Psiloscribe

Anyone considering attending should register and book a room as soon as possible. Rooms are limited and the cut-off date for the reduced rate is fast approaching. We will also be announcing additions to the programs shortly. Hope to see a lot of you there. I heard there is a party in FunGuys room. ;-) http://events.r20.constantcontact.com/register/event?oeidk=a07e5laz9vf2d3c9cfa&llr=asfwt7iab

Thanks Brew. Important stuff... Happy Anniversary Bob

Clusterbusters has been officially accepted as a full member of the (ADHA) Alliance for Headache Disorders Advocacy. http://www.allianceforheadacheadvocacy.org/who_is.htm We believe this is a big step forward for Clusterbusters. Our admittance into the Alliance, which consists of some of the most prestigious cluster and headache specialists and organizations in the U.S., signals a willingness and desire of mainstream medicine to work alongside Clusterbusters. I would like to thank all the people that have worked so hard over the years to make this possible. We have certainly come a long way. I would also like to specifically thank all the people that traveled with us and the Alliance to Washington DC this year. Everyone represented Clusterbusters and cluster sufferers everywhere, in a professional manner while displaying both passion and determination in their advocacy efforts. We think this is an excellent opportunity to work with the Alliance and itÂ’s member organizations as well as some of the individuals to find new ways of helping cluster sufferers everywhere. Thank You Bob

Just to set the record straight and give credit where credit is due: The discovery of using LSA containing seeds to treat cluster headaches was made by a Clusterbuster supporter named Hannah, from the Netherlands. Her husband was using mushrooms to treat his clusters and was only getting about 80% relief. Wonderful in itself but she wanted to try breaking the cycle completely. Not having access to LSD, but being a med student, SHE did the research and found the connections to the seeds. They tried the seeds and broke his cycle. Proving again that we ARE our own best advocates. Following this discovery, many others tried them and had success. Long after this, Clusterbusters and MAPS hired paid Dr. Sewell to complete the study on seeds that was mentioned. OUCH UK, not only had nothing to do with this but has long had the policy (which they are entitled to) against ANY connection to ANY of the psychedelics as treatments and forced out any members that tried to post about these treatments. This discovery of the seeds became a very important issue to many in the UK. Early on, mushrooms were actually available at all the local shops in the UK. People with clusters were able to jump on their bikes and ride down the the corner mart and buy what they needed. This suddenly changed during an election year (Tony Blair) and England banned the shrooms in a "get tough on drugs" move for re-election. Many people that were successfully treating their clusters, had no where to turn. Hannah's discovery came just in time for people to switch over to seeds through mail order. Certainly saving more lives than a ban on mushrooms EVER will. So, Hannah, wherever you are: Cheers!!!! Bob

Thank you for posting this. Funny how the story of how LSA seeds came into use changes. Bobw

The man behind the cutain is not the illuminati. Just a carpenter from Chicago.

Its not often, if at all that a celebrity admits to clusters.... How will Daniel Radcliffe's fans react to his latest turn - as a ... The Independent "I was in the middle of these weird things called 'cluster headaches'," he explains. "It's very rare evidently, but it's exceptionally painful. http://www.independent.co.uk/news/people/profiles/how-will-daniel-radcliffes-fans-react-to-his-latest-turn--as-a-damaged-drugtaking-beatnik-poet-7848568.html Bob

Is that how you measure ALL your medications? By what looks like enough? Bob >

Awww, shucks and Pshaw, 8-) Thank you everyone. It was a good day. It's my grandson's 1st Birthday also. Get to share my day! But thank you all for the very kind words. Bob

Oh Yeah, you can pay there, but try paying BEFORE hitting the tables...... I've had that plan before LOL There will be plenty to do besides gambling. No need to stay in the room, even if the pit bosses won't let you near the Blackjack tables again ;D Bob

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Substance Abuse and Mental Health Services Administration Washington, DC March 26, 2012 Cluster headaches inflict much more than just physical pain. With a nickname of “Suicide Headaches”, the resulting psychological toll speaks for itself. For this reason, a meeting was arranged with a director of the Suicide Prevention Department at the Substance Abuse and Mental Health Services Administration in Washington, D.C.. (www.samhsa.gov) SAMHSA works with various agencies (including the National Institute of Mental Health) to develop suicide prevention plans. They have created the National Suicide Hotline and also fund grants for research/education which help people *before* they get to the point of considering suicide. During this meeting Kim Robbins, Dr. Larry Schor and I were able to openly discuss with SAMHSA the devastating impact our disorder has on sufferers and the hopelessness many feel. It is a known fact that persons who endure chronic pain often experience depression and anxiety, which can lead to medication overuse, alcohol dependence, and substance abuse. We addressed the desperation those with cluster headaches often feel due to lack of effective medical treatments and that many feel forced into resorting to hallucinogens, which have been proven to effectively treat cluster headaches. With a suicide rate at over 200 times the national average, for many sufferers the choice comes down to two things - taking risks of treatment with illegal substances or permanently ending their pain. There are many good reasons to work with SAMSHA. They have a substantial influence with agencies involved research and are eager to work with us to educate operators of the National Suicide Hotlines. Likely, the people who answer these critical calls have no knowledge of cluster headaches, which could potentially escalate the distress of a sufferer who calls in – especially if they were given advice about a common migraine. Currently, we are involved in the development of a cluster headache fact sheet and discussion point materials which will then be disseminated by SAMHSA to the operators of the suicide hotlines. We ARE known as the “suicide headache” and there are groups that want to help prevent suicide. As you can see, our advocacy efforts have vastly expanded over the past year. Our goal is to help people with clusters and their families, and help doesn’t always mean finding the next medication. Much can be done to improve the quality of life for people with clusters while we wait for a drug or treatment that works. Since the time Clusterbusters was created we have relied solely on volunteers and free will donations to support our involvement in education, research and advocacy.  But, as you can see, there is so much work to do! We are speaking with people now regarding the need for grants to expand our education efforts, (educating the hotlines, doctors and the public), to create diagnostic tools, and to continue being involved in research leading to effective treatment programs. The best way to eliminate the threat of suicide is to eliminate the pain. Thank you everyone for supporting Clusterbusters. Very importantly, thank you for getting involved in helping other sufferers through message boards, support groups, and social media such as Facebook. We’re all in this together! Bob

Thank you everyone for an outstanding response so far. The great numbers of responders has our medical professionals excited. I know there are a lot of surveys out there. Thank you all again for taking the time to complete the survey. As to what was and what wasn't included; that was all decided upon with the advice of those medical professionals that are involved. One thing (among many) we are looking to see is how the "real life" numbers compare with "published" and advertised efficacy rates. Especially when it comes to clusters, much of the published rates and even the clinical trial data was taken from small sample sizes. This is the first in what will be a series of surveys that we hope will produce some very specific improvements in cluster headache treatment. Bob

A Cluster Headache Medication Survey ClusterBusters, a non-profit cluster headaches advocacy and education group, is now offering cluster headache patients the opportunity to participate in an on-line survey regarding the treatment effectiveness of the various medications and strategies used to treat cluster headaches. You do not need to have tried or used any specific treatment to participate and the survey is applicable to both episodic and chronic persons. This survey will include commonly prescribed traditional medicines (including abortive and preventative medications), various surgical procedures non-traditional medications to alleviate cluster headache. The link to the survey is below. Cluster headache is a rare disorder and poorly understood and there are very few studies/surveys regarding the effectiveness of the medications or treatments. The data from this survey will be summarized by a neurologist specializing in cluster headaches, will be submitted to a medical journal and will be used for presentations at medical conferences to educate other medical professionals. If you are a cluster headache patient, please complete the survey as your participation could potentially assist other cluster headache patients and medical professionals in determining the most effective treatment for cluster headache patients. Please note, it will take 25 to 40 minutes to complete this survey, as it is extensive. Once started you will be unable to save and return later, so please allow sufficient time to complete the survey in one sitting. Survey Link: http://survey.constantcontact.com/survey/a07e5lc5y7agyhhgd2b/start All survey answers and information will be held in strict confidence. For further information please contact us: Email: info@clusterbusters.com Web Site: clusterbusters.com Message Board: http://clusterbusters.clusterheadaches.com/

yep, those are mushrooms. Not the good kind.....not good for salad OR clusters. Psilocybe mushrooms, among other things, will "bruise blue" when you touch the stalk, as the psilocybin oxidizes. Even that does not guarantee they are safe. Its really tough "accurately" identifying mushrooms from a picture. Bob

Since the Advocacy category is a new one one the board, i wanted to point out that there is a new report posted regarding the Headache on the Hill trip, in the Advocacy, Events and Conferences category. Please keep an eye on this section as there will be a number of updates and reports coming soon. Bob

Washington D.C. “Headache on the Hill” March 26 -27, 2012 Headache on the Hill is an annual event organized by the Alliance for Headache Disorders Advocacy during which healthcare professionals, scientists, and patient advocates urge congressional representatives to increase NIH (National Institute of Health) funding for research on headache disorders. This year, Clusterbusters joined efforts with the AHDA to bring specific awareness to the lack of cluster headache research and the dire need for effective medical treatment. Out of a total of 62 participants (including 25 M.D.s), Clusterbusters is pleased to announce that at this event we had the participation of 12 cluster headache sufferers and supporters!  Our group was incredibly motivated and inspirational to all they came in contact with, including other participants as well as the congressional leaders they visited.  Especially inspiring was the fact that most were in active cluster cycles, yet they pressed on with determination as they navigated Capital grounds, rushing from building to building, attending scheduled appointments with their Senators and representatives. When you see one clusterhead pushing a fellow clusterhead around in a wheelchair making their way through protesting mobs and armed guards, you know that they were there to make a difference, and to be heard! The AHDA ran a very well organized event. In preparation for the Headache on the Hill event, they scheduled all appointments with state representatives, conducted an interactive informative webinar, and also held an interactive training session on the afternoon prior to our congressional meetings. During this session, the presenters explained congressional operations and put attendee’s minds at ease by informing them what to expect when meeting with officials. Handouts containing essential data and talking points to be conveyed to congress were distributed and discussed.  Our mission on the Hill was twofold: 1.URGE CONGRESSIONAL HEARINGS ON HEADACHE DISORDERS. We asked them to examine the personal, social, and economic burden of headache disorders resulting from the lack of adequate research and the need for effective treatments and specialty care. •NO U.S. Congressional committee has EVER held a public hearing on headache disorders. •Cluster headache is reputed to be the most severe pain that humans can experience. More than half of patients have recurrent thoughts of suicide. Cluster headache is as prevalent as multiple sclerosis, yet the NIH has funded NO research on it in more than 25 years. •Only 290 U.S. doctors are UCNS Board certified as specialty trained in Headache Medicine. •Headache disorders lead to more than $31B in economic costs in the US annually, exceeding the estimated annual US costs of epilepsy, asthma and ovarian cancer combined. •Over the past 50 years, only one innovative drug (sumatriptan), discovered and developed specifically for migraine, has been approved for clinical use after priority review by the FDA 2.Requested the Senate to RENEW RECENTLY CUT FUNDING IN A DEFENSE DEPARTMENT BUDGET that was for study of headache disorders.  As budgets get cut, it is vital that we speak up and make “headache” research a priority! Funding to study how fast and far shrimp can move on an underwater treadmill does not get cut, yet “headache” research gets cut early and often. The difference? How many and how loud the voices are that are walking up and down the halls of congress! Hopefully, this trip helped put funding priorities into perspective.  My personal schedule included the privilege of advocating with Aukosua Stokes, the manager of Public Policy from the National Headache Foundation. We visited all the senators and representatives from Illinois, including the office of Senator Mark Kirk who holds some very important positions in the Senate. Although Senator Kirk was unable to attend due to a recent stroke, his staff expressed definite concern regarding the neglect of headache disorders, which will be brought to the attention to the Senator.  Additionally, I was able to meet with all of the representatives from Virginia, the state in which Clusterbusters is incorporated. Over 150 representatives were visited and asked to recognize the need for further research funding and treatment options.  Along with all the facts and figures and personal stories we were able to present, some of us also used a short video clip of “Cluster Chuck” during one of his attacks. This was especially effective in getting the attention of the lawmakers. Thank you, Chuck, for always allowing us to use your video. It DOES make a difference! Most people in our group had written a short personal story of how clusters have affected their lives and the lives of their families. These stories made a HUGE impact in D.C.! We urge everyone to consider submitting their CH story, as Clusterbusters will compile these into a booklet form for presentation at future advocacy events.  These short stories (1000 words or less) are very moving as they help others better understand the impact cluster headaches have upon each of us and our families. You can PM me for details on guidelines. In speaking with the attendees during and after the meetings on “The Hill”, it was clear that we made people sit up and take notice. We ALL talk with people every day that say they wish they could do something. We were able to talk to people that CAN do something! It was empowering for those with cluster headaches to have their concerns heard by people that have the power to make a difference. People that can, and will, in the future speak for us to agencies like the FDA and the NIH and get people working for us. The president of the AHDA, Dr. Robert Shapiro, repeatedly thanked Clusterbusters for our participation. Concurrently, joining with those in the Alliance, gives everyone in the headache disorder world, a louder voice. We all know and appreciate the differences between clusters and migraine, clusters and trigeminal neuralgia, clusters and the other 140+ different headache diagnoses. But as many differences as there are, there are also many similarities. These similarities aid in research and finding effective treatments. Another stop we (Clusterbusters) made while in DC, was a trip to an agency called SAMHSA. This was not part of the H.O.H schedule but was a Clusterbuster, Cluster Headache project. This agency is the Substance Abuse and Mental Health Services Administration (http://www.samhsa.gov/).You may be asking why we would want to stop in there, but there are very good reasons to work with them. I will report on this meeting in a separate thread in this advocacy forum. Please watch for it to be posted as it will contain some very important and exciting information. As to the event as a whole, I cannot thank Cindy Reynolds and Kaboom from our Advocacy Committee enough for all their work in putting this trip together. A lot of time and effort went into organizing and getting a dozen cluster people there, in cycle, on short notice, and being prepared to make an impression. The coordination of something like this is very difficult and demanding. If you know what it’s like to set up a short trip for your own family, try setting one up for 12 strangers from all over the US! It’s difficult enough just to schedule meeting for coffee in the morning let alone a complex trip like this. Thank you both very much. I would also like to personally thank all the remaining members of the “D.C. Dozen” who spoke on behalf of all cluster headache sufferers: Louise Barham, Adam Barham, Larry Schor, Charles Reibold, Lee Markins, Becky Ulissi, Billy McConnell, Eva Nemeth, and Crystal Smith. Not only for what they did individually, but also for what they became as a group. None of us are paid lobbyists or do this for a living. It can be very intimidating to be walking the same halls that people like Lincoln, Roosevelt and Kennedy walked. The strength and determination that everyone pulled from each other was evident and it inspiring to see what people could do when surrounded by the support of a group. This was our first event with the Alliance and I can tell you that no one can be prepared to meet a dozen, impassioned, dedicated, ready to be heard, card carrying cluster sufferers. We DO make an impression. Its one thing when we all get together at one of our cluster conventions. It’s something else when a cluster convention arrives at someone else’s party. Those of us on Advocacy Committee could not have been more proud of everyone that came and represented people with cluster headaches. This event was a HUGE success in bringing awareness to the severity of cluster headaches and the need for more funding for research and education! Thank you to everyone who attended, to those who signed the Alliance for Headache Disorders petition, and to those who make financial contributions which enable us to continue our advocacy efforts. With the help of OUCH and other individuals, Clusterbusters was able to supply some of the attendees with partial scholarships, allowing those that would not have been able to make it otherwise, able to afford the trip. If you missed "Headache on the Hill" this year, we hope to see you next year! Bob Wold

LSD was discovered while Hofmann was working on migraine and cluster treatments. The first recorded "buster" story about treating migraines with psilocybin was long ago and again, a little like Hofmann's accidental discovery. The wife of a cluster sufferer (a migraine sufferer herself) was chopping up the dried mushrooms to prepare a dose of tea for her husband. She absorbed enough psilocybin through her fingertips to abort the migraine she was experiencing at the time, and kept them away for an extended time. Many people report this method helps a great deal with migraines and at even lower doses than cluster peeps use. Bob

Sasha and his wife have certaibnly done wonderful work that has changed the lives of many, for the better. I am attending a fundraising event in May for him. It takes all kinds of people with diverse ideas and opinions to improve the world and move forward. Shulgin is certainly one of those that moved the world forward. Thanks for posting, Bob

Clusterbusters is saddened by the recent announcement that OUCH U.S. has made the decision to close. OUCH was formed at a time when there was no organization to turn to for cluster headache support. There was no united voice. Born of an idea to get recognition and help for cluster headache sufferers when it was hard enough to just find ANYONE else with clusters, let alone find a doctor that had ever even heard of the disorder. Over the years, OUCH members have devoted thousands of hours of hard work dedicated to helping others. Because of their efforts, lives were changed...lives were saved. Everyone involved should feel proud about stepping up and making a difference. The hardest work is done when there is no network to rely upon. To change just one life for the better is an accomplishment of which to be proud. To change the landscape of how the suffering of a subset of worldwide human beings is viewed, treated, heard, and most importantly respected, is not only admirable, but heroic. Thank you all for supporting and improving the lives of so many. Bob Wold Clusterbusters

Shaggy, No one will ever chase anyone from this site for talking about migraines as long as I'm around. We all know how difficult it is for us to try to explain how clusters can effect our lives. It's not much, if any, easier for people with bad migraines or any of the other 150+ "invisible" headache disorders. As different as they may be, there are many neurological similarities. Future research funding will come in the form of grants to study "headache disorders". Many people here get both clusters and migraines. Many cluster people have supporters that suffer from migraines. That said, yes many people have good success treating migraines with psychedelics. Most though, use very small doses to do this. Migraines triggered by optic nerve disturbances are common. driving down a road while the sun breaks thru a tree line......fluorescent tubes (flicker), etc.... Cluster people should be familiar with optic nerve pain. Excedrin Migraine may work best as it is a stronger dose and has the caffeine to speed its actions. Just like with clusters, the earlier the better. You may want to try "small" doses of "busting materials". The old SPUT method (Small Piece Under Tongue) right after the Aspirin. Bob