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Everything posted by cluster

  1. cluster

    "going legal" - methysergide ?

    Has anybody had (or ever heard about) experience with Lisuride (sold as Dopergin, Proclacam, Revanil) for cluster headaches? Please see here for more details: http://www3.interscience.wiley.com/journal/119540278/abstract http://en.wikipedia.org/wiki/Lisuride
  2. cluster

    "going legal" - methysergide ?

    No own experience, but looking at the literature ivDHE does seem to have a better efficiacy than Methysergide: http://www.ncbi.nlm.nih.gov/pubmed/1960057 http://www.ncbi.nlm.nih.gov/pubmed/15012663 Krabbe AA.: Limited efficacy of methysergide in cluster headache. A clinical experience. Cephalalgia. 1989; 9(Suppl 10): 404–405. (Sorry, no link, no abstract) Summary from this article: Methysergide (used at up to 12 mg/day) was beneficial without major side effects in 11 (26%) of 42 patients (16 episodic and 26 chronic). There was no real difference in treatment response between the episodic (25%) and the chronic groups (27%). In some other studies placebo did have better results than 25%. But you'll never know, until you've tried it yourself. Good luck!
  3. cluster

    BOL trial at the MHH

    If BOL would be available to be prescribed by a doctor he would definitely want to use it, I think. At the moment he is on Lithium again and considers Occipital Nerve Stimulation. btw: S5 gave me his permission to tell his story on a public message board, otherwise I wouldn't have done so.
  4. cluster

    BOL trial at the MHH

    Hi Flash, pleased to meet you and thank you for starting all this off about ten years ago! http://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml#FlashMethod Perhaps I should tell you about “subject 5” (S5) in the Hannover BOL & CH trial. S5 was not reported in Dr. John Halperns IHS-IHC-2009 poster presentation, because S5 had just started the BOL treatment when the poster presentation had to be submitted for the IHS congress. Dr. John Halperns IHS-IHC-2009 poster presentation (PDF, 3MB): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=BOL_Halpern_IHS2009-2.pdf You may have seen our friend S5 at the MH Hannover in the National Geographic video documentary: http://www.ninjavideo.net/video/47048 S5 was heavily suffering from CH and had about 5 to 6 severe hits per day. High dose corticosteroids didn't help, 960 mg Verapamil per day didn't help, Lithium was useless. He stayed in a specialised headache clinic for two weeks early in the year 2009 and they couldn’t help him. With the second dose of BOL in April 2009 he became completely pain free for a period of nine weeks. He only sometimes had some odd “cold attacks” without pain, just the side symptoms, during this time. He tapered of the Verapamil before the first BOL dose and didn’t use any other preventive medication. After the nine weeks pain free time after BOL his CH attacks started again and soon the hits were as often and as severe as before the BOL treatment. pf wishes, Friedrich
  5. cluster

    BOL trial at the MHH

    I take this to mean it had been chronic since? Yes, this is the word I wanted to avoid. Nevertheless, I did have pain free periods of more than four weeks during the years 2006 - 2008. But this is due to the verapamil working quite well. I still sort of feel "the beast" behind my eye and in my neck occasionally during such pain free periods, but no full blown attacks. The last time I reduced the daily verapamil dose was in spring 2006 and it did me no good. Febr. / March this year I considered to discontinue verapamil, but then decided not to do so because of the risk the cluster headaches might return.
  6. cluster

    help with a file format?

    If you have MS Office 2003 or 2007 you can perhaps use this converter.
  7. cluster


    Treasure Valley residents in July raised $84,000 in 27 hours to pay for deep brain stimulation surgery for one patient. The stimulator reduced his pain. But it was removed after he developed an infection. http://www.idahostatesman.com/localnews/story/959063.html What is the cost of Occipital Nerve Stimulation treatment for CH?
  8. cluster

    National Geographic Special

    IT RE-AIRS at 7PM ON Saturday November 7 + IT RE-AIRS at 6PM ON Tuesday November 10 http://channel.nationalgeographic.com/tv-schedule Please correct me, if I am wrong! pf wishes! Friedrich