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Psiloscribe

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Everything posted by Psiloscribe

  1. Great to see you back jeebs Its good to keep family together. Regards, Bob
  2. Psiloscribe

    Study Closing_ Last Chance

    Last Chance! One week to go before this study closes. This study which will be the largest study of cluster headache ever conducted and it's resulting data will be useful in future studies, advocacy and awareness for years to come. Please take part if you haven't already and be part of history. This study closes on April 20th 2017. Cluster Headache Questionnaire: A New International Study Clusterbusters® is pleased to announce the final collection days of a very important research study: Study Title: Cluster Headache: Investigating severity of pain, suicidality, personal burden, access to effective treatment, and demographics among a large International survey sample. We are seeking respondents in the US and worldwide as our survey is translated into 10 languages. If you have been diagnosed with Cluster Headaches and are at least 18 years old, you are cordially invited to complete this important survey. This study will provide important research data and help advance future research and advocacy. Despite numerous descriptions in the literature suggesting Cluster Headache is among the most painful medical conditions, it has been difficult to measure and describe with precision the severity of the pain that occurs during an attack. Our study focuses on the following questions: Severity of pain Prevalence, severity, risk factors, and protective factors of suicide Personal burden (impact on relationships, work, and daily living) Effectiveness of treatment as well as obstacles Psychological impact To access our survey please visit the following link: www.clusterheadache.center This study is a collaboration between Clusterbusters® and Larry Schor, PhD Professor of Psychology at the University of West Georgia with additional support to the University of West Georgia generously provided by Autonomic Technologies™.
  3. Psiloscribe

    Psychedelic Science 2017

    Clusterbusters is very happy to announce that we will be attending this exciting and important conference. We will be exhibiting at a booth and networking with all of the top researchers that will be attending and presenting at this conference. Attendance is expected to be between 1500 and 2000 people from around the world. http://psychedelicscience.org/conference Also, Dr. Emmanuelle Schindler will be making the presentation: Indoleamine Hallucinogens in the Treatment of Cluster Headache. Dr. Schindler is currently recruiting patients into a Cluster Headache clinical study using psilocybin at Yale University and in conjunction with the Veterans Administration. The joining of our two communities and mutual support began back in 2002 and we have both been very important in helping each other work toward the goals of helping people find relief from the many various conditions that this spectrum of entheogens successfully treat and both are committed to improving the lives of millions of people, worldwide. If you have the time to join us, I feel this conference can not only be instructive but also build confidence in the future after listening to and meeting the impressive list of doctors and researchers working on your behalf to find safe, effective and life-saving treatments. Anyone that might like to spend some time working in our booth, please send me an email or message. With over 50 speakers, three full days of workshops & exhibitions, Psychedelic Science 2017 will be a celebration of what has so far been achieved, and a comprehensive look at what lies ahead. Check out the full schedule and a psychedelic research timeline. Early bird tickets for Psychedelic Science 2017 are on sale until Sunday 15 February.
  4. Psiloscribe

    2017 Clusterbusters Conference

    I think you should just send your wife instead. I have some stories I'd like to tell her ;-) Bob
  5. Psiloscribe

    Headache on the Hill

    Headache on the Hill (HOH) is just a few months away! This is our annual opportunity to join together as a community and take our united voice to DC to tell our legislators about our needs. There is still so much to be accomplished and we need your help. The patient voice is an important one and we would like representatives from every state to participate. The states we still need participants from include: AK, AL, FL, GA, IA, ID, IN, KY, LA, MN, MO, MS, MT, ND, NH, NM, NV, OK, RI, SD, TN, TX, WI, WV, WY If your state isn't listed above, we'd still love to see you there. We are working on the details of our "asks" and with the ever changing climate in Washington DC, the asks may not be completed until very close to our travel. We therefore hope that you will join us for the 10th annual HOH event, which will take place on the afternoon of Monday, Feb 13th and all day Tuesday, Feb 14th, 2017. The 2017 HOH application process is now open: https://goo.gl/forms/YlJpt7y5yqsBoyxu2 Please carefully review the details of dates, location, costs, and cancellation policy. Key Dates: Dec 15th - Final day that applications will be accepted Dec 23rd - Applicants will be notified about their status for participation Jan 12th - Participants will receive hotel confirmation information Feb 11th - Final date for cancellation without penalty Feb 13th - HOH - Advocacy training / Issues briefing Feb 14th - HOH - Capitol Hill meetings For any questions, contact Katie MacDonald at katiemacdonaldster@gmail.com. We really hope to see you in DC in February for another successful HOH event on behalf of Americans with cluster headaches and other disabling headache disorders. We are working with the AHDA and AHMA to offer scholarships. If you are from a state listed above, preference may be given to you for scholarship requests. Your hotel room costs will be covered for up to two nights stay. If you will require a 3rd night stay, contact Clusterbusters after confirmation that you have been selected to attend. Clusterbusters will have limited funds to award some travel scholarships but we won't know the amount available until we know how many rooms we are covering. More information regarding that will be available very soon. We will write everyone that has applied with the AHDA at the above link. Please consider applying even if you aren't sure if you can make it due to finances as there is a deadline to apply approaching quickly. If you cannot make it you can cancel, but please make sure you do cancel so you do not face the penalty for cancellation.
  6. In 2002, Clusterbusters was formed to take a pro-active role in researching for a cure for cluster headaches and find new and improved treatments. Eventually, 6 advocates traveled to Boston and met with the administration of Harvard Medical School and convinced them of the importance of this research and they agreed to undertake the first psychedelic research project at their institution in 40 years. On Feb 9th, 2004, an agreement was signed to begin research at Harvard University, looking at using psilocybin as a viable treatment option providing results far better than anything currently available. The first published results from this groundbreaking clinical study of this treatment appeared in the prestigious medical journal Neurology in June of 2006. This has been an incredibly long and often frustrating process that included the discovery of BOL-148, starts and stops of every fashion, thousands of people finding relief with various new options and an unending determination to push forward past every obstacle. The growth of Clusterbusters into an active and successful advocacy group for the entire community, built with contributions from hundreds of people that refused to let the words “can’t”, or “no” stop them from helping others. Along the way we have added some incredibly dedicated advocates, we have lost one of our original research team members, Dr. Andrew Sewell, added extraordinary researchers and headache specialists to our team, overcome those that have tried to stop us and will continue to push forward. Yes, it has taken 14 years but I am both proud and pleased to announce the following: ________________________________________________________________________________________________________________________________ VOLUNTEERS NEEDED Adults with chronic cluster headache, age 21 - 65, needed for a research study investigating Psilocybin in the treatment of cluster headache. ClusterBusters, a non-profit advocacy and education group, is participating in the recruitment of subjects for a pilot study investigating the safety and efficacy of psilocybin in cluster headache. This study is taking place at the Veterans Affairs Hospital in West Haven, Connecticut, an affiliate of Yale University School of Medicine. Earn $100 per test day. Three test days total. Call (203) 932-5711, ext. 4335 All calls are confidential HIC # 1607018057, HSS # DD0063 Biological Studies Unit, VA Connecticut Healthcare System, West Haven Campus _______________________________________________________________________________________________________________________________ A few details of explanation: 1. This study will require at least 4 visits to the study site, with time between visits which will require needing to be in the area for a while. 2. Please call during regular business hours (9:00am-4:00pm EST) if possible. 3. Participants will need to be physician-verified chronic cluster headache sufferers. Congratulations and thank you to everyone that has worked so hard for all these years to make this happen. Bob Wold Clusterbusters
  7. Thanks to everyone that took part on Dr. Rayhill's research project at the conference. http://www.medpagetoday.com/clinical-context/migraines/60864 Bob Wold
  8. Thanks to everyone that took part on Dr. Rayhill's research project at the conference. http://www.medpagetoday.com/clinical-context/migraines/60864 Bob Wold
  9. Psiloscribe

    Pre-planned Legal fight ?

    Just a follow up on the post above regarding a neurologist being jailed. After further investigation,,,,,,,nevermind. ;-) ​I may pull the post later on but wanted everyone to know that it appears that there is no connection to psychedelics. That is all. ;-) ​Bob
  10. Psiloscribe

    Pre-planned Legal fight ?

    This topic has been discussed for 15 years. It may have been more helpful 15 years ago but we are at the point now that it would not help and could hurt. Most of the reasons have been noted. One note, jury nullification is nice if you can get it. The problem is with federal law, you can not use any evidence for defense that explains WHY you did it. If people could, there would be a LOT more jury nullification. In some cases, even if I was on the stand defending myself and I mentioned I had cluster headaches, the prosecutor could ask for a mistrial. This is why people used to get life sentences for stealing a loaf of bread to feed their starving children. In some jurisdictions, the price of a loaf of bread can put you into felony range and you'd be charged with grand theft. (just a sad side note to explain the slippery slope of American justice) We will be opening a psilocybin study for clusters very soon. Weeks, months? days? Very soon. We've come a long way and are really at the point that the progress we've made could be harmed and publicity of this sort now wouldn't move the needle to far forward. There are many other reasons its not a good idea and I hope we never have to defend someone. As to the previous post regarding someone in jail now, I'm very surprised to hear of this and even more that the first I would hear of it in 3rd hand in the message board. ​ Can you Zgreek, either have this friend of yours contact me or get me some contact info. She can write to me at bob@clusterbusters.org Bob Wold
  11. I'd like people that attended this years conference in Austin, to post their reviews here. You can post a picture or two if you'd like but I'd prefer that most posts here are of testimonials of your experience. We will have another thread for everyone to share their pictures and CB will post our full set in a thread of it's own. ​Here is my first testimonial and I will do a set of featured speakers and VIP's that made the event as successful as it was. Eileen Brewer ... I want to start out with the most important person in making the event as successful as it was. It is always our goal to provide the venue for what is always the most important part of our conferences, to allow the people attending to be the stars and the most important part of the event. Eileen’s dedication to Clusterbusters goals and to the individuals that make the event as important as it is to people, and her contributions, cannot be overstated. Many people that were there had contact with Eileen Brewer prior to the event and everyone in the community, whether you were there or not, should be made aware of Eileen’s involvement in making this an incredible event for everyone. Eileen, the event coordinator, began working on this year’s event back in January and has been putting in literally thousands of hours of work on this project. It is certainly a full time, part time job, and all on a volunteer basis. From helping select the event location to coordinating every aspect of the event. Negotiations with the hotel, finding the best location when problems arose with the other options for where to hold the event. Eileen was instrumental in scheduling all the speakers, determining meals and breaks and conference room selections and details, involved in putting together the printed materials and dealing with all the suppliers. There is no one more responsible for setting the stage for people’s lives to be enriched and changed, than Eileen Brewer. Please join me in thanking her (conference@clusterbusters.org) for all of her hard work and her determination to make the event something special for all in attendance. As we all know that clusters effect the entire family, so to does the volunteer work of those working with us. Thanks are owed to not only Eileen but to her family, Dan, Sammy and Max for sharing her time and talents with us. Bob Wold
  12. Psiloscribe

    RegisterYourJourney app Published

    I checked out your website, but I'd like a little more info from you. I'd like some info on who exactly is doing this before we allow too much advertising of it here. ​Looks good but....who are you? ​Please snd me an email at bob@clusterbusters.org Thanks Bob
  13. Psiloscribe

    Survey help - FDA

    As some of you know, rather than flying home from the conference, I took a side trip to visit with the FDA regarding the current state of available treatments for cluster headaches. Myself and a couple of headache specialists and others had the task of convincing the FDA that we are not content with 2 level A acute treatments, oxygen and Imitrex, and 1 level C preventive, verapamil, according to the AAN's recent analysis. They were under the impression that we had all the options we needed. I made the point that as long as one of the options remains suicide, we are not content. I need your help. I am preparing my written response as a follow up to the meeting and the discussions will continue. Please take a few minutes to answer the survey at the following link. Of course answer all questions honestly and truthfully. Just taking note of questions #3 and #7 will explain the importance of gathering this data and relaying it to the FDA. Its only 11 questions and should only take a few minutes. I need to get my response to them rather quickly so please don't wait too long. https://www.surveymonkey.com/r/Clusterbusters Thanks much, Bob & Clusterbusters
  14. Hello to everyone thinking about attending the conference in Austin. There are some people that will only be able to attend if they can find a partner to share a room with during the conference. If you are looking to share a room to help with expenses, or are willing to share your room with someone in need, please use this thread to make arrangements. If you're interested, I would suggest posting an email address along with your posting so that you can discuss details and chat about it in email. Looking forward to seeing everyone Bob
  15. Psiloscribe

    Spousal support?

    Anita, First off, thank you for your support for your husband. Just knowing that you'll still be there after the attack and after the cycle are over, is the most important thing we can ask of any supporter. Helping with the research so that he can always be aware of things happening that give him some hope is huge. We often don't want to hear any thing at all and we can shut down. It helps to know that others are working on solutions. ​As to what the hospital offered, benadryl and valium are pretty useless. The valium probably would have helped you more than him. When going onto ERs cluster people are often told to "relax and calm down" and the doctor will see you soon. I guess we seem a little on edge to people not knowing what we're going through. The Benadryl at least has some research behind it's use. Some people with clusters use it to help get through those night time attacks. It can help people sleep. Clusters were at one point known as "histamine headaches" and some cluster centers treat people with an IV Histamine treatment. Histamine levels do increase during attacks. Researchers aren't sure if its a result of the attacks or if it has some triggering effect. The histamine treatment is done over a long period of time and given constantly to try and get the body to desensitize itself to histamine. it does help some people. ​Hence, the Benadryl trick. its given for the anti-histamine effect. ​all the best, Bob Wold
  16. Psiloscribe

    Update

    Hello people, Sorry I've been AWOL so much. I wanted to update you on a couple of things. First off, a few people know but not many, that my wife Mary was recently diagnosed with breast cancer. That has kept us busy. She has already had a couple of surgeries and we are now waiting for more lab reports to tell us how we need to proceed. I know some of you know her and have met her at the conferences. The conference is coming together very nicely. Eileen brewer is doing a great job pulling it all together. We will be smashing attendance figures from years past. I hope many of you can make it. I wanted to explain a little about our scholarship process and awards. We had an extraordinarily high request for help getting to Austin this year. Requests well above $20,000.00 in total which is considerably more than we could ever meet. Our goal is always to try to get as many people there as possible and we used the limited funds we had to try to do that. If you applied and were turned down, it had nothing to do with anything other than we just didn't have the funds. I wish we could offer free hotel rooms and transportation to everyone because we know how important these events can be for people. Thanks to everyone here for keeping the board active and helping everyone that arrives. Its an important part of what we do. best, Bob
  17. Psiloscribe

    Update

    Thanks everyone. Lab reports came back with good news and no more surgery and no chemo needed. She'll be starting a course of radiation in a few weeks and then we'll both be seeing everyone at the conference. Thanks again for the thoughts and prayers and well wishes. The cluster family means a lot to both of us. its been almost 20 years on the different generations of this board. Best, Bob
  18. Announcement of New Study Opening New Cluster Headache Questionnaire: An International Study Clusterbusters is pleased to announce the launch of a very important research study: Cluster Headache: Investigating severity of pain, suicidality, personal burden, access to effective treatment, and demographics among a large International survey sample. Study Title: Cluster Headache: Investigating severity of pain, suicidality, personal burden, access to effective treatment, and demographics among a large International survey sample. This study is collaboration between Clusterbusters and Larry Schor, PhD Professor of Psychology at the University of West Georgia. www.clusterheadache.center We are currently contacting individuals who have joined our patient registry or completed a previous Clusterbuster’s survey and have indicated they may be willing to take our online survey. We hope Headache advocacy groups as well as Neurologists, Headache specialists, and clinics will refer people to the survey, which can be accessed at www.clusterheadache.center Because this is an International study, we are seeking Cluster Headache patients worldwide. This is a very important study that will help in several different areas of future research and treatment options for people with clusters. Please participate and pass along to everyone you know with clusters. Drop off the link to your doctor and ask him/her to spread the word among the rest of their cluster patients. For more detailed information, follow the links found on the banner on the Clusterbusters website, homepage. We expect this study to be the largest of its kind ever produced and will provide important data that can be used in our advocacy efforts as well as helping demonstrate the need for additional cluster headache research. Please help us all out and complete the survey when you get some time. Thanks very much, Bob Wold
  19. Psiloscribe

    Phone interview

    Clusterbusters has been contacted by a company doing phone interviews of cluster patients regarding cluster headaches and some questions about a new treatment that will be coming out. They are looking for a couple more people. This is for US citizens only and for people with clusters. If you want to find out some more information and possibly set up an appointment for a call, send me a message here and I will give you their contact info. Bob
  20. Psiloscribe

    Phone interview

    Thanks to those that participated. They have received enough volunteers to fill the program. Bob
  21. Psiloscribe

    Phone interview

    Yes, thank you. I will send you the info in a PM. Much appreciated. Bob
  22. Psiloscribe

    Intrigued and learning... (Sinusitis??)

    As Denny and CHfather have said, your PCP is very misinformed. This is why so many people go so many years going from one bad diagnosis to another. 02 is the safest thing your PCP could have prescribed and Baclofen will not differentiate between TN and CH. Bob .
  23. Psiloscribe

    We're Published again

    Here is a little Christmas/ Holiday gift to everyone that has been working so long at Clusterbusters to move our work forward. Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites. Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisory Board and specifically Dr. Robert Shapiro, and the hard and determined work of both Dr. Douglas Wright and Ms. Marsha Weil. I am posting the abstract but the rest of the 11 page document is covered under copyright regulations. Feel free to copy the following ISSN and online info and pass along to your physicians for discussions on the topic. ;-) This study, it’s followed guidelines, results and subsequent publication moves our work a step past anecdotal reports and will be the basis for continued research studies Thank you to everyone that took part in this study, all those that worked tirelessly for the last couple of years, and to all those that have supported our work. Thank you for the work, the support, and the inspiration to keep moving forward. Journal of Psychoactive Drugs, 47 (5), 372–381, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0279-1072 print / 2159-9777 online DOI: 10.1080/02791072.2015.1107664 Indoleamine Hallucinogens in Cluster Headache: Results of the Clusterbusters Medication Use Survey Emmanuelle A. D. Schindler, M.D., Ph.D.a; Christopher H. Gottschalk, M.D.a; Marsha J. Weilb; Robert E. Shapiro, M.D.c; Douglas A. Wright, D.C.b & Richard Andrew Sewell, M.D.d Abstract—Cluster headache is one of the most debilitating pain syndromes. A significant number of patients are refractory to conventional therapies. The Clusterbusters.org medication use survey sought to characterize the effects of both conventional and alternative medications used in cluster headache. Participants were recruited from cluster headache websites and headache clinics. The final analysis included responses from 496 participants. The survey was modeled after previously published surveys and was available online. Most responses were chosen from a list, though others were free-texted. Conventional abortive and preventative medications were identified and their efficacies agreed with those previously published. The indoleamine hallucinogens, psilocybin, lysergic acid diethylamide, and lysergic acid amide, were comparable to or more efficacious than most conventional medications. These agents were also perceived to shorten/abort a cluster period and bring chronic cluster headache into remission more so than conventional medications. Furthermore, infrequent and non-hallucinogenic doses were reported to be efficacious. Findings provide additional evidence that several indoleamine hallucinogens are rated as effective in treating cluster headache. These data reinforce the need for further investigation of the effects of these and related compounds in cluster headache under experimentally controlled settings. The full article can be accessed here: http://www.tandfonline.com/doi/full/10.1080/02791072.2015.1107664 Happy Holidays everyone!! Bob
  24. 10th Annual Cluster Headache Conference 2015 Chicago, Illinois Clusterbusters is pleased to announce the dates and venue for the 2015 Conference. Dates:        Thursday September 17, 2015 to Sunday September 20, 2015 Location:    The Hyatt Regency O’Hare  9300 Bryn Mawr Ave, Rosemont, IL 60018 This is one conference you will not want to miss! This conference offers an opportunity for understanding and camaraderie that attendees have greatly appreciated in the past. There will also be updates and reports on advocacy efforts, education, and the latest information on current research. Rooms and Rates: We have arranged a block of rooms starting at $125 per night.  Make your reservations online at: [ftp]https://resweb.passkey.com/go/cbannual15[/ftp]  You WILL want to make your reservations early. Registration: For Online Conference Registration follow this link: Coming Soon. We have been able to keep the Registration Fee the same at $125 for attendees and $95 for spouse/companions. Schedule of Events: The 10th Annual Conference will start with Registration and the President’s Reception at 6pm on Thursday Sept 17, 2015. The speakers and presentations will follow beginning at 9am on Friday and continue to Saturday at 5pm. Sunday is left open for socializing and final goodbyes. We are still working on the agenda, a compete list of speakers, and more. These will be announced shortly. A few of the speakers already confirmed are: Dr. Brian McGeeney Dr. Robert Shapiro Dr. Larry Schor A lot more details to come very soon. Hope to see a lot of you in Chicago! Bob
  25. Psiloscribe

    Christmas Present

    This is also being posted in the Research section so it can be more easily located in the future. Here is a little Christmas/ Holiday gift to everyone that has been working so long at Clusterbusters to move our work forward. Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites. Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisory Board and specifically Dr. Robert Shapiro, and the hard and determined work of both Dr. Douglas Wright and Ms. Marsha Weil. I am posting the abstract but the rest of the 11 page document is covered under copyright regulations. Feel free to copy the following ISSN and online info and pass along to your physicians for discussions on the topic. ;-) This study, it’s followed guidelines, results and subsequent publication moves our work a step past anecdotal reports and will be the basis for continued research studies Thank you to everyone that took part in this study, all those that worked tirelessly for the last couple of years, and to all those that have supported our work. Thank you for the work, the support, and the inspiration to keep moving forward. Journal of Psychoactive Drugs, 47 (5), 372–381, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0279-1072 print / 2159-9777 online DOI: 10.1080/02791072.2015.1107664 Indoleamine Hallucinogens in Cluster Headache: Results of the Clusterbusters Medication Use Survey Emmanuelle A. D. Schindler, M.D., Ph.D.a; Christopher H. Gottschalk, M.D.a; Marsha J. Weilb; Robert E. Shapiro, M.D.c; Douglas A. Wright, D.C.b & Richard Andrew Sewell, M.D.d Abstract—Cluster headache is one of the most debilitating pain syndromes. A significant number of patients are refractory to conventional therapies. The Clusterbusters.org medication use survey sought to characterize the effects of both conventional and alternative medications used in cluster headache. Participants were recruited from cluster headache websites and headache clinics. The final analysis included responses from 496 participants. The survey was modeled after previously published surveys and was available online. Most responses were chosen from a list, though others were free-texted. Conventional abortive and preventative medications were identified and their efficacies agreed with those previously published. The indoleamine hallucinogens, psilocybin, lysergic acid diethylamide, and lysergic acid amide, were comparable to or more efficacious than most conventional medications. These agents were also perceived to shorten/abort a cluster period and bring chronic cluster headache into remission more so than conventional medications. Furthermore, infrequent and non-hallucinogenic doses were reported to be efficacious. Findings provide additional evidence that several indoleamine hallucinogens are rated as effective in treating cluster headache. These data reinforce the need for further investigation of the effects of these and related compounds in cluster headache under experimentally controlled settings. The full article can be accessed here: http://www.tandfonline.com/doi/full/10.1080/02791072.2015.1107664 Happy Holidays everyone!! Bob
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