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Everything posted by Psiloscribe

  1. Psiloscribe

    Low Histamine diet worked for me!

    Pulling this old topic out of the closet. It's a good topic for discussion. There is plenty of research showing how histamine can play a role in cluster headaches. The Diamond Headache Clinic has for decades used a histamine desensitivevation (sp) program in their in-patient unit. It's a long process but many people have had good results in breaking cycles this way. (as well as plenty of failures along the way) Many of us prior to getting a proper diagnosis rely upon OTC antihistamines that do provide some relief. You end up needing more and more. In todays world, I'd probably be investigated for having a meth lab with all the OTC antihistamines I used for my clusters. ( the first 4 years i had a "sinus infection") Anyway, I was sent this recent article about histamines that I thought someone may find helpful. (Ignore the ads for wine ;-) https://drinkpurewine.com/blogs/histamine-intolerance-side-effects/histamine-intolerance I hope everyone is having a great fall, at least weather-wise if not other areas of life. Hang in there people, Bob
  2. Psiloscribe

    2020 Conference Details please...?

    Yes I will get some info posted here as soon as possible. Good to hear from you Mox, Bob
  3. 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
  4. Psiloscribe

    Anyone need a Zoom Chat?

    During this time of distancing, we'd like to offer more to keep us together. Beginning next week and continuing based on demand, please join us on Zoom for one hour support group discussions moderated by Mr. Bob Wold. You will need to sign up here and we will send you a link. Please do not forget to include your email. https://www.signupgenius.com/go/9040b49a8ac23a4ff2-clusterbusters I know this is a rough time for everyone and it's even tougher for those of us that had serious health issues before the lockdown's made things even harder. There has been a noticeable spike in people talking about giving up and a spike in people entering serious cluster cycles that weren't expected. Some of this may be attributed to this crazy weather. Some may be from the added stress and anxiety of these times we live in. If you have zoom set up (or want to set it up) and want to chat with others with clusters, and see some faces, let's talk. Bob
  5. Good morning, A few days ago, CMS relaxed many regulations for COVID crisis, including one related to oxygen. http://go.cms.gov/3aDAFFq National Coverage Determinations (NCDs) and Local Coverage Determinations (LCDs) on Respiratory Related Devices, Oxygen and Oxygen Equipment, Home Infusion Pumps and Home Anticoagulation Therapy: Clinicians now have maximum flexibility in determining patient needs for respiratory related devices and equipment and the flexibility for more patients to manage their treatments at the home. The current NCDs and LCDs that restrict coverage of these devices and services to patients with certain clinical characteristics do not apply during the public health emergency. For example, Medicare will cover non-invasive ventilators, respiratory assist devices and continuous positive airway pressure devices based on the clinician’s assessment of the patient. This is the NCD that we have been fighting against for the past 10 years. This means that we have a window of opportunity to obtain oxygen for cluster headache through Medicare. It was previously not covered by that insurance. We hope that once patients obtain this necessary and life-saving treatment for their cluster headaches, it will not be taken back once the current pandemic crisis is over. Regardless, we believe that a few months with oxygen is better than none. If you have medicare, we are urging you to reach out to your doctor for a prescription today! Even if you are not in cycle now, it will be good to prepare for your next one. The more people who use this unique window of opportunity, the better. Here is prescribing information you can pass on to your doctor if they are unfamiliar with the required high flow rate (at least 12-15lpm) and the protocol needed for cluster headache treatment. There are also other resources and studies here if your doctor would like more information. Also, if you have private insurance or medicaid and have been refused coverage for oxygen in the past, and the CMS determination was sited as a basis for their denial, perhaps it is a good time to try again. You can use the CMS information above if you should need to appeal or justify your request. Even if they haven’t given a reason for denial, it might be a good time to try again. If you are comfortable, please drop us a note at info@clusterbusters.org and let us know your success or failure with this so that we can attempt to track efforts. We are hopeful that this decades-long battle to obtain oxygen for some of the most vulnerable in our population is at an end. It seems a terrible thing that we have to take advantage of this global tragedy, but we also know that clusterheads have been living for far too long with inadequate treatment. We have been ignored and we have lost many along the way due to this ignorance and fear. Our hearts go out to those who have suffered or lost their lives due to Covid-19 as they go out to those suffering with cluster headache, especially during this difficult time. This is the link to the oxygen tri-fold document that is helpful with prescribing information https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This link will take you to additional oxygen information: https://clusterbusters.org/resource/helpful-documents-for-printing/ As always, if you have any comments or questions, please feel free to reach out. Sincerely, Eileen Brewer President Clusterbusters
  6. Psiloscribe

    Urgent Request regarding Oxygen & Medicare

    Links, yes, very sorry. This is the link to the prescribing document. https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This is the link to our page with a lot of additional oxygen informetion that can help doctors and insurance companies. https://clusterbusters.org/resource/helpful-documents-for-printing/ Bob
  7. Psiloscribe

    SUNCT or SUNA survey

    Hello Clusterbusters has started a new survey for people that have been diagnosed with either SUNCT or SUNA These TAC's are very similar to clusters but are very short in duration, such as seconds or a couple minutes long, and having many attacks per day. The number of attacks can go up to having more than 100 attacks. If you have been diagnosed with either SUNCT or SUNA please complete our new survey. We will be using the data we collect in this survey for new research projects. This will likely be the largest collection of data for these conditions and will be very valuable in future research projects. The survey can be found here: http://survey.constantcontact.com/survey/a07egywvpzdk7qkcw90/start Thank you all, Bob Wold
  8. 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
  9. Psiloscribe

    A little help from my friends

    Group, I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet. Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible. Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters. We've been able to help thousands of people that for the most part, had exhausted all other options. My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge. We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment. We have the top headache specialists in the world attending our conferences. We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators. We've completed research that showed the efficacy of LSD analogs like BOL-148 We have done research on LSA We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters. We have research starting in the next month on the genetics of clusters headaches. Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place. When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first. I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members. Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE. We are an open source organization. We do not only help people that pay for the help. I write all of this for one reason. This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done. This message board is responsible for saving lives and for all the accomplishments that have come along the way. I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves. I have poured a large portion of my life into not only this board but what this board represents. I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away. This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision. I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support. We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes. All I ask is that everyone please respect the board, respect the administrators and respect each other. You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can. Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before. Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people. The administrators of this board have done more work over the years than anyone here could imagine. Please, respect the board, respect the administrators and most importantly respect each other. Bob
  10. Psiloscribe

    Saints & Miracles

    Let' stay on topic shall we? Bob
  11. 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
  12. 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.
  13. 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
  14. 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
  15. Psiloscribe

    Patient Registry

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


    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
  17. 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
  18. 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."
  19. 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/
  20. 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
  21. 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.
  22. Psiloscribe

    Lilly & CGRP

    Sorry, I'd edit the formatting but can't seem to be able to do that.
  23. 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
  24. 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.