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Psiloscribe

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Everything posted by Psiloscribe

  1. Psiloscribe

    Patient Registry

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

    Open letter to major chemical companies (BOL-148)

    Hello Jack, I will answer in email so we can discuss the situation and moving it forward. To let everyone else in on what is currently happening, yes BOL-148 is again in the pipeline. What I learned long ago is that these pipelines run very slowly. It took psilocybin 17 years to get into a clinical trial. As someone stated above regarding the report at our last conference, the patents are now in the hands of a new drug development company and negotiations are underway getting study approvals and FDA requirements on the steps they will require. (You can't just go to phase 3 clinical studies). Hope to have a better report on the status of BOL-148 at our conference coming up in Dallas in a few weeks. Bob Wold
  3. Psiloscribe

    Emgality for episodic

    It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters.
  4. 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
  5. Psiloscribe

    Teva Scraps Chronic Cluster Headache Study

    Yes this was some disappointing news. The article is a year old and since then they have also stopped the study with episodics. Personally I believe that part of the issue was that they didn't learn about clusters or cluster patients nearly as well as Eli Lilly did and didn't design their study properly. They never engaged the cluster community. Bob
  6. Psiloscribe

    Patient Registry

    Thank you all for keeping an eye on things. Bob
  7. Psiloscribe

    Gammacore/electrocore

    Just a few comments on the gammaCore device. As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost. The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery. So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching. The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%. It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community. Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community. When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down. Peace out~ Hope everyone has a great 2019 Bob
  8. Psiloscribe

    Focus Group?

    Hello all, I hope you're all having a great holiday season. I am looking for several people that are interested in taking part in a focus group regarding cluster headaches. Specifically we're needing people that have been diagnosed within the last 5 years. Even if you've had clusters for longer, the diagnosis should have been in the last 5 years. I know many of us go years before proper diagnosis. This is one of the issues that will be discussed. Participation will require attending a couple of long conference calls (3-4 hours long) FYI: This project is being sponsored by Eli Lilly who is coming out soon with a new medication that will hopefully be helping a lot of people soon. We are looking for a mix of episodics/chronics, male/female If you might be interested, send me a message here or write an email to me at bob@clusterbusters.org and I can give you more information. Thanks again, Merry Christmas and Happy New Year! Bob Wold
  9. Psiloscribe

    Lilly & CGRP

    Here is some pretty big news. https://investor.lilly.com/news-releases/news-release-details/lillys-galcanezumab-meets-primary-endpoint-phase-3-study Cluster Headache Lilly's Galcanezumab Meets Primary Endpoint in Phase 3 Study Evaluating Galcanezumab for the Prevention of Episodic Cluster Headache 05/15/2018 INDIANAPOLIS, May 15, 2018 /PRNewswire/ -- Eli Lilly and Company (NYSE: LLY) announced today that galcanezumab met its primary endpoint in a Phase 3 study of patients with episodic cluster headache, demonstrating statistically significant differences in the reduction of weekly cluster headache attacks compared to placebo across weeks one to three of the two-month, double-blind treatment period. A statistically significantly greater percentage of patients treated with galcanezumab also achieved at least a 50 percent reduction in weekly cluster headache attacks compared to placebo at Week 3, the gated secondary endpoint. My statement: "It is hard to articulate the devastating impact that cluster headache can have on those of us living with the disease. Many people living with cluster headache spend years searching for effective treatment options to help ease an excruciating level of pain," said Bob Wold, a patient living with cluster headache and founder of Clusterbusters, Inc. "We are very excited by these results and galcanezumab's potential as a new treatment option for people living with cluster headache, many of whom have spent years feeling ignored and alone in their struggle."
  10. If you are thinking about attending the Clusterbuster Cluster Headache Conference in Denver, you only have a couple weeks before it gets underway. https://clusterbusters.org/event/13th-annual-clusterbusters-patient-conference/
  11. Psiloscribe

    Trying to stay positive

    FunTimes, That's a good answer Jon. I think we've all been there. It's more difficult for some and the range of difficulty changes for all of us as we move forward through life. It seems like when you get down, everything and everyone reminds us of why we're down or why things are going bad. When you're up and see a mountain, you see the beauty of it and when you're down, you remember when you were feeling good enough to climb it an can't any more. I think you need to find something that does bring you some joy and try to find ways of remembering that when you need it most. I used to put a little red avery sticker on my watch (when I wore a watch) to remind me to stop and breathe for a minute. Every time I looked at my watch, which was usually because I was running late and adding stress, it would remind me to stop for a minute. LOL, now I'm wondering if I stopped wearing a watch because I didn't have time for it any more LOL. Hang in there FunTimes, you'll have those times again. Bob
  12. Psiloscribe

    Aimovig (erenumab)

    Aimovig has just been approved for migraines so far. It was only tested on migraine patients. The "equivalent" CGRP being studied by Eli Lilly reported pretty good results in their study for episodic clusters. It didn't meet the success goals for chronics although that doesn't mean it can't help people with clusters. It may be more difficult to get your insurance company to cover it for chronic clusters. If you can get your doctor to write a prescription and go thru the Amgen/Novartis program to get the free injections, I think its a great opportunity. We'll see what type of programs Lilly comes up with once their medication is available. There is a lot of negotiating still to take place as far as insurance companies approving or not, discount programs offered by each manufacturer and pricing. https://investor.lilly.com/news-releases/news-release-details/lillys-galcanezumab-meets-primary-endpoint-phase-3-study The initial pricing set by Amgen is pretty damn reasonable if you ask people involved in this sort of thing. The original pricing schedules looked like they might fall into the 10,000 - 15,000.00 per year range. As Denny quoted, its set at $6900.00 a year. If you compare that to what many of the other migraine/cluster meds cost, and how many this one treatment may be able to eliminate, (DHE nasal spray was retailing between $3300.00 and $5000.00 A MONTH) the insurance companies can actually save a bundle of money and more importantly, these meds can eliminate a lot of pain and suffering. It took a lot of patient advocacy to get the pricing down to where it ended up. This pricing should keep the CGRPs off the highest tiers on insurance formularies. This will make it much easier to get approved. The safety panel so far looks very good. Thousands of people have been on these meds for quite a while and the most often reported side effect was injection site soreness. BUT, it will take a lot more data retrieval over several years to make sure there are no long term effects. There hasn't been any testing yet regarding pregnancy and CGRPs so its recommended that women that are pregnant or thinking of becoming pregnant should not use the CGRPs at this time.
  13. Psiloscribe

    Lilly & CGRP

    Sorry, I'd edit the formatting but can't seem to be able to do that.
  14. Psiloscribe

    Doctor-Patient Relationships

    Clusterbusters could use some input on an important topic. This is with regard to doctor-patient relationships. Most of us have had a lot of these over the years. I'd like a concise answer to the following questions. 10-12 words or less please. Meaning, get to the point ;-) 1. What is the most important factor to you for a good doctor-patient relationship? i.e. Must have lolli-pops in waiting room. or Understands the science behind cluster headaches. or ? 2. Why did you leave your last doctor, looking for someone new, based upon this relationship? (not because of insurance, etc) i.e. Ran out of lolli-pops. or Would not work with me. or ? We will be doing a more detailed and formal survey as a follow up but this initial data will help us with an upcoming event as well as helping to design the next survey. P.S. This is important for the community. Thanks, Bob
  15. This is our group photo. A conference report will follow soon. Please feel free to give us your personal review of your experience if you attended. We'd love to know about your experience.
  16. Psiloscribe

    Intensity of CH pain

    Bob
  17. 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
  18. Great to see you back jeebs Its good to keep family together. Regards, Bob
  19. 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™.
  20. 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.
  21. Psiloscribe

    2017 Clusterbusters Conference

    I think you should just send your wife instead. I have some stories I'd like to tell her ;-) Bob
  22. 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.
  23. 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
  24. 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
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