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Psiloscribe

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Everything posted by Psiloscribe

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. Psiloscribe

    Phone interview

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

    Phone interview

    Yes, thank you. I will send you the info in a PM. Much appreciated. Bob
  15. 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 .
  16. 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
  17. 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
  18. 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
  19. For all you Amazon shoppers out there...and I know you are out there.... They have a program where you can designate s small percentage of your purchase to be sent to your favorite non-profit organization. Clusterbusters is registered and would appreciate it if you would take a percentage of Amazon's millions billions and have them donate to our cause. A direct link to start shopping and donating: http://smile.amazon.com/ch/43-2081926 Thanks very much, Bob Wold
  20. Psiloscribe

    2015 Clusterbuster Conference

    Our Clusterbuster conference is only a couple weeks away!! For those of you that aren't going but would like to say hello to the group, you have a chance. Some of you have already sent us your videos but would like more and let more people participate. We're looking for a short (under a minute is fine) hello. Content is up to you but we're looking for you to say hello, your name, where you're from (Country, state, city ??) if you have clusters or are a supporter, and just a little hello message. Maybe your whole family wants to say HI. If you just want to use your screen name, that's fine. Maybe both names ;-) Your standard "vine" video is fine or a little longer is great. You can be funny or serious, before or after you've had your coffee. We'd love to show the international group that we are, and see how many countries can be represented. Say hello in Hungarian if you'd like. Especially if you are from Hungary We'll be showing the videos during breaks and lunch and possibly at the President's Reception. Everyone that sends one in can get a Clusterbusters wrist band and we will draw some names to get a conference tee-shirt. Send them in to us at: conference@clusterbusters.org Include your mailing address if you want a wrist band/shirt. Try to keep them "cluster" family friendly. Please don't post them here before the conference. Let's keep them a surprise to those attending. We may make the entire loop of them available on our You Tube channel after the conference (unless you want yours out of the loop) If you don't know how to shoot and send a video, find a teenager with a phone, have them take a short video and have them email it to you. Then forward it to us We'd love to see you at the conference!!! Bob
  21. This thread is for people with questions on the hotels and/or if people want to start chatting about possibly sharing rooms. We will post updated information on the hotels as it comes in, on this thread. Please keep discussion here to just lodging questions and inquiries. Won't be long now!!! Bob
  22. Hello Everyone, As some of you may know from our conference last year, Clusterbusters has been in close dialogue with Eli Lilly and Company regarding the following release. Among our priorities, has been to provide them with what we felt was important input from the patient community. We are very pleased to be involved in this and will be providing additional information to our membership as it becomes available. Eli Lilly and Company has informed Clusterbusters that the company plans to start a research program for episodic and chronic cluster headache. Lilly is excited to start this program and work with Clusterbusters to actively help enroll patients. The company will provide more information, including the locations of participating study sites, to Clusterbusters and on the web at www.clinicaltrials.gov (expected in late March). Lilly expects the program to begin actively enrolling in late April. At this time, please do not make any changes to your current medical treatment or otherwise to try to qualify for this study. HereÂ’s some additional information about Lilly from the companyÂ’s website: Lilly is a global healthcare leader that unites caring with discovery to make life better for people around the world. We were founded more than a century ago by a man committed to creating high-quality medicines that meet real needs, and today we remain true to that mission in all our work. Across the globe, Lilly employees work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease, and give back to communities through philanthropy and volunteerism. To learn more about Lilly, please visit us at www.lilly.com and http://newsroom.lilly.com/social-channels Bob
  23. Psiloscribe

    Patient Registry

    Sorry I'm just getting to this Hoss. We do not have a confirming email on the registry. If it had not gone through you would have been notified. If you'd like to PM me your name, I can check to make sure for you. You may have already received an email regarding ongoing studies by now. Thank you very much for taking the time to register. The registry has been very helpful already in helping move research and clinical studies forward. Bob
  24. Psiloscribe

    My literary contribution

    Yes Moxie, I like it a lot. I may print it up or display it at the conference in some way if you don't mind. Let me know how'd you'd like me to attribute you as the author if it's ok with you. You can do that in PM or here, whatever you'd like. Bob
  25. I've opened up this separate thread so people that are coming to the conference can discuss transportation once you get here and maybe share some rides. Please just post in this thread about transportation so people looking for rides don't get lost in other discussion topics. Please don't hijack the thread. Go ahead and post your arrival times and which airport and maybe people can share a cab or meet to share the same shuttle. People coming into Midway will have a trip to get up to the hotel. If we can bunch up a few people we might be able to help find a ride or you can discuss meeting to share a cab or travel together on mass transit, for those that are comfortable hoping on a train and making some connections. Once you get up to O'Hare (if you take mass transit) you can then catch the free shuttle to the Hyatt or Comfort Inn. This link provides some info on mass transit. http://www.transitchicago.com/airports/ See you all soon, Bob
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