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Everything posted by catlind

  1. The cluster stories, are they the reason you wanted us to give you a write up about our experience at HOH Bob? Just wondering, cause my story is kinda rather mixed in with a bunch of other stuff in the email I sent to you LOL. Is there no where online they can be read? And do you still have the old compilation of cluster stories Bob? The ones you and TommyD et al did up for the 2003 OUCH convention? I've got a copy of both the stories (posts really from ch.com) and the evidence compilation as well. Wondering if I should take the many items I have and start a CB Museum of Progress hehe
  2. Not only is there immeasurable triumph in the accomplishments of the group as a whole, both AHDA and CB, but anyone who attends might just discover that they experience a personal triumph as well. Many of you know me from days of old, many of you have never heard of me, but my story is the same as most of you, with one exception. I used to be extremely active with CH advocacy, until in 2008 while getting a glass of water at my kitchen sink, I fell for no known reason, with no warning - a fall from a height of 5'4" and regained consciousness to the life of a Traumatic Brain Injury patient. It sidelined my life, and my passion - CH advocacy - but then I learned something that is, as yet, not common knowledge among either patient or practitioners groups - through the DoD program - CDMRP Congressional Directed Medical Research Program - my own doc has been working with the vets at Ft. Bragg who have returned with Post Traumatic headache, as a result of post concussive blasts or traumatic brain injuries - and of those afflicted, nearly all have become chronic migraine and/or chronic CH sufferers. There's so much we still need to know. This lit a fire in my soul, and although I have not traveled more than an hours drive on my own since 2008, in April, I drove 7.5 hours, by myself, after much much anxiety and despair, so that I could attend HOH and contribute my personal story to the cause. It was my personal triumph - I overcame not only CCH, but PTSD/Post Traumatic HA and the multitude of obstacles and disabilities that a TBI patient suffers from. I never could have done it without the support of everyone involved, but especially from our esteemed leader and event co-ordinator. I'm proud to say I was a witness to so many of our contingent achieving such amazing gains and results. My hats off to you all - I admire your constitution, compassion, commitment, dedication, determination and downright stubborn streaks to ensure that your voices are heard I add this bit of trivia to this thread, to encourage any and every member to try to attend HOH, and to get involved in every joint venture project that comes our way - with numbers we have great power, and we WILL change the world. Cat
  3. catlind

    2009 Clusterbuster Conference report

    This is something that Dr. Finkel of the Carolina Headache Institute is using on a group of headache sufferers, althogh his initial focus was on soldiers at Ft. Bragg that suffered TBI's (traumatic brain injuries) from post concussive blasts, and now exhibit headaches that 'mimic' CH, yet fulfill the IHC criteria, and has been quite successful. He's expanded this use into his practice, and I am one of the patients that he is trying this treatment with, and I must say, so far so good as far as helping to get to a 'stable' brain chemistry allowing other possible treatment options to help. I had dosed prior to my appt. with him, so it's hard to say which was the beneficial factor, but after a month of treatment, things are still going quite well and there is a great deal of hope that I have found someone who is willing to go outside the mainstream to find a solution. Cat
  4. "I suffer from a rare neurological condition known as trigeminal autonomic cephalgia, commonly called clusters because the painful attacks occur in groups or 'clusters'" No need to use the word headache at all. TAC is what they are and that's the official name by the IHSC. Cat
  5. catlind

    Privacy, Danger and Paranoia

    Bonkers, see my username? It's my real name. I'm here for INFORMATIONAL purposes. Period. There is no law anywhere in this nation or Canada that I'm aware of that prevents the publication and dissemination of information. All great discoveries come from someone doing something either unorthodox or illegal. Imagine - who was the first dude that licked that toad??? I think it's safe to say we are of non interest. Too many very very respectable medical researchers and practitioners are following the research and doing something about it with LEGAL blessings. We work to push the good fight forward so there is a legal alternative for every sufferer. If they wanna put me in jail for supporting that, then there are 100's of others going to be joining me. JMO Cat - who has nothing to hide