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Psiloscribe

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Posts posted by Psiloscribe


  1. I haven't heard any updates on Ralph's (from Ralphsters spores) but know he isn't in business anymore. If anyone ever hears anything about him please let me know.

    In the meantime, I need a few names of reliable sources for spores and other supplies such as Skullcap. I want to contact them about a few things including if they'd like to participate in our conference coming up in September.

    The general board probably isn't the best place to be discussing all this but I wanted to get to everyone so please just send me a PM if you can help out with some info.

    Or just send me an email at psiloscribe@yahoo.com

    I've also had a very difficult time finding the old you tube video (set of 4 or 5) about growing that I used to like the best. It was by "RoadKill"

    Anyone have a link? Or suggest a new set to use as one to help people out the best. One that handles the basics of the PF Tek.

    Thanks very much for any help.

    Bob


  2. No this is not the BIG news that we expect to release soon but it'll be the start of a string of interesting work that will be shared.

    I have spoken with these gentlemen several times and they seem genuinely interested in developing something that could be beneficial to people with clusters. They are looking for about 10 people to take part in this. If you want more info before contacting them you can send me a message and I can share a little more than what can be posted publicly.

    A North American health care company is developing a new (improved)treatment for Cluster Headaches.

    The Company is currently doing market research and is requesting a 1 hour phone interview.

    Your input will help in bringing new treatments to the market for Cluster Headache suffers.

    If you are open to being interviewed please email ClusterHeadAcheResearch@yahoo.com and provide answers to the following questions. Only those selected for an interview will be contacted:

    •      Do you live in North America – Y/N -  ___________

    •      Are you available for 1 hour phone call – Y / N - __________

    •      How do you treat your Cluster Headaches Today -____________

    •      Please provide your email address - ___________________

    •      Please provide your phone number - ________________________________

    •      Do you work for a market research company, an advertising agency or a health care company – Y/N - ____________

    •      Do you suffer from episodic or chronic cluster headaches -_____________

    Sincerely,

    Jon and Glenn


  3. Dear HOHers,

    This yearÂ’s Headache on the Hill will be held in conjunction with the American Academy of Neurology annual meeting in Washington, DC.  House and Senate visits will be on Thursday, April 23rd , and preparatory meeting on Wednesday, April the 22nd.

    This year sign-up will be different than in the past.  Simply email Shirley Kessel  happyislander@comcast.net , who will be assisting us in the arrangements, and she will send you the application form. She will also give you hotel information.

    Please note that like last year the AHDA will not be reimbursing for travel.  They will be reimbursing non-neurologists $200 for their hotel room.

    We have been allowed to reserve a small number of rooms by the Academy – so first come first serve for rooms where the meetings will be held!  If these rooms are taken, and only more expensive ones are available, unfortunately they will still only cover $200.

    We are also working on securing additional rooms at a nearby hotel where we may all be able to reserve rooms and is only a short distance from the convention center/meetings as well as close to the Capital. We will announce this info as soon as possible.

    Here is what we know about the program so far.  We will meet in the evening at the Convention Center at 4PM.  You will be given passes to get into the meeting room. We will be given our visit schedule at the end of the meeting, and then meet for photographs in front of Congress at 8AM on the 23rd before going off to Congress

    Clusterbusters will be awarding five (5) travel scholarships in the amount of $250.00 to those most in need of help getting to DC. These will be awarded based upon need and preference will be given to those residing in states that might not otherwise have representation. One of the most important factors in getting results is to make our presence known in as many offices as possible.

    For consideration for one of these travel scholarships, please write me at psiloscribe@yahoo.com and I will send you an application.

    Thank you again to our membership for all your advocacy work in the past.  I look forward to seeing you in Washington and to having a great HOH.

    I will be posting additional information as it becomes available.

    Bob Wold

    President

    Clusterbusters


  4. We have some exciting stuff going on this year and I want to be able to expand our reach as far and wide as possible.

    Our patient registry is going to be very important to our work and cluster research in general going forward.

    The registry can not be changed in any way and all data must be collected into this one registry. One problem is for people that don't speak English being able to not only find but to understand and complete the registry.

    We have a German translation that will be available to help our German family members to complete the registry.

    If there is anyone here that can help us add more translations it would be greatly appreciated.

    I know we have some French, Dutch, Finnish and many other members from around the world. Help us spread this important registry to your fellow countrymen and women.

    if you can help, please post here that you will help out as well as sending me a PM so we can work together on this.

    The registry is located at: http://tinyurl.com/n9ou73a

    Thanks very much for your help. A translation will help add to the worldwide face of clusters and gather important epidemiological information and just may save someone's life down the road.

    Bob


  5. I need everyone's help please.

    If you haven't already answered this on Facebook:

    I need the answer to the following question and not to be rude, but, I don't need a lot of reasons why or questions, so we can keep on topic. We can discuss later. I promise. For now;

    If you had to fill out a short diary about your cluster activity, over the previous 24 hours, every day, for a couple of months, would you prefer to complete it every day between:

    A. 7:00-9:00am

    B. 12:00-2:00pm

    C: 6:00-8:00pm

    Thank you all and please share with your friends and enemies alike ;-) .

    Bob Wold


  6. Thank you all again.

    Here is to a kick ass 2015 !!!

    You heard it all here first. ;-)

    Clusterbusters

    The Year in Review and a Look Forward

    2014 was a year during which we made great strides in our missions to bring awareness, educate sufferers & the medical community as well as various political agencies that can help us bring about improved treatments and understanding of cluster headaches.

    The research projects that we have been working on for years all made giant leaps forward and we find ourselves on the cusp of major breakthroughs.

    All of the following advancements and success stories are a tribute to all the people that have supported Clusterbusters, not only this year but those that have been working hard since 2002. I want to thank all of those that have stood tall and remained dedicated to doing everything they can for one purpose only, helping others.

    Advocacy & Education:

    These objectives are worked upon every day of the year by many people. Social media and our ability to reach out to others that suffer has continued to grow and we have been able to reach out to many people that had thought for years that they were fighting their battles alone.

    Message Board:

    A lot of research and education takes place on our message board http://clusterbusters.clusterheadaches.com/ as well as discussions on various treatments. We will be making some sweeping changes and updates on the board this year and it will be even more beneficial to all of our members there.

    Headache on the Hill

    The first large scale advocacy effort of the year was our attendance at Headache on the Hill in Washington DC in February. Our work with the Alliance for Headache Disorder Advocacy continued to build upon our previous work in DC and although frustrating at times, our steadfast work is showing signs of making large strides for people suffering with all forms of headache disorders. Our determination has always been to knock on as many doors as possible and keep knocking until we are heard is paying the dividends.

    The numbers of cluster advocates that come together in DC each year continues to grow and the government officials that are in positions to help us know that not only are we not going away, but our voice is getting larger and louder.

    We have made some headway in our fight for oxygen coverage from the SSA and continue that fight. The fact that these discussions continue and have not been flatly denied as had been the case in the past is a testament to the extraordinary group of advocates that is involved. Working with the top professionals in the medical field, politicians that have stepped up and have joined us and all the individual patient advocates are being listened to more than ever in the past.

    We have many issues that we will continue to advocate for this year and appreciate anyone that wants to join us in this fight. This yearÂ’s Headache on the Hill event is April 22nd-23rd and we will be updating everyone on how to take part in this event shortly.

    Talk with anyone that has attended our event in DC and they will tell you how empowering it is to those attending and how important it is in advocating for all of us. This event offers the opportunity to speak up and make a difference for every cluster sufferer and every family that is touched with headache conditions.

    Advocacy and Publicity:

    We have been able to make great improvements in our website and it is the source for important information for all sufferers and keep everyone up to date on our work.

    Our Social Media footprint has grown and we have been able to reach a much larger audience. Our open source policy on spreading information has been essential in allowing people to learn the facts of what is available to them and let them make up their own minds on what is best for them.

    We have been able to make several appearances on TV and reach large portions on the general population. There was an international news piece that appeared while we were in DC in February that generated a great deal of publicity and awareness.

    Through our public relations firm that donates all their time and energy to us and a lot of individuals making contacts, weÂ’ve appeared not only on many TV stations but numerous radio broadcasts and many newspaper/website articles this year.

    There also have been several very successful fundraising efforts and our trip to DC and the conference in Nashville received quite a lot of coverage.

    All of this additional publicity has helped cluster headaches reach a greater audience and has caused us to handle more inquires than ever before.

    All of these improvements have helped us get the word out to more levels of the medical community as well as reaching more cluster sufferers.

    I look forward to all of this adding up to Clusterbusters growing again this year in many ways. We will be looking to add more volunteers and will be hoping for increased donations to help us continue to grow. It is a sign of a healthy organization to continue to grow and have a louder voice 12 years after itÂ’s formation. Thank you to all of those that have helped us grow and continue to help spread awareness and increase our research efforts.

    Research:

    2014 was a banner year in our mission of increased research efforts and positive movement has been seen in many areas.

    As was discussed in our Nashville conference report,  https://clusterbusters.org/report-2014-conference/

    We have several projects in the works and all of it adds excitement to our work and shows the medical communities approval of our work, our missions and our determination to move cluster headache research forward. More progress has been made over a larger spectrum of research, than ever before. We are currently, actively involved in more cluster research projects than I believe have ever been underway in history.

    Our patient registry http://tinyurl.com/n9ou73a  will be instrumental in helping all of these projects move forward. Because of the rarity of clusters and the difficulty the medical community has always had in the past with finding enough patients to fill large studies, filling studies has been a problem for research institutions. This is no longer a problem because of the Clusterbuster patient registry. It is also instrumental in making the point that not only are there a lot of us out there, but there are a lot of us that want to help move research forward. Our common voice in demanding to be heard is loud and clear and people are taking notice. EveryoneÂ’s participation in the registry is essential to future research as even if you donÂ’t participate in a study, the demographics and epidemiology data that it provides is very important.

    As you will see in the research below, we are directly involved in research that will effect everyone with clusters, no matter what treatment you may find effective. Your information is vital to research and will help all cluster sufferers for years to come. Please sign up if you havenÂ’t yet and please share the link if you have.

    Confidentiality agreements are in place but I will share what I can on our research projects.

    BOL-148 as we reported at the conference, a new drug development company was looking to move this research forward. There has been a lot of advancement on this and itÂ’s moving forward. This is one of our international efforts and the team is growing and all the pieces are being put into place. Look for 2015 as the year that we make great strides on BOL-148

    Psilocybin: This clinical study is being put together and in the process of final approvals. The research institution is in place as is a federal agency that is on board and working with us. The initial funding has been secured and the only thing between us and clinical study of cluster patients and psilocybin is paperwork. We believe we have the team together that will carry this research forward very soon.

    Genetics: This study is the closest to patient recruitment and we expect to be starting that phase the first quarter of 2015. We are equal partners in this with a renowned institution in Canada and well known headache specialist and one of the worlds leading geneticist.

    Big Pharma: Clusterbusters hosted a focus group meeting at the 2014 conference in Nashville. Due to the efforts of Clusterbusters and in large part to those people that participated in this focus group, there has been positive movement forward. The progress and direction of this project is based upon cluster headache sufferers telling the industry what we need and what we want in a treatment and not the usual hand me down medication from other disorders.

    The establishment has heard us and is working with us to research treatments specific to cluster headaches. There is a scheduled meeting this month move this groundbreaking project forward.

    Medication Use Survey: Followup: This survey and itÂ’s results, which was a collaboration between Clusterbusters and researchers at Yale University, was Presented at the 2014 American Headache Society annual meeting in LA and was the topic of conversation between many of the countries top headache specialists. Our results that looked at everything from prescription medications to psilocybin detailed the true efficacy of many of the medications that are in use for clusters. The percentages of effectiveness that are reported by pharmaceutical companies following their clinical studies do not always carry forward to real life. As we all know, many medications that seem to work in the beginning, fail to offer sustained relief. This study shows some of these discrepancies and will hopefully be helpful in the future as doctors try to find medications that actually help in the long run.

    As an aside on this presentation at the AHS conference, we were also able to distribute information to many of those in attendance on the proper use of oxygen and the importance of making it available to people with cluster headaches as a first line treatment. This in particular is one of our most important areas of education.

    Psychological Burden:

    We have two separate surveys/studies in the works regarding some of the psychological issues that surround cluster headaches. One will be looking at the psychological burden that clusters cause to the sufferers and their families and will eventually be a huge help in explaining the needs of additional studies into PTSD issues and assist us in our negotiations with different government agencies for increased research funding and benefits.

    Everyone on our patient registry should be getting information on this and how to participate in the near future.

    2015 Clusterbuster Conference

    The 2014 conference in Nashville was another huge success and will be difficult to top but 2015 is already stacking up to be even bigger and better. Our conferences have grown in attendance as well as the line ups of those making presentations being more exciting and informational each year.

    2015 will be the biggest and best yet and will be held in Chicago on the weekend of September 17th thru the 20th. Information on hotels and registration will become available after our trip to DC for the headache on the Hill event. These dates are set though so you can start making plans.

    You can expect a great list of presentations, updates on all the clinical studies and meeting a wonderful group of friends and cluster family members.

    In Closing;

    We all look forward to a year of great progress for all cluster sufferers and their families as we work together with other organizations such as the AHS, AHMA & AHDA and all their associated organizations. We are working with many of the best research institutions and researchers in the US, Canada and Europe and making an impact on the international medical community.

    I want to thank the Clusterbuster Board of Directors as well as the dozens of volunteers that have put so many hours into building our successful and effective organization. Due to the hard work and dedication of so many, I expect 2015 to be a year filled with progress, growth and improved treatments and lives of cluster sufferers and their families, internationally.

    Bob Wold

    President

    Clusterbusters


  7. I am trying to get an update on Ralph but haven't heard back.

    He has the "C" other than Clusters what I did hear was not good.

    As I said earlier, he has helped hundreds of cluster people and never wanted any acknowledgement for what he has done for years. His only reward was coming to the conferences and meeting people that inspired him to do more.

    he knew that a lot of people are hesitant to order spores online and he did what he could to get them to people that might not have ever ordered them.

    Our community is full of heroes and he has certainly been that.

    Will keep everyone updated if I hear anything. Thank you, for him, for your kind words and healing thoughts.

    Bob


  8. I received some very bad news today. Ralph is very sick and is not currently in the spore business any more. I don't know if that will ever change as he is in a struggle to survive.

    Ralph has been a very good friend to myself, Clusterbusters and people that suffer from clusters.

    Ralph has attended most of the conferences that were held in Chicago and has supplied free spores for hundreds of people with clusters. eating all costs including shipping.

    He always supplied spores at the conferences free of charge but very few people knew of his work with individuals.

    I hope some of that good karma comes back to him and helps him in this.

    I know a lot of you know Ralph and wanted to let everyone know.

    :-[

    Bob


  9. Just wanted to stop in to wish everyone here a Very Happy New Year.

    I am working on a year-in-review and a look ahead post and will post it here first as soon as it's complete. There is a lot to report and some incredibly important work that will take place in the year ahead.

    I want to thank everyone here as this group is responsible for most of the progress we've made and are also responsible for thousands of people with cluster headaches being able to treat their clusters better and safer than the last 400 years of the medical science community has offered.

    This groups support, research & willingness to be open and honest about what is best for people on a human level. Putting people's health and happiness above all else and at many times their own lives and personal freedoms at risk.

    Many of you have been with me and Clusterbusters since the first day we started with the old yahoo private group and many others also for years.

    I hope you are all as proud of yourselves and your work as I am of all of you,

    Honestly, many people go thru life causing more damage then good. Most people go thru life hoping to have some positive impact on their families and others they may love, Hoping that will also "trickle down" to others.

    People here go on the line to make life changing improvements in the lives of people they will never meet,

    I'm happy to go into battle with all of you as we try to change history in a positive way, just a little.

    It's not going to be easy but stick around as we blow the lid off of this damnable condition.

    Peace & Love

    Bob Wold


  10. Patient Registry

    As announced at our conference in September, we have several clinical studies in the works. Some of which will most likely be asking for study participants within the next 9 to 18 months.

    These studies involve genetics, psilocybin, BOL and a couple others including one involving the psychological burden of cluster headaches.

    Anyone wishing to participate in these studies must be registered in our Patient Registry.

    Some of these clinical trials will have study sites outside the United States as well as within the US.

    This is an international registry and we are looking for people from every country to sign up. A couple of these studies in particular will be looking specifically for people living in the UK, Germany and Canada. Please share this information with anyone you may know residing in these countries.

    Please share so everyone, no matter where they live, has an opportunity to participate in these studies and play an active role in finding better treatments for cluster heaaches.

    To register, please go to this link:

    http://tinyurl.com/n9ou73a

    or

    http://survey.constantcontact.com/survey/a07e97nw2gdhuaj6cau/a01oyi1jyvcgv/greeting

    Bob Wold

    President

    Clusterbusters

    10-21-2014


  11. 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


  12. Thanks to everyone filling out the questionnaire.

    Even if you wouldn't ever want to take part in any study or survey, it will help us if everyone fills it out. It will give us important information on where we are located generally, where our reach has expanded to, basic numbers on gender etc.

    This will also always be open and building and I would especially like all of our long time members to get listed on this important registry.

    Don't worry, none of the info will never be shared with anyone outside of a medical setting. You won't be getting emails selling you toothpaste ;-)

    Also, if anyone is concerned about completing it and having an IP number associated with your submission, you can print it out and mail it to us and we will enter the information.

    You can also do the same with anyone you know that isn't online.

    You can also print up the information and bring it to your doctors and ask them to share it with any of their other cluster patients.

    Thanks to everyone for your loyalty, the help you have been to others in this group and the help you have all been to Clusterbusters. We have come a long way and have a lot of great adventures ahead.

    Everyone that has helped keep this board active and helpful to others has made a difference in others lives. I can attest to the fact that besides the people you see helped here, there are a LOT of "lurkers" that are also helped every day here.

    Clusterbusters

    P.O. Box 574

    Lombard, Il

    60148


  13. 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 ClusterbusterÂ’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


  14. Are Cannabinoids and Hallucinogens Viable Treatment Options for Headache Relief?

    Neurology Reviews. 2014 May;22(5):22-23.

    SAN FRANCISCO—Within the headache community, desperate patients have tried just about everything for relief. Patients have been using cannabis for headache for several decades, and more recently it has been suggested that hallucinogens may induce remission of cluster headache. At the Headache Cooperative of the Pacific’s Seventh Annual Winter Conference, Brian E. McGeeney, MD, MPH, discussed the use of cannabinoids and hallucinogens for headache. Dr. McGeeney is an Assistant Professor of Neurology at Boston University School of Medicine.

    Marijuana for Migraine

    Patient testimonials may abound, but as far as evidence-based medicine goes, “there are no blinded studies for the use of cannabinoids for headache,” Dr. McGeeney pointed out. The use of cannabinoids for pain started in the 1970s. A short paper in the early 1970s in Headache described what was essentially a withdrawal headache, “which you can certainly get, especially with the daily use of cannabis.”

    Goadsby et al demonstrated that the endogenous cannabinoid receptor ligand anandamide, which is the most well-known endogenous cannabinoid, is able to inhibit dural blood vessel dilation from electrical stimulation, administration of calcitonin gene-related peptide and nitrous oxide, or capsaicin administration. This inhibition is reversible. “This goes in some way toward providing a theory of how this [drug] may work for headache or migraine,” Dr. McGeeney said. “Cannabinoid receptors—CB1 and CB2—are located throughout the CNS and even in the peripheral nervous system. Cannabinoid receptors are 10 times more prevalent than opioid receptors.”

    In the brain, cannabinoid receptors are found not just in the cortex, but in deep brain structures as well. “And if you think it’s going to work in headache, it is probably going to have a role in particular in the brainstem,” said Dr. McGeeney.

    One theory is that the transmission of the trigeminal impulse of the first- and second-order neurons can be modulated by descending influences that can be either excitatory or inhibitory. Some evidence suggests that cannabinoid agonists may affect transmission along the trigeminal nerve. “And that is a plausible theory as to why it may work in headache,” Dr. McGeeney said. “Patients tell me that Cannabis indica is more likely to give them headache relief than other types.”

    Hallucinogens and Headache

    “There is some truth to claims that psilocybin works to abort a cluster headache,” Dr. McGeeney said. “But generally, the use of psilocybin in cluster headache patients is more to induce a remission of repeated attacks, not to treat an acute attack.” The reason why psilocybin may be helpful is its similarity to serotonin. The indole ring is a key part of the serotonin agonist, and the chemical structures of serotonin, tryptophan, and most hallucinogenic compounds are similar.

    Hallucinogenic compounds that cluster patients may be using include lysergic acid amine (LSA)–containing seeds, the psilocybin mushroom, and lysergic acid diethylamide (LSD), which is much more difficult to obtain.

    The connection between hallucinogens and cluster headache began in 1998 when a Scottish man posted a provocative comment on a cluster headache website. He said, “I’ve been getting cluster headaches for many years, and I missed my fall cycle. And the only thing I’ve done differently is the recreational use of LSD. I wonder whether that has something to do with it.” This was met with skepticism in the cluster community. But gradually, more people started to pursue hallucinogens to see whether they made a difference.

    The first things they used were seeds—Rivea corymbosa, Hawaiian baby woodrose, and certain strains of morning glory seeds—which have hallucinogenic alkaloids in them. “It is perfectly legal in the United States to buy these seeds, to sell them, and to cultivate them, but it is not legal to ingest them or to soak them in water and then drink the water, which is rather disgusting and easily induces nausea and vomiting,” said Dr. McGeeney. Cluster patients are using these seeds to try to induce a remission. Albert Hoffman, of LSD fame, analyzed the ergot in those seeds—ergine and isoergine.

    The use of hallucinogens among cluster headache patients came to light with a 2006 paper by Sewell et al in Neurology. The authors surveyed 53 cluster patients, 21 of whom had chronic cluster headache. Half of those who used psilocybin said that it completely eliminated their attacks. “In speaking to many of these patients over the years, that elimination can be anywhere from days to months. But it is not rare to come across someone who says that psilocybin will eliminate their attacks for a couple of months,” Dr. McGeeney said.

    Patients are worried about arrest when they take these substances. Possession of psilocybin mushrooms is illegal everywhere. Psilocybin is a Schedule 1 drug. Fortunately for patients, buying the spores is legal in most states. Several vendors operate online. In California, Georgia, and Idaho, however, it is illegal to buy the spores.

    “I go every year to ClusterBusters meetings and meet these patients,” Dr. McGeeney said. ClusterBusters is a support meeting for patients who have cluster headache. “They talk about treatment, and that does include alternative treatments, but not solely,” he noted. “It is not necessarily everybody or even most people who are pursuing that option.”

    LSD has been around since the 1940s. “In practice, this is a much more difficult hallucinogen for patients to get,” Dr. McGeeney said. “These are ordinary people. Where are they going to get LSD? It is practically impossible.”

    Nonhallucinogenic Hallucinogens

    According to Dr. McGeeney, the evidence suggests that to gain the cluster–abortive benefits of hallucinogens, patients do not have to hallucinate. “You can take an LSD molecule and brominate it,” he said. “And you turn it into brominated LSD, which is nonhallucinogenic.”

    Is this method useful for cluster headache? That question started to be answered a few years ago. A 2010 study published in Cephalalgia described five patients, four of whom had chronic cluster headache. They were administered brominated LSD, and they did not hallucinate. At baseline, the number of attacks per week in the five patients was 40, 40, 35, 30, and 25. After treatment, all patients had close to zero attacks.

    One of the authors of the original 2006 survey in Neurology, John Halpern, is trying to bring brominated LSD to market in the United States. The regulations and red tape have been daunting despite herculean efforts by Dt. Halpern. “But we’re hoping that this may be an option in the near future,” Dr. McGeeney said.


  15. Thank you all very much.

    Your support now, as always has been special to me and the entire family.

    I will write more later as we just had the funeral today. But I do want to address this more with the CH family.

    Bob

    balloons_zpscf6ca430.jpg


  16. For those of you that have followed along through my nephew Jacob's long illness, I am sorry to report that he had a heart attack last night and passed away.

    Since his bone marrow transplant in 2009 he has been a very sick little boy. Throughout his struggles there have been many people here that have been supportive to him and his family, including me.

    Thank you all very much for that support as it has meant so much to me and the family.

    I could say a lot more and I will but at this point it's all just incredibly sad.

    Bob

    jacob1_zpscf393f02.jpg


  17. Dear friends of Clusterbusters,

    People with all severe and disabling headache disorders urgently need your help. 

    If you think that this topic may not affect you or someone you care about, consider that the SSA has not changed their guidelines in almost 30 years. If not you, someone you know will certainly appreciate a level playing field some time in the next 30 years.

    Cluster Headaches, also known as “suicide headaches” and Migraine, which  is the 7th leading cause of all disability are just two of these disorders. Yet, the US Social Security Administration does not list headache disorders as disabilities in their Blue Book – the official list of criteria for how to qualify for Social Security benefits.

    Consequently, people disabled by headache disorders struggle unfairly to prove their legitimate disabilities. This situation is baffling, baseless, and grossly unjust.

    The Social Security Administration has recently been revising the neurological disorders Blue Book listings for the first time since 1985. Accordingly, Clusterbusters, the Alliance for Headache Disorders Advocacy (AHDA) and certain members of Congress proposed that they finally add a headache disorders listing.  Unfortunately and without explanation, they have just refused to do, perpetuating a huge mistake.

    But there is still a brief window of time until April 28, 2014 for you to tell the Social Security Administration to change course.

    Write Social Security today supporting inclusion of a headache disorders listing, including Cluster Headaches, for fair determination of Social Security benefits for Americans truly disabled by headache disorders.

    Please submit your comment to them here:  http://1.usa.gov/1gQS89a.

    Once you submit your comment, you will be issued a confirmation tracking number, though it may take up to a week for your comment to appear on-line. Please donÂ’t submit the same comment multiple times.

    Also, please forward this message immediately to everyone you know that cares about someone disabled by migraine, cluster headache, concussion headache, or other headache disorders.

    How this non-listing affects people with cluster headaches:

    Included in the listing of impairments as proposed by the Alliance for Headache Disorders Advocacy (AHDA), are trigeminal autonomic cephalalgias (TACs).

    One of these TACs, known as cluster headaches, can be extremely disabling.

    Commonly called suicide headaches as the suicide rate is in excess of 20 times the national average, these attacks are among the most painful conditions known.

    Unrelenting pain of this magnitude leaves many people disabled for extended periods of time. Although there are no FDA approved medications specific to cluster headaches to prevent the attacks, often the medications prescribed attempting to mediate this pain, leave the patient unable to perform their current job responsibilities.

    Leaving this condition unlisted is grossly unfair and leaves one of the most undeniably disabling conditions invisible. This invisibility not only hurts the patients and their families, but stifles research and continues to negatively impact all insurance coverage.

    Listing this condition does not guarantee approval or benefits and most patients are able to function well enough to work at gainful employment and will not file for benefits.

    What listing does do for every sufferer is to legitimize their pain and the struggle that they and their families endure. In essence, the SSA is saying that this condition should remain invisible.

    The fact that the government agency assigned the duty of classifying the levels of disability that medical conditions can inflict upon itÂ’s citizens, judges a condition that causes people to kill themselves at alarming rates, deserves no listing.

    As headache disorders are many and each one varies in severity and the disability that is inflicted, they should be listed in the registry as directed by the AHDA and those people that meet the suggested inclusion criteria, should be considered for benefits.

    The exclusion of cluster headaches and other headache disorders has a serious negative impact upon hundreds of thousands of sufferers and their families. Exclusion stymies education of the medical community as it dismisses the seriousness of these disorders. This negatively impacts the career paths of professionals into this field.

    Few doctors specialize in headache treatment, little research is conducted, and safe effective treatments vary from minimal benefit with severe side effects to no benefit at all. A portion of the blame for this untenable situation is the lack of a spot in this registry.

    Consider the research institution that wants to open the registry to see where they can begin research to relieve the most pain, the most disabling conditions, to make a positive impact upon people that are suffering. They can open the book up and never find a mention of a condition that is considered the most painful condition known to man.

    We have no medications. We see no research for help in the future. We are non existent to SSA. All the while this painful chronic condition is causing our members to take their own lives.

    Please let those that remain and suffer know that the SSA acknowledges their existence by including them in the Federal Registry.

    The Social Security Administration has been entrusted by citizens of the U.S. and Americans with Disabilities Act to address and codify disabling conditions. In addition to the above action, Clusterbusters asks U.S. citizens to "sign on"  to our letter written specifically to Acting SSA Commissioner, Carolyn Colvin.

    On February 11th, 2014 Ms. Colvin's office hand delivered a Response Letter, to Clusterbuster advocate John Bebee. We feel strongly that this letter essentially perpetuates invisibility of chronic migraine and cluster headache by stating "We generally evaluate chronic migraine and cluster headache in adults under the most analogous listing-non-convulsive epilepsy-...". 

    We believe the agency has a duty to understand the only "analogous" feature between cluster headache and epilepsy is they are disabling. 

    Please visit our sign-on petition on Change.org at:: http://www.change.org/petitions/acting-commissioner-carolyn-w-colvin-segregate-and-list-independently-in-the-blue-book-of-disabilities-chronic-migraine-cluster-headache-currently-hidden-under-epilepsy?utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_mobile&recruiter=61022944

    Thank you,

    Robert A. Wold

    President, Clusterbusters, Inc.


  18. I would ask you all to be a little patient with us. Yes there have been recent changes on the website and more will be coming.

    There are many good things about social media and being able to reach more people, but this also creates additional problems. The increase in the numbers of people we can reach with helpful information is proportionate with the numbers of detractors and those that would do harm to our goals.

    The bigger steps we take forward and becoming more accepted and understood, the more drastic the steps people will take to hurt us.

    For us to be able to continue to spread the word we must be smart.

    Our Clusterbusting documents have recently been granted a copyright and a copy now sits in the Library of Congress. Now, not only are these treatment methods available from Clusterbusters, but the US federal government is also making these documents available. I think that is pretty cool and an important step in what we are trying to do.

    Please be assured that changes we make are regarding this issue are intended to assure that this information will ALWAYS be available.

    This is the direct link

    https://clusterbusters.org/?page_id=1618

    It can be found on the website, in the treatment tab at the end of this section:

    Response of Cluster Headache to Psilocybin and LSD – R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr

    Note:  the above link will download and open a .pdf file of the report

    Published in Neurology in 2006 and linked here from the MultiDisciplinary Association for Psychedelic Studies (MAPS).  The abstract reads:

    The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD)to treat their condition. Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks; 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension. Research on the effects of psilocybin and LSD on cluster headache may be warranted.

    This case report lead to the development of a research protocol into the potential use of these substances in the treatment of cluster headache.  While there are yet no clinical trials underway, we provide an easy to read overview of the protocols and procedures that were/are being discussed and developed for future research projects in the  following pages – click here. 

    It is in the "following pages-click here" link at the end.

    Bob

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