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Everything posted by Psiloscribe

  1. 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, i
  2. 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
  3. 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
  4. 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 As
  5. 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
  6. 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
  7. 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
  8. 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 th
  9. Psiloscribe


    Please check out our report on Headache on the Hill in the Advocacy / Events forum. Good things happening, Bob
  10. 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 t
  11. 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 Port
  12. 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
  13. No Corporate funding for research at this time. Red Bull has been approached several times and they are not interested at all. Bob
  14. Anyone near the Lancaster/York PA area? Want to be on TV? Let me know, Bob
  15. 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,
  16. 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 importan
  17. 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
  18. 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 f
  19. 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
  20. 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
  21. 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 ;-)
  22. 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
  23. 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 SewellÂ’s passing. Â Â 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
  24. 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
  25. 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
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