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Everything posted by Psiloscribe

  1. Psiloscribe

    Legal fund

    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 proble
  2. 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 discussio
  3. 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
  4. 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 psy
  5. 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.
  6. 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
  7. 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
  8. 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
  9. 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. Thi
  10. 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
  11. 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 effor
  12. 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
  13. 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
  14. 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. Mic
  15. 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
  16. 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 goi
  17. 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 expe
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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 dea
  24. 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
  25. 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. Additiona
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