everyone's help please. If you haven't already answered this on Facebook: I need the answer to the following question and not to be rude, but, I don't need a lot of reasons why or questions, so we can keep on topic. We can discuss later. I promise. For now; If you had to fill out a short diary about your cluster activity, over the previous 24 hours, every day, for a couple of months, would you prefer to complete it every day between: A. 7:00-9:00am B. 12:00-2:00pm C: 6:00-8:00pm Thank you all and please share with your friends and enemies alike ;-) . Bob Wold
  10. Just wanted to stop in to wish everyone here a Very Happy New Year. I am working on a year-in-review and a look ahead post and will post it here first as soon as it's complete. There is a lot to report and some incredibly important work that will take place in the year ahead. I want to thank everyone here as this group is responsible for most of the progress we've made and are also responsible for thousands of people with cluster headaches being able to treat their clusters better and safer than the last 400 years of the medical science community has offered. This groups support, research & willingness to be open and honest about what is best for people on a human level. Putting people's health and happiness above all else and at many times their own lives and personal freedoms at risk. Many of you have been with me and Clusterbusters since the first day we started with the old yahoo private group and many others also for years. I hope you are all as proud of yourselves and your work as I am of all of you, Honestly, many people go thru life causing more damage then good. Most people go thru life hoping to have some positive impact on their families and others they may love, Hoping that will also "trickle down" to others. People here go on the line to make life changing improvements in the lives of people they will never meet, I'm happy to go into battle with all of you as we try to change history in a positive way, just a little. It's not going to be easy but stick around as we blow the lid off of this damnable condition. Peace & Love Bob Wold
  11. Psiloscribe

    A great 2014 and an even better 2015

    Thank you all again. Here is to a kick ass 2015 !!! You heard it all here first. ;-) Clusterbusters The Year in Review and a Look Forward 2014 was a year during which we made great strides in our missions to bring awareness, educate sufferers & the medical community as well as various political agencies that can help us bring about improved treatments and understanding of cluster headaches. The research projects that we have been working on for years all made giant leaps forward and we find ourselves on the cusp of major breakthroughs. All of the following advancements and success stories are a tribute to all the people that have supported Clusterbusters, not only this year but those that have been working hard since 2002. I want to thank all of those that have stood tall and remained dedicated to doing everything they can for one purpose only, helping others. Advocacy & Education: These objectives are worked upon every day of the year by many people. Social media and our ability to reach out to others that suffer has continued to grow and we have been able to reach out to many people that had thought for years that they were fighting their battles alone. Message Board: A lot of research and education takes place on our message board http://clusterbusters.clusterheadaches.com/ as well as discussions on various treatments. We will be making some sweeping changes and updates on the board this year and it will be even more beneficial to all of our members there. Headache on the Hill The first large scale advocacy effort of the year was our attendance at Headache on the Hill in Washington DC in February. Our work with the Alliance for Headache Disorder Advocacy continued to build upon our previous work in DC and although frustrating at times, our steadfast work is showing signs of making large strides for people suffering with all forms of headache disorders. Our determination has always been to knock on as many doors as possible and keep knocking until we are heard is paying the dividends. The numbers of cluster advocates that come together in DC each year continues to grow and the government officials that are in positions to help us know that not only are we not going away, but our voice is getting larger and louder. We have made some headway in our fight for oxygen coverage from the SSA and continue that fight. The fact that these discussions continue and have not been flatly denied as had been the case in the past is a testament to the extraordinary group of advocates that is involved. Working with the top professionals in the medical field, politicians that have stepped up and have joined us and all the individual patient advocates are being listened to more than ever in the past. We have many issues that we will continue to advocate for this year and appreciate anyone that wants to join us in this fight. This yearÂ’s Headache on the Hill event is April 22nd-23rd and we will be updating everyone on how to take part in this event shortly. Talk with anyone that has attended our event in DC and they will tell you how empowering it is to those attending and how important it is in advocating for all of us. This event offers the opportunity to speak up and make a difference for every cluster sufferer and every family that is touched with headache conditions. Advocacy and Publicity: We have been able to make great improvements in our website and it is the source for important information for all sufferers and keep everyone up to date on our work. Our Social Media footprint has grown and we have been able to reach a much larger audience. Our open source policy on spreading information has been essential in allowing people to learn the facts of what is available to them and let them make up their own minds on what is best for them. We have been able to make several appearances on TV and reach large portions on the general population. There was an international news piece that appeared while we were in DC in February that generated a great deal of publicity and awareness. Through our public relations firm that donates all their time and energy to us and a lot of individuals making contacts, weÂ’ve appeared not only on many TV stations but numerous radio broadcasts and many newspaper/website articles this year. There also have been several very successful fundraising efforts and our trip to DC and the conference in Nashville received quite a lot of coverage. All of this additional publicity has helped cluster headaches reach a greater audience and has caused us to handle more inquires than ever before. All of these improvements have helped us get the word out to more levels of the medical community as well as reaching more cluster sufferers. I look forward to all of this adding up to Clusterbusters growing again this year in many ways. We will be looking to add more volunteers and will be hoping for increased donations to help us continue to grow. It is a sign of a healthy organization to continue to grow and have a louder voice 12 years after itÂ’s formation. Thank you to all of those that have helped us grow and continue to help spread awareness and increase our research efforts. Research: 2014 was a banner year in our mission of increased research efforts and positive movement has been seen in many areas. As was discussed in our Nashville conference report, https://clusterbusters.org/report-2014-conference/ We have several projects in the works and all of it adds excitement to our work and shows the medical communities approval of our work, our missions and our determination to move cluster headache research forward. More progress has been made over a larger spectrum of research, than ever before. We are currently, actively involved in more cluster research projects than I believe have ever been underway in history. Our patient registry http://tinyurl.com/n9ou73a will be instrumental in helping all of these projects move forward. Because of the rarity of clusters and the difficulty the medical community has always had in the past with finding enough patients to fill large studies, filling studies has been a problem for research institutions. This is no longer a problem because of the Clusterbuster patient registry. It is also instrumental in making the point that not only are there a lot of us out there, but there are a lot of us that want to help move research forward. Our common voice in demanding to be heard is loud and clear and people are taking notice. EveryoneÂ’s participation in the registry is essential to future research as even if you donÂ’t participate in a study, the demographics and epidemiology data that it provides is very important. As you will see in the research below, we are directly involved in research that will effect everyone with clusters, no matter what treatment you may find effective. Your information is vital to research and will help all cluster sufferers for years to come. Please sign up if you havenÂ’t yet and please share the link if you have. Confidentiality agreements are in place but I will share what I can on our research projects. BOL-148 as we reported at the conference, a new drug development company was looking to move this research forward. There has been a lot of advancement on this and itÂ’s moving forward. This is one of our international efforts and the team is growing and all the pieces are being put into place. Look for 2015 as the year that we make great strides on BOL-148 Psilocybin: This clinical study is being put together and in the process of final approvals. The research institution is in place as is a federal agency that is on board and working with us. The initial funding has been secured and the only thing between us and clinical study of cluster patients and psilocybin is paperwork. We believe we have the team together that will carry this research forward very soon. Genetics: This study is the closest to patient recruitment and we expect to be starting that phase the first quarter of 2015. We are equal partners in this with a renowned institution in Canada and well known headache specialist and one of the worlds leading geneticist. Big Pharma: Clusterbusters hosted a focus group meeting at the 2014 conference in Nashville. Due to the efforts of Clusterbusters and in large part to those people that participated in this focus group, there has been positive movement forward. The progress and direction of this project is based upon cluster headache sufferers telling the industry what we need and what we want in a treatment and not the usual hand me down medication from other disorders. The establishment has heard us and is working with us to research treatments specific to cluster headaches. There is a scheduled meeting this month move this groundbreaking project forward. Medication Use Survey: Followup: This survey and itÂ’s results, which was a collaboration between Clusterbusters and researchers at Yale University, was Presented at the 2014 American Headache Society annual meeting in LA and was the topic of conversation between many of the countries top headache specialists. Our results that looked at everything from prescription medications to psilocybin detailed the true efficacy of many of the medications that are in use for clusters. The percentages of effectiveness that are reported by pharmaceutical companies following their clinical studies do not always carry forward to real life. As we all know, many medications that seem to work in the beginning, fail to offer sustained relief. This study shows some of these discrepancies and will hopefully be helpful in the future as doctors try to find medications that actually help in the long run. As an aside on this presentation at the AHS conference, we were also able to distribute information to many of those in attendance on the proper use of oxygen and the importance of making it available to people with cluster headaches as a first line treatment. This in particular is one of our most important areas of education. Psychological Burden: We have two separate surveys/studies in the works regarding some of the psychological issues that surround cluster headaches. One will be looking at the psychological burden that clusters cause to the sufferers and their families and will eventually be a huge help in explaining the needs of additional studies into PTSD issues and assist us in our negotiations with different government agencies for increased research funding and benefits. Everyone on our patient registry should be getting information on this and how to participate in the near future. 2015 Clusterbuster Conference The 2014 conference in Nashville was another huge success and will be difficult to top but 2015 is already stacking up to be even bigger and better. Our conferences have grown in attendance as well as the line ups of those making presentations being more exciting and informational each year. 2015 will be the biggest and best yet and will be held in Chicago on the weekend of September 17th thru the 20th. Information on hotels and registration will become available after our trip to DC for the headache on the Hill event. These dates are set though so you can start making plans. You can expect a great list of presentations, updates on all the clinical studies and meeting a wonderful group of friends and cluster family members. In Closing; We all look forward to a year of great progress for all cluster sufferers and their families as we work together with other organizations such as the AHS, AHMA & AHDA and all their associated organizations. We are working with many of the best research institutions and researchers in the US, Canada and Europe and making an impact on the international medical community. I want to thank the Clusterbuster Board of Directors as well as the dozens of volunteers that have put so many hours into building our successful and effective organization. Due to the hard work and dedication of so many, I expect 2015 to be a year filled with progress, growth and improved treatments and lives of cluster sufferers and their families, internationally. Bob Wold President Clusterbusters
  12. Psiloscribe

    A great 2014 and an even better 2015

    Thank you all very much. WE have done a lot of good work. The results of our work is it's own reward. Bob
  13. Psiloscribe

    Ralphsters

    I am trying to get an update on Ralph but haven't heard back. He has the "C" other than Clusters what I did hear was not good. As I said earlier, he has helped hundreds of cluster people and never wanted any acknowledgement for what he has done for years. His only reward was coming to the conferences and meeting people that inspired him to do more. he knew that a lot of people are hesitant to order spores online and he did what he could to get them to people that might not have ever ordered them. Our community is full of heroes and he has certainly been that. Will keep everyone updated if I hear anything. Thank you, for him, for your kind words and healing thoughts. Bob
  14. Psiloscribe

    Patient Registry

    Patient Registry As announced at our conference in September, we have several clinical studies in the works. Some of which will most likely be asking for study participants within the next 9 to 18 months. These studies involve genetics, psilocybin, BOL and a couple others including one involving the psychological burden of cluster headaches. Anyone wishing to participate in these studies must be registered in our Patient Registry. Some of these clinical trials will have study sites outside the United States as well as within the US. This is an international registry and we are looking for people from every country to sign up. A couple of these studies in particular will be looking specifically for people living in the UK, Germany and Canada. Please share this information with anyone you may know residing in these countries. Please share so everyone, no matter where they live, has an opportunity to participate in these studies and play an active role in finding better treatments for cluster heaaches. To register, please go to this link: http://tinyurl.com/n9ou73a or http://survey.constantcontact.com/survey/a07e97nw2gdhuaj6cau/a01oyi1jyvcgv/greeting Bob Wold President Clusterbusters 10-21-2014
  15. This is the official poster for the 2014 conference in Nashville. There will be large glossy posters available in Nashville very soon if anyone in the area wants to take a few and pass out at your local headache clinics and doctors offices. Send me a message if you'd like to pass a few out. You can also print this version up and mail or deliver to your local offices. Bob
  16. Psiloscribe

    New devise at OSU to treat clusters.

    I met with the company doing the studies and took a look at the device. They will be at our conference in Nashville. Bob
  17. Psiloscribe

    Patient Registry

    Thanks to everyone filling out the questionnaire. Even if you wouldn't ever want to take part in any study or survey, it will help us if everyone fills it out. It will give us important information on where we are located generally, where our reach has expanded to, basic numbers on gender etc. This will also always be open and building and I would especially like all of our long time members to get listed on this important registry. Don't worry, none of the info will never be shared with anyone outside of a medical setting. You won't be getting emails selling you toothpaste ;-) Also, if anyone is concerned about completing it and having an IP number associated with your submission, you can print it out and mail it to us and we will enter the information. You can also do the same with anyone you know that isn't online. You can also print up the information and bring it to your doctors and ask them to share it with any of their other cluster patients. Thanks to everyone for your loyalty, the help you have been to others in this group and the help you have all been to Clusterbusters. We have come a long way and have a lot of great adventures ahead. Everyone that has helped keep this board active and helpful to others has made a difference in others lives. I can attest to the fact that besides the people you see helped here, there are a LOT of "lurkers" that are also helped every day here. Clusterbusters P.O. Box 574 Lombard, Il 60148
  18. 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
  19. Psiloscribe

    Neurology Reviews

    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.
  20. Psiloscribe

    Jacob

    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
  21. Psiloscribe

    Jacob

    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
  22. Psiloscribe

    Call to Action

    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.
  23. Psiloscribe

    Where is the Clusterbusters method in the website?

    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
  24. Psiloscribe

    HOH

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

    2014 Headache on the Hill

    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
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