Psiloscribe

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

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

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

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

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

We should be posting at least a tentative schedule very soon. Thursday evening is the Presidents Reception for everyone to say hello as they get into town. Friday and Saturday are both full of presentations from 9am to 5pm I don't know that I would book the trip based upon seeing one or two speakers on any particular day. Things have a way of changing at the last minute with doctors changing flights or asking to be moved because of changes in their schedule that they can not control. Bob

I honestly would not doubt that CHSG is behind this. We've had the account for over a year. We've received checks from them. its not like the account was never operational. Grr.....

Hello Happymeal, Glad you found us and hope we can help. I hope you were able to get a script for 0xygen on your last trip to the doc. I don't know how much information on treating clusters has gotten to the medical establishment in Japan. But even if it's as current as here in the US, there are still many doctors that don't they should be prescribing 02 before anything else, let alone know how to prescribe 02 properly. Stick with it until you can get it and educate as many people on it as a treatment as you can. It will help others along the way. As to the other issues, we have a lot of info on the website linked above. The following link leads to all the general information on treating cluster headaches with psychedelics. Please click on all the embedded links also as there is a lot of information contained in these documents. https://clusterbusters.org/treatments-options-choices-and-more/psilocybin-and-lsd-in-the-treatment-of-cluster-headache/ You should read thru all this information before treating your clusters with any of the psychedelic options. This is not a “take this pill and your clusters will be cured” treatment. You will also find information on these pages regarding melatonin and other things that can help. Ordering LSA seeds is easy online. There are several sites that can be trusted and have been helping people with clusters get good product. You don’t need to mention the seeds will be used to treat clusters and if you say you will be using them for that purpose, they can’t send them to you and will cancel the order. They are not for human consumption. They know what they will be used for. The larger suppliers that have been around a while will know if they have any trouble shipping to Japan. I suppose you could do a test order for Morning Glory seeds to see if they can get to you without trouble. You can always plant them like most people. BobW

Denny, Yes we have some bugs to work out but stick around and give us a hand. It's a process just like MM treatments. Takes a little while to get it right and work out the kinks (and members OF the Kinks) But it's all worth it. Bob P.s. Answered from my phone.

Thank you. Yes this is huge for everyone with cluster headaches. It is finally a first step in something that others will now be interested in working on cluster research that will hopefully lead to a cure and not just more ways to try and treat symptoms. I want to thank everyone on this particular message board for years of hard work and dedication to helping others. This has grown from a small private group on yahoo to being able to hold conferences that doesn't have enough time in the schedule to fit in all the doctors that wish to speak to our group. To all those that have spent so much time keeping this board open and a place where everyone can come for help. for all these years, I can't thank you all enough. Proud to stand with all of you together. We may have always operated outside the box and have had detractors along the way, and still, but standing on the truth, with conviction, can still get results. Peace, Bob

You are hearing it here first. Clusterbusters is very happy and excited to announce the opening of a very important research study into the genetics of cluster headache. This study is currently recruiting people for possible participation. This study is a collaboration between Clusterbusters, Dr. Robert Shapiro, University of Vermont Medical Center, Dr. Guy Rouleau and McGill University. We are looking for individuals who have received a diagnosis of CH from a doctor, who have at least one immediate family member who also has received a diagnosis of CH from a doctor to participate in the study together. Two (or more) family members must agree to participate. We are currently contacting individuals that have joined our patient registry or completed a previous Clusterbuster’s survey and have indicated they may be good candidates through their answers and information. We will be contacting people in smaller groups so it may be some time before we get to you but we will be getting to everyone that is on our patient registry that meets the necessary criteria. Should you decide you’d like more information, you will be given contact information. You do not necessarily need to reside in the USA to be a possible participant. If you wish to be contacted to see if you are eligible to participate, you will need to first be a member of our patient registry. If you have not already entered your name and information into our registry, you may do so by visiting the following site: http://tinyurl.com/n9ou73a Regards, Bob Wold President, Clusterbusters, Inc.

Yes Marc, The domain that OUCH US used for thousands of their links has been now redirected to this other site. Anyone that saved a link to a research paper or information on everything from 02 to employment support papers now have a link just to his site. Clicks are worth dollars. Bob

Sorry the embedded link doesn't copy/paste well. Here is the long link: https://clinicaltrials.gov/ct2/show/NCT02438826?term=NCT02438826&rank=1 Pixie, did you check the list of sites that will be open in the US? Is there one on the list close enough? Some on the list aren't yet open for recruiting. If a site opens for people that have been told there isn't one near by, you will get an email notice if one opens up. If everyone checks the list and sees one that you are willing to travel to even if your response says there isn't one close enough, let me know. I know people. My people are your people. So YOU know people. Bob

Additional details on the chronic cluster headache study is available on clinicaltrials.gov (click here for ClinicalTrials.gov identifier NCT02438826). You will receive another communication from Clusterbusters in June when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study. Bob

Update: First off, this is the latest release. Posting it here so it's a record in this thread and in case people didn't catch it in the others. Subject: Eli Lilly NOW Enrolling Episodic Cluster Headache study Eli Lilly has recently informed Clusterbusters that they are now enrolling patients with Episodic Cluster Headache into their clinical study. Many of you likely reviewed the details on clinicaltrials.gov. For more information and to pre-screen for this study, please click on the link below or dial the toll free number. If you pre-qualify for the episodic cluster headache study based on the initial questionnaire, your information will be provided to a physician and you will be contacted for further evaluation. This study is enrolling now. Get started here. For more information, visit www.ClusterTrials.com or call us toll-free at 1-855-375-7139. Secondly, I wanted to answer a few questions and make a couple of comments. We enrolled our first patient already and he will begin participating next week. I can say we because it's a Clusterbuster Clusterhead. The Chronic study is set to begin recruiting patients in the beginning of June. Clusterbusters will let everyone know when it goes live on clinicaltrials dot gov If you have been pre-approved already but were told that there was not a study location near you, that may change and you will be contacted. If you check the listing of site locations listed on clinicaltrials dot gov and scroll far right, you can check to see if the closest site near to you has started actively receiving patients. Some sites have not yet come online but will very shortly. You may have one close by and been told there wasn't a site for you. They are also opening up the travel radius for us. If you're not yet 18 years of age, but will be within the year, wait until you turn 18 and go through the pre-approval process to see if there are still any spots open. If you are interested but have questions about your previous use of psychedelics, you're best bet is to go through the approval process and if pre-approved, you'll be able to get all your answers from the Clinical study site doctors/investigators. Don't fret, they are working with Clusterbusters afterall, so..... Botox will not necessarily exclude you. I would suggest going thru the process and if approved, you can speak with the doctors. If approved and end up getting a placebo, you will not be left to suffer without meds. Your doctor will explain the process and what all is allowed. Best not to assume anything. Eli Lilly spent a great deal of time with cluster patients as well as accepting recommendations from clusterbusters. They are actively dealing with us constantly and were doing so from the beginning of the study design to make sure that there was a balance between what was best for the study and what was best for the patients. As to treating symptoms and not the cause, this is true in many ways. However, One of the ways to finding a cure is to determine what symptoms are being caused by the condition, where they originate from, and what treatment eliminates those symptoms. This is the only way to work backwards to the root problem. So far we don't have many clues as to what really works consistently to treat the symptoms. This is one reason why research into psychedelics is still important. it helps build the roadmap towards a cure. If it turns out that CGRPs are an effective and safe treatment, then they need to be tracked back to whatever is sending these molecules on their way to causing such pain. Therefore, I feel this is a huge step forward to finding a cure if successful. The fact alone, that this is the first time ever that clusters have been studied to this extent, means it's probably the biggest step toward a cure we have had in 350 years. We will be taking another big step forward this year when we open up our genetic study. Once we identify the gene(s) involved, we will actually have some dots to connect. Bob

We enrolled our first patient already and he will begin participating next week. I can say we because it's a Clusterbuster Clusterhead. A couple of answers to some questions that have come up. The Chronic study is set to begin recruiting patients in the beginning of June. Clusterbusters will let everyone know when it goes live on clinicaltrials dot gov If you have been pre-approved already but were told that there was not a study location near you, that may change and you will be contacted. If you check the listing of site locations listed on clinicaltrials dot gov and scroll far right, you can check to see if the closest site near to you has started actively receiving patients. Some sites have not yet come online but will very shortly. If you're not yet 18 years of age, but will be within the year, wait until you turn 18 and go through the pre-approval process to see if there are still any spots open. If you are interested but have questions about your previous use of psychedelics, you're best bet is to go through the approval process and if pre-approved, you'll be able to get all your answers from the Clinical study site doctors/investigators. Don't fret, they are working with Clusterbusters so..... Bob

Subject: Eli Lilly NOW Enrolling Episodic Cluster Headache study Eli Lilly has recently informed Clusterbusters that they are now enrolling patients with Episodic Cluster Headache into their clinical study. Many of you likely reviewed the details on clinicaltrials.gov. For more information and to pre-screen for this study, please click on the link below or dial the toll free number. If you pre-qualify for the episodic cluster headache study based on the initial questionnaire, your information will be provided to a physician and you will be contacted for further evaluation. This study is enrolling now. Get started here. For more information, visit www.ClusterTrials.com or call us toll-free at 1-855-375-7139. -------------------------------- The Chronic Cluster arm of this study will be opening up soon. We'll let everyone know when that happens. Bob

Yes OUCH US turned over all assets to Clusterbusters when they closed shop. The domain was being handled by someone else while we were transferring files. The domain came up for renewal and was taken over by a guy that was more interested in getting "clicks" for his website than helping people. He knew that a lot of people had saved links to the OUCH site so every time someone clicks to read an old article or information, they get to go to his site. Clusterbusters is in the process of going thru all the old files and removing these links so people can find the information they are looking for but it takes a lot of time. Bob

The Lilly trial is NOW recruiting. Subject: Eli Lilly NOW Enrolling Episodic Cluster Headache study Eli Lilly has recently informed Clusterbusters that they are now enrolling patients with Episodic Cluster Headache into their clinical study. Many of you likely reviewed the details on clinicaltrials.gov. For more information and to pre-screen for this study, please click on the link below or dial the toll free number. If you pre-qualify for the episodic cluster headache study based on the initial questionnaire, your information will be provided to a physician and you will be contacted for further evaluation. This study is enrolling now. Get started here. For more information, visit www.ClusterTrials.com or call us toll-free at 1-855-375-7139. ------------- Yes this is very much different from the Merck attempt. Thank you lbh Bob

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

Looking forward to seeing you in September Professor. I hope you decide to come Moxie. We have someone coming from Norway and Scotland and I think we need to fill out the United Nations of clusters. Bob

Hello everyone I received the following email earlier today: To whom it may concern: With a very heavy heart and sadness I have to tell you that Mark Hillaby has passed away on January 5, 2015. He suffered from COPD and flu complications along with a mild stroke took him away from me after a short stay in the hospital. He was a man who loved life, his friends and contributions to the life of others such as the Cluster Headache study he helped bring to life. This email was from his wife. For those that don't recognize the name, Mark Hillaby, it's ok. Old-timers will remember him as PinkShark Mark. Mark was one of the originals on the CH dot com board and was a huge advocate for everyone with clusters. His fame comes from his involvement in discovering and developing the psilocybin treatment and the use of LSD for clusters. Between myself, Mark and our good friend Flash, we set up the basics of what has become Clusterbusters. Flash and Mark did all of the early work on setting up the entire process and making it available to everyone. Worked from scratch on developing the dose scheduling and all the initial work. Mark was actually responsible for my first dose so you can imagine how sad this is for me. The foundation that was set about 15 years ago here, on the message board, is responsible for all the advocacy and research that has come from those early days. Without his work and that of Flash and others, there would never have been a trip to see the researchers at Harvard or the study that came from that. I wish he'd lived to see the news about the latest studies and the new one we're working on with psilocybin. If you want to read some great debates, check out the old posts from 2001 and 2002 at ch dot com. I could write a book of his involvement and importance and I may at some point. I will write more later. But for now I needed to let everyone know that this special man has passed. All the best Mark. I'm sure the psilocybin is legal and readily available where you are. Bob Pinkfloyd

Batch, Thanks for your comments. Let me say a few things. First of all, let me tell you that I feel your frustration regarding getting people to listen about D3. You've had it easy though. You've tried to get people to listen about a vitamin. Try getting the same doors slammed on you while trying to explain that a schedule one drug (psilocybin, LSD) is safer and more efficacious than anything on the market. ;-) I can assure you and I'm sure you understand from my own stance and that of Clusterbusters, that we have always had the same skepticism and issues with Big Pharma. I've taken a beating over the years for pointing out the costs involved and the side effects of cluster medications. Every time I quote the deaths involved in the early Imitrex days and since, I get hate mail. Not from Big Pharma but from people that use them safely and a couple of groups that think that only pharmaceutical options should be discussed and suggested for use. That said, I hope that people understand that we wouldn't be involved in this study if we didn't think it was an important step forward for people with clusters. As to the possible future costs, we have no idea if it will get approved but if it does, have no idea what the cost will be. Costs are usually based up the other options people have and other condition specific issues. I had a prescription for Migranal filled this year. 8 bottles that are supposed to be a month supply. The cost? $3500.00 and that was for the GENERIC. A generic for DHE which has been around for decades. (DHE, not the generic) As to the research, no one has ever made this sort of investment in a phase three cluster study. They are doing this without it being approved as an orphan drug which would have allowed them to charge prices we see for other orphan drugs, like $38,000.00 a year. There are other companies doing more research on this class of drugs in migraine. If it is successful and safe enough to be approved, those medications would end up being like every other migraine drug that is handed down to cluster people. Off Label with all the inherent problems that come with that such as insurance coverage refusals. This study will show efficacy in clusters and not having doctors prescribing them off label and guessing at efficacy and safety in cluster patients. One of the most important parts of this study is that scientists are actually learning about and researching the mechanisms behind cluster headaches. Much of the research in clusters before this was directed toward invasive surgery. I much prefer looking at this route to expanding deep brain stimulation. There is a lot more I could say about this study and will as it progresses. But I do believe Lilly is going about this in the right way. Working with the cluster community and learning about the condition. They could have directed this study toward migraine and then thrown it at us with little or no understanding of the cluster headache mechanisms. Hopefully work that will one day lead to a cure. This isn't it, but it's a step that no one has been willing to take up until now. In the meantime, Clusterbusters is continuing our work with psilocybin and that study should also be taking place this year. We are also about to announce the start up of our genetic study. Bob

Latest update. You are hearing it here first. Subject: More details available on Eli Lilly clinical study Clusterbusters has been informed by Eli Lilly and Company that additional details regarding their clinical study in patients with episodic cluster headache have now been posted on clinicaltrials.gov. (see below for website). Please note that investigator sites (doctorÂ’s offices conducting the study) will continue to be added to clinicaltrials.gov as they become approved by ethics committees over the next few months. You will receive another communication from Clusterbusters (late April), when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study. Additional details on the chronic cluster headache study will be available on clinicaltrials.gov in April. You will receive another communication from Clusterbusters in June when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study. Please visit the following site for more details: https://clinicaltrials.gov/ct2/show/NCT02397473?term=LY2951742&rank=3 ClinicalTrials.gov Identifier: NCT02397473 A Study of LY2951742 in Participants With Episodic Cluster Headache Bob Wold

We need your help. This is a chance for everyone to be an advocate for the cluster community. Clusterbusters along with representatives from the Alliance for Headache Disorders Advocacy (AHDA) will be visiting the offices of CMS during the Headache on the Hill event in April. We will be continuing our efforts to get CMS to reconsider their determination of non-coverage of oxygen for Americans covered by Medicare and Medicaid. We will be following up on the letter that was sent by the Senators asking for reconsideration and our continuing discussions with CMS. Their determination is based upon their feelings that their is not enough evidence of 02Â’s safety in the Medicare eligible age group. They have in the past requested/required a large scale study with people over the age of 62 and for many reasons this will most likely never take place. Three of these reasons would be: 1. People of that age have most likely used 02 in the past which would disqualify them from a study of this kind. 2. If they could be found, it would be unethical for doctors to give placebo air to hundreds of cluster patients, knowing it would not help. 3. A phase 3 study would cost millions of dollars that do not exist to test something that has been used for over 50 years as the first line of acute treatment of cluster headaches. They need to hear from the patients themselves. We want to bring a stack of letters with us to the meeting detailing the need, the usefulness and the safety of 02 for cluster patients. There is no reason for people that have been safely using 02 for years, to end up with no coverage once they retire. This decision also means that people on Medicaid do not get coverage. For this reason, the most vulnerable and those that the financial burden would cause the most harm are greatly impacted. Ironically, Imitrex which is much more expensive as well as contra-indicated in this same age group, is covered. You would think that the safest and least expensive treatment would be the treatment of choice but this is not the case. Our congress agrees with us and now we must convince the one and only U.S Government agency that does not accept these facts, to hear us and act to change their determination. I would ask everyone to write a letter and address it to the following office and person: Tamara Sryek-Jensen Director-Coverage and Analysis Group C/O: Centers for Medicare and Medicaid Services (CMS) Center for Clinical Standards and Quality 7500 Security Boulevard Baltimore, MD 21244 Letters from current Medicare and Medicaid recipients are most important but letters from everyone are needed. A couple of points you might want to make: If you are in these affected groups, please tell Ms. Sryek-Jensen if you have been using 02 safely and itÂ’s effectiveness. Tell her how long you have been using it. How much of a financial strain it would be, or is, that it is not covered. Mention how important 02 is in your life. You can mention if you feel it is safer for you to use than Imitrex or other acute treatments. We need to let them know how important 02 is to you and your family. If you have had trouble getting your insurance company covering 02, one reason is probably because they are falling back upon this determination from CMS. This decision has far reaching implications. If you are not of eligible age yet, you will be some day. What I would like everyone to do is write a letter, print it and sign it and send it to us so we can deliver them when we meet them. We need to make sure that all the letters get entered into the latest appeal and do not get lost in the process. Hard copy letters with signatures are important and the more we have the bigger the statement we will be making. This is your opportunity to make a difference in the lives of every cluster sufferer in the U.S. The length of the letter does not matter as much as the letter itself and the stand you are taking. Please get it to us before April 14, 2015 Please write the letter and send it to us at: Clusterbusters P.O. Box 574 Lombard, Il 60148 I will make sure they are entered into the records and hopefully make an appearance in the congressional hearings we will be requesting. Thank you Bob Wold