Psiloscribe

Ok folks, a few facts and general thoughts. As a 501 © 3 non profit corporation, Clusterbusters can not legally be involved in this. Seems the government does not appreciate anyone using tax free dollars to defend people against the government. There are many problems involved in something like this and although there are many cases where people using schedule 1 drugs to treat medical conditions, have required legal assistance, these funds are usually raised once the need is apparent and it is for a worthy cause. Administration of such a fund would be difficult and there could be problems in determining who might be eligible for assistance. Who decides who gets help? Is it just someone busted for using psychedelics to treat their clusters? What if they are busted for additional charges? What if some of the other charges aren't the sort of thing that you'd like to provide a defense for? What if they got busted (no pun intended) for something more serious and clusterbusting is the least of their problems? I think it is a noble idea but not one CB could be involved with administering. If people could work out all of the other issues, there would probably have to be some sort of LLC set up. Bob

Bob, whenever you get around to writing me back concerning the PM I already sent you, I guess we can start having this conversation. If for some reason you did not get my PM, let me know and I will write you again. -Ricardo I got your PM when I was in DC, running through the halls of Congress working for ALL cluster sufferers and people with all sorts of headache disorders. Inspired to do so by the others that went along, most of which were in the middle of bad cycles. There appeared to be nothing to respond to. At least nothing that needed an immediate response. The only discussion on this matter should be how to specifically improve the website and in that matter, there should not be a need to intervene. The post that you just quoted from explained how I felt it best to proceed and we could move forward. In essence answering parts of your PM in public so everyone knew the best way to help us improve our product. This same post should have answered anything else in your PM that needed answering. It set forth a few guidelines that everyone can use to help us. Other than waiting for the promised constructive comments about the website that you said you would send to me, in the PM, it appeared to me that the next response would be coming from you, in the form of constructive, factual suggestions for updates. peace~out Bob

You are correct and it is rare. Especially if people bring in a research paper to begin the discussion. In our case series, even as long ago as that was, we found that doctors even went to the length of putting down their pens and not entering the conversations into the medical records to protect the patient. In other cases they would be more inclined to write down such things to protect themselves. One thing that was more evident than ever in DC was the frustration that all of our doctors feel, in not having things that actually help us combat this pain. Bob

Not only DO they check out our site but some of the most distinguished doctors and researchers, some of which you constantly quote as doing great work, helped write the pages on the site. I will make this suggestion one more time. Cut and paste into an email to me, the portions you have a problem with. Then, with each section, give me details, links and site specific information that will substantiate your suggestions. We will then present the changes to experts in the field and make any necessary changes. P.S. The warning sections were written by probably THE foremost expert on psychedelics and safety issues and has written countless safety protocols for clinical trials. Complete enough for the FDA and DEA. All that said....I'm happy to hear your thoughts, when you back them up with attributed facts. Bobw

And you made a number of assumptions about the study to make it fit your theories. The website was launched in time for the Headache on the Hill event. We know we have work to do and it will all be reviewed and like any good website, built and updated with new information constantly. I think this thread has veered off course enough and will be locked. Rest assured that the points made will be investigated and changes/additions made if found to be appropriate. If anyone has any constructive comments or suggestions for the website, please feel free to write to me at psiloscribe@yahoo.com. Clusterbusters is not just about treatments. We are also getting more involved every day in advocacy and education and the new website will reflect all these areas. This is a big job. Not just doing the work but keeping everyone up to date on what transpires every day. We want the CLusterbusters website to be THE place for not only cluster sufferers to go for up to date and accurate information, but also doctors, researchers and media. Considering all the areas we endeavor to present, this is a balancing act. There are many people involved doing, in my opinion, incredible work. This message board, as important as it may be, is but one part. Soon there will be a report here about our visit to Washington DC and the work done there by many cluster sufferers. Work that you can all be proud of. Bob

Yes I remember when purple became the new red. My Dad wouldnt let my mother wear red.....EVER. Look people.....First of all, yes, Teri is an old friend and does a LOT for cluster people and has for years. She advocates for cluster headache research in all the important areas and has for years. The purple ribbon is for headache disorders. If you dont have a headache disorder, don't wear one!! I promise, wearing a purple ribbon will NOT give you a migraine. All colors are used by multiple groups. If you're wearing a purple ribbion and someone asks you what its for, you're going to tell them it's for cluster headaches and other headache disorders. Right? The colors dont matter. The associations do matter. Bob

There is no "committee" per se and there won't be one. This website has been a living document for 10 years with scores of people helping to add content, make suggestions and help. Usually if someone has a suggestion or a comment or wants to "help" they usually write to either me or the webmaster or anyone else on the CB Board of Directors and discusses it. We ALWAYS get, review, discover and discuss new information from the message board ALL THE TIME. The discovery of LSD for clusters was done ON A MESSGE BOARD. Considering most of the above "topics" have been in the files for years, a note to discuss updates would have been nice. There are always changes going on in research (thats what research does, find new information) and we try to keep up. its "almost" always nice to have areas needing updates pointed out. There have been tens of thousands of hours of work put into the files and website. There will be tens of thousands of hours of work yet to come. As to ketamine, LSA and Tryptamines, there are many "differing" opinions..... We are looking at what "may" need updates. Anyone that wants to stop looking at our website until its accurate enough, feel free to send me your email address and I'll be sure to send you a "notice of update" and let you know it's been updated. Bob

The importance and vakue of education and advocacy is getting help to people before they feel the need to pick up a phone, and to help people that never decide to pick up a phone. There is a lot of work to be done. Bob

Didnt mean to be a thread killer. As far as a hotline, it isnt something that CB will be doing. There are lots of reasons why and some have been mentioned here. That is not to say we arent very interested in going about suicide prevention on orther ways. One example would be training the existing hotlines on cluster headaches. Then, just as cluster orgs refer people to preferred provider doctors, we can refer people to hotlines that KNOW what they are dealing with. These are things that we are working on and will be talking with agencies regarding these issues, in DC next weekend. This trip is not only about cluster advocacy but also our goals regarding education. Bob

Its not unusual to have some but not all the usual symptoms. And we all deal with them differnetly. Early on in the busting process it's sometimes easy to fall back into cycle when using anything that will disrupt normal neurological processes. Whether it be alcohol or prescription meds. Bob

I would like to thank in advance all those attending the DC meetings for the many sacrifices they are making in order to join us in D.C.. This is an amazing opportunity to bring awareness to cluster headaches and encourage more funding to be dedicated for research on our disorder.  In addition to visits with our legislator’s, Clusterbusters board members will also meet with other agencies that influence funding for medical research. There is something that those of you that can't make the trip, can do to help make the trip a success. With our various D.C. and future advocacy efforts in mind, I would like to ask each of you to consider submitting your personal story of how cluster headaches have adversely affected you and your family.  As you are well aware, it simply is not possible for others to understand how truly devastating cluster headaches are by merely relaying clinical facts or presenting data.  Our goal is to personalize our disorder by gathering stories to create a booklet for use to educate others about cluster headaches and the impact they have on our lives. This will be an ongoing project for Clusterbusters to build on, but is the first opportunity to contribute as an official “kickoff”. If you would like to have your story considered for print to be used during our visit to Washington, I will need it within the next few days.  If your spouse or other family members would like to write a story about how clusters have impacted their lives, your family life, these would be greatly appreciated as well. If you choose to contribute, please keep your story to 1,000 words or less. Aspects we would like to focus on are: ·      employment ·      family/social life ·      finances ·      Mental health - thoughts of suicide, depression, anxiety ·      Lack of knowledgeable doctors – inaccurate diagnoses, length of time to be diagnosed ·      Ineffective medications, side effects, cost of medication, insurance not covering meds These are all areas that different agencies will focus upon. We all know how many areas of life clusters effect. The more areas you touch on, the more agencies we can make a case of need. By submitting your story, you give Clusterbusters printing and distribution rights.  You may be as anonymous as you like or use your name. We are always cognizant of the importance of your privacy. I would ask you to please send your story to the following email address. clusterheadache@ymail.com Please do not post it here. Please do not send it to me in IM. I will need them by next Wednesady. 3/21/2012 for it to be included in the DC booklet. Its ok if you dont get it done by then. I know it takes time to write a 20 year story and condense it into 1000 words. Stories that come to us after that date will be collected and added to this document as we move forward. Please put "Cluster Story" in the email header. Thanks very much everyone. Bob

Rest assured that this subject is near and dear to the Clusterbuster Board. As stated, there are problems with a hotline but there is much to be done. We are meeting with additional agencies in DC next weekend and this subject will be an important one. Much more on this later but the first thing some of you can do to help us out is to help with what is being asked for in the thread "Help us out in DC and in the future" which I will be posting as soon as I get done posting THIS one ;-) Bob Thanks for a great thread

Hey Jammin!! great to hear from you. Yes people just to confirm, Jammin here, is one of the original busters and the real deal... I do think this would be a wonderful destination, meet 'n greet. I do need to get down there and "officially" crown Bomba as an honorary buster. Bob

Over 10 years ago, the first website describing the treatment of Cluster Headaches using psychedelics was launched. Since then, there have been several updated versions. Dozens of people have been involved over the years, helping with designs and adding their input and untold hours of work and dedication. This has definitely been a project built by the community. Tonite we are launching our latest version http://clusterbusters.com I want to personally thank for myself, and for Clusterbusters, Michelle Adamson for her years of work building and maintaining the site up to this point. Michelle, you have been an important and invaluable part in any and all progress we've made. As to the new site, i want to thank Doug Wright and Chris Hannah for all your hours of hard work putting this new site together and getting it launched. Not only beautifully done but also in it's quality look and content. It will definitely help take us to the next level. Thanks also to those that helped in creating this web site, for their reviews and comments. Still, the community continues to reach out and work together. Thank you all. Enjoy the new site. Feel free to pass along the new site to others and keep an eye on it as we continue to add content. Again... http://clusterbusters.com Bob

FWIW, I've been following cluster groups and been in contact with.....countless numbers of people, and I can tell everyone that this has been a BRUTAL year for more people than usual. So, if you're having a tougher than usual time this year, you're definitely not alone. Bob

The deadline is coming up for registering. We've had an incredible and inspiring number of people step up to make this trip. Thank you to everyone that is going and helping to make an impact, and a loud statement by people with clusters. It's one thing for people to come to a conference, full of people with clusters, to meet and discuss our lives. It's something else for us to come out of our hiding places and meet people that don't understand us, and try to change that. If you were thinking of going but may have thought you'd be on your own, we currently have 16 people planning on going to Washington DC. A big thank you to KaBoom and 1961Mom for spearheading this trip and working tirelessly to coordinate the trip. This is not an easy task and they've done an outstanding job. You can all be proud to be represented by them. Thank you both for not only doing all the work, but for doing it in such an impressive way. We are making ourselves known and respected in the world of headache research and advocacy. We've already had the remarks of two cluster sufferers read into the congressional record this week. If you were thinking of joining us, we'd be happy to have you come along. I'm buying the first round!!! (Shirley Temples for anyone in cycle lol) Bob

To everyone new..... If I may. I suggest you read the files we have on this site. There is a lot of information you need to know. Warnings, contraindications on other meds, how, when and where to dose. This is a treatment that may help you for years to come and it should be worth the time it takes to learn the facts. I understand any one's exuberance in wanting to find a quick fix and answers. Clusters make us all anxious to find relief. Clusters are complicated. Treatments can be complicated. It's a lot more than, "how much do I take?" There are years worth of research, personal experiences and much more that has been important enough to record and share. I didn't follow written instructions when I tried this almost ten years ago and I paid for it. The treatment has been refined over the years to try and eliminate as many risks and pitfalls as possible and to increase your odds of success. This is NOT a "drop acid and cure your clusters" treatment. Respect the seriousness of the disease and what it takes to beat it. Respect the treatment and what has taken hundreds of people like those helping in this thread, to refine this treatment into a safe and effective tool in battling cluster headaches. Bob

Hopefully they put a good spin on it. Thanks very much to Sean for agreeing to be interviewed. Bob There was an accompanying article http://www.thebostonchannel.com/r/30417883/detail.html

Hey Tim, Its great to have you back with us. Been a long time. Lot's of the old-timers still around. Then there are some people here that are just, really old. Bobw

Thanks Ben, Great stuff. I really appreciate your keeping us posted on these things. Time to come back to the States for a vist....You should think about Vegas in the Fall. Bob

Glad you stopped in Buzz. Good to see you here. Lot's of good people here that you dont have to explain yourself to, before talking about what you're going through. Bob Who will talk to the conference scheduler to see if we have time for a "Cluster Tats on Parade" show. LOL

WCVB-TV in Boston is doing a story on Clusters/BOL etc. Anyone nearby interested in being interviewed? You dont "need" to be busting. You Dont need to be in cycle. Anyone interested, please send me a note ;-) Bob

I want to thank everyone involved in making this happen. Of course major kudos to Dan and his family. Working with Nat Geo and the producers on this has been a great experience. The producers took this story and cluster headaches in general very seriously and were interested in learning much more than they needed to shoot this. A great bunch of caring people. Having dealt with the media on this for years now, that is not always the case. There were a couple of reasons this film was made. One was that Nat Geo took an interest in our story and cared about the lives of the people that deal with clusters. Secondly, the first film they shot which detailed our work with BOL, was one of the most viewed specials hey had. The followup interest was inspiring them to tell more of the story. I would ask everyone that can, please watch the show. Please ask others you may know, to watch the show. The more TVs tuned to this show, the more the likely hood that NG will return to us for followups. thanks, everyone, Bob

Thanks very much Batch. I plan on being there as long as it takes to meet as many people as I can that need to hear from us and can do something to help. I'll be in touch when this gets a little closer and I have some sort of schedule set. Thanks again Bob

As discussed at our conference in September, Clusterbusters will be joining with the Alliance for Headache Disorder Advocacy group during a trip to Washington DC. The date of Headache on the Hill this year is March 26 and 27th, 2012. This is the 5th year the Alliance will be going to Dc to fight for improved research on Headache disorders. This is the first year that Clusterbusters will be taking an active role in the project. The goal this year will be to push for senate hearings on the need for increased funding for headache research. The current budget numbers are pitiful. Additional information on the Alliance can be found here: http://www.allianceforheadacheadvocacy.org/ Please consider joining us in DC and raising some....awareness. A committee has been formed and you will be hearing more details from them soon. They will be co-ordinating the trip. We are working closely with the Alliance and you will also be able to get additional details on their website (above). There may be scholarships available to help people with costs so if that is something that might help get you there, stay tuned. There will be training sessions in DC prior to meeting with the representatives and all appointments are set up in advance by the Alliance. We will be looking for people from as many states as possible. People will be paired up with others from your state and if possible with doctors/researchers during the meetings. I hope to see a lot of you in DC and we'll make some Cluster noise!!! Bobw