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Everything posted by Psiloscribe

  1. Psiloscribe

    Went for ONS trial review today

    If your attacks fit a cluster headache diagnosis, such as same frequency each day, same time, same length of attack, it most assuredly wouldn't be caused by a physiological problem other than a screwed up hypothalamus. Bob
  2. Psiloscribe

    Re: BOL article

    No secrecy. This was hashed out years ago. Seems to be being brought up again for some personal agendas. Agendas that certainly do not include helping cluster sufferers or helping move forward on better treatments. Bobb is correct in that Doblin has no horse in this race and has dedicated most of his life to researching compounds to help people. bob
  3. Psiloscribe

    Re: BOL article

    Up to you if you want to remove it. I didnt because I didnt want it percieved to be censoring anything or hiding anything. I decided today that I will write a complete history of all the "facts" as it needs to be done. Especially since I've already had two heart attacks and, well......truth does need to be documented. Bob
  4. Psiloscribe


    About 10% of people with clusters have nausea and/or light sensitivity. Its one of those things that complicates diagnosis and why many of those 10% get a migraine diagnosis early on in the process. When she sees the Neuro on Monday, I would get out the other symptoms before the nausea and light sensitivity so the doc doesn't immediately zero in on migraines and not even hear the cluster symptoms. Bob
  5. Psiloscribe

    I've had enough!!

    Its always best to discuss this stuff with your doctors. They know your health history and any risks that might pertain to you. Psilocybin is known to elevate blood pressure for about a 3 hour period. Most of the studies that have been done were studies that gave participants large doses where hallucinogenic effects were desired. From the ones I've seen, blood pressure went from an average of about 125 over 75 to about 140 over 83. Plus or minus a few points. Bob
  6. Psiloscribe

    Matching contributions

    This is never a good thing for an organization that relies upon donations and the good intentions of others. There is a donate button on the bottom of these message board pages but for some reson they don't always work properly. Best thing to do is go to our website http://www.clusterbusters.com/donations.htm and donate from there or mail your donations to: Clusterbusters P.O. Box 574 lombard, Il 60148 Thanks Bob
  7. Psiloscribe


    I try to keep all the fundraising stuff in one area but thought it was a good time for a reminder in the general section. I know a lot of people will be doing some shopping online and a great way to raise funds for CB is to use the IGive option. All the details can be found in the Fundraising forum threads but the link to join is http://www.iGive.com/Clusterbusters This site also lists all the available coupons for the stores so you can find some great bargains without waiting in line at 3am ;-) Thanks, Bob
  8. Psiloscribe

    Happy Thanksgiving

    Happy Thanksgiving everyone. Bob
  9. Psiloscribe

    Help with the "How To" project

    Just so everyone knows, this is an official Clusterbuster project that Tommy has undertaken for us. For those that know know him, Tommy is an original Buster so has been with us from the beginning. He is a Clusterbuster Trustee and has been our unofficial historian, helping us track data and build our files. Any help you can give him/us on this project is greatly appreciated. Bob
  10. For those of you that would like a reason to pick up a copy of the April Playboy, plus actually read an article......here's your chance ;-) A good article on psychedelics and medicinal uses, including a mention on our cluster headache treatments.... http://www.maps.org/media/playboy_the_psychedelic_renaissance_CT_0.pdf Rick Doblin is a good friend of cluster headache sufferers and has helped us a great deal in making progress in our research. Bobw
  11. Psiloscribe

    2 quick questions if you dont mind :P

    It doesn;t make much difference. They tell you that because it can make you tired. if you're having night time hits and you're hoping this might help, I'd take it about an hour ahead of bedtime. It is considered rare but cycles can switch from one side to the other during a cycle. It can also change sides from cycle to cycle but but most people stick to one side or the other for the most part. Bob
  12. Psiloscribe

    magic TRUFFLES

    Hi Val, First off, congratulations on pushing theough the detox. We know it isn't easy. It can be even harder then breaking an addiction to drugs or alcohol in that it has elements of both physical and mental hurdles to overcome. Yes, some people are lucky enough to have similar results with only a dose or two. Congratulazioni. Goda di. Bob
  13. Psiloscribe

    The future of BOL and Entheogen Corp.

    Thanks very much Matty Best way for dinations is to go here : http://www.clusterbusters.com/donations.htm if you want to donate online click on the donate button. Or checks can be mailed to Clusterbusters P.O. box 574 Lombard, IL. 60148 if you want it to go to BOL research, mark that on the donation or check. Bob
  14. Psiloscribe

    Why the hell not?

    Good thread topic and discussion. Thanks to all. The original theory behind the usual dosing strategy is based in several areas. It begins with the thought that it is the "whack" the dose provides that breaks the cycle. One of the first analogies, similar to the snow globe, is that our hypothalamus is like an old tube radio that goes out of sync and needs a "whack" to regain its tuning. Re-dosing the next day usually doesn't produce this "whack" so its not only wasting medicine but prolonging the next dose that will provide this whack to the system. Over the years, many people that don't have complete results from standard dosing have tried some different techniques. One that I do suggest for some people is re-dosing when the first dose begins to wear off to increase the length of the "whack" so to say. It does work sometimes. Some people have reported using repeated dosing over several days with limited success. In most cases this does just waste medicine and for most people its hard enough to come by as it is. It is one way though of enabling (most) people to increase the size of the dose without increasing the hallucinogenic effects. It is something we have looked at in our study design. One theory behind repeated dosing is to keep the receptors bathed in the hallucinogen to try and retrain them to "play nice" and work properly again. I've tried it and although I was pain free while on the doses, the clusters would return. I'm one of those that need the "whack" or two. The success rate for the standard dosing is still very high. It would be wrong I think to suggest that anyone try a different method to begin with. Until we can compile similar or better numbers with a different strategy, I feel everyone should start with standard dosing. If that doesn't work it doesn't hurt to try new methods. Anyone that does should report their results. It may be that we can do better, which is why we are all here. Bob
  15. Psiloscribe

    I feel very upset, cannot sleep!!

    Roger Waters comes to Cali in December. Sir up front and he'll loosen up those bones!! Or at least leave you comfortably numb!! Bob Rock on Ting....you are in charge of your happiness in life.
  16. Psiloscribe

    I feel very upset, cannot sleep!!

    I'm very sorry Tingling, Official words from a lawyer always have a purpose and the truth or how those words affect people have little to do with that purpose. Bob
  17. Psiloscribe

    opinions wanted on 2 subjects

    02 as a preventive has been studied and in general doesn't work. Safety issues aside, using low flow with a nasal canula just won't counteract the changes caused by an oncoming attack. Bob
  18. New Scientist http://www.newscientist.com/article/mg20727764.000-psychoactive-drugs-from-recreation-to-medication.html "Meanwhile, in a study at Johns Hopkins University in Baltimore, Maryland, funded by the Beckley Foundation, Roland Griffiths and colleagues have seen positive results in their study into the use of psilocybin as an aid to psychotherapy to treat tobacco addiction. At Hanover Medical School in Germany, a team led by Matthias Karst has been investigating whether bromo-LSD - a non-psychoactive form of the drug - can be used to treat painful cluster headaches." Bob
  19. Psiloscribe


    You go visiting people during a cluster attack? Are you using imitrex tablets? If so the injections and nasal sprays don't take nearly as long to kick in...FWIW Some steroid injections can last longer than oral tablets. With the increased effects on your system come the increased side effects. There is no research that shows steroids break cycles. Almost every cluster sufferer here will tell you from experience that they can give you a short break but the cycles return and oftentimes stronger than before. Bob
  20. Psiloscribe

    Altitude Effects

    Quick changes such as air travel can trigger clusters, if you are in cycle. That said, flying to and landing in Denver at its altitude might be one of the safer places to land IMHO. Physically speaking, you should be good to go. On the spiritual side, don't let cluster fear guide your life any more than necessary. Its one thing to pass on a dinner or movie. Its another to pass on a trip that leaves plenty of opportunity to enjoy life. Our best memories are only moments in time. Its not usually "that week on the Islands." Its more likely to be, "that moment on the beach on the island." Go and find that moment!! Bob Send us a postcard
  21. Psiloscribe

    Is CH genetic?

    One gene down and 24,499 to go. Just happy they are looking!! Bob Thanks BobB
  22. Psiloscribe

    Why do we stray when feeling well?

    When people are in cycle, the only pain that comes close to, or exceeds the cluster pain, is that which we feel from the lost time with our families. The shared goals and ambitions and family obligations we feel we've fallen short of holding up our part of the bargain. When the cycles end, the first thing we want to do is make up for lost time. Reconnect with the spouse and kids we've hidden from more often than a squirrel hides nuts. It takes time to repair some of the collateral damage a cycle can do. No one should ever feel bad about taking care of business at home when a cycle ends or when a chronic gets into a low cycle and can get out and breath some fresh air. That said, one of the most important aspects of a support board like this is for people to be reminded that others do get better. Reminded that cycles do end and you will be able to get to one of those soccer games. So, we're always happy to hear from people that are feeling well and making life work. Bob
  23. Psiloscribe

    My wonderful daunghter, and CH....

    Hi Ting, yes she is! As Matty said (thank you Matty) you should be very careful about how you proceed and what you put into that pure child of yours. I know you are very careful and thoughtful in these matters and you will make the right decisions for her. I would be very careful about using anything to treat her headaches at this point of her development. Yes I would be careful of even using oxygen. Neurolologically speaking she has pretty much completed physical growth but it continues to make adjustments based upon environmental factors. These are some of the things we can have an effect upon. That said, you are not responsible for your clusters and you aren't responsible for whatever headache diagnosis she may or may not end up getting. And since we're all "family" here, we are all responsible for her care. Some children her age have been diagnosed with clusters. I have seen some kids go through cycles and have them stop, never to return. I would get in to see a specialist as Matty suggested, asap. I would also first try the water treatment. This is a very large increase in the water intake. Even with this though, you (and everyone) needs to be careful. It isnt discussed much but you can drink too much water. I would try having her drink ice water if she can, during an attack. Personally I think this might be what is behind the "waterX3" treatment. Most think its the increased water that helps. I think it may actually be cooling the vagus nerve by drinking cool/cold water. When she gets an attack, see if you can get her to do some sort of exercize. Make it fun if you can....maybe running in place with you?? See if she can beat you to the "Dark Side of the Moon" ;-) Put a frozen bag of peas on the sore "spot" on her head. I would begin a headache diary. I would not involve her in that. She doesn't need to be looking forward to the next headache. I would also keep track of whatever symptoms she mentions. I would not suggest any symptoms or ask her if she feels this or that.....She will be the one to best describe when and what she feels. Tell her that she, as you, has friends all over the world pulling for her. 8-) Bob
  24. Psiloscribe

    My House

    poet (p[ch333][ch8242][ch601]t) noun 1.a person who writes poems or verses 2.a person who displays imaginative power and beauty of thought, language, etc. Deny it if you must but it's always healthier to accept and take measured pride in one's own qualities and abilities. Bobw
  25. Thanks for this. Very interesting stuff. Bob