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Everything posted by Oaks

  1. great info @CHfather. I had the opportunity to meet with Dr.Goadsby a couple years ago, 10 months into a severe episode. I found him to be extremely empathetic to CH, but about as helpful as my other neurologist. He kept me on a 10 day steroid taper x1 month, and told me to take less imitrex. when I asked him about mushrooms, his response was, "what like those clusterbusters". He definitely was not a fan and probably why I have waited so long to try alternative treatments. I swear that half the battle of CH is managing my doctors. I wonder how many others on this site have also seen the same doctors, getting the same results.
  2. It really does sound like CH. The lingering headache is what we call 'shadows'. Make sure the oxygen prescribed includes a high flow regulator, otherwise it won't be effective. The sumatriptan is always helpful, but if the CH gets more frequent you will have trouble getting enough imitrex, or taking it to much. Lots of other strategies to learn from others can help make life a little less painful. All CH presents a little differently.
  3. Hi CJ, This sounds familiar and very much like CH. A couple questions. Is the pain only on one side of your head/face? How long did it last? And, What migraine pills did they give you? a lot of medication prescribed to CH is counter productive. just want to make sure you get relief and answers.
  4. For me it's a daily battle to get outside and take a walk. some fresh air and talking to the neighbors is always positive. it sounds stupid, but little things help. stay positive, it will pass.
  5. argh..I'd love a drink, but stay away from any alcohol during an episode. red wine is worst trigger for me. Last night, after three months without a drop, I had two beers. An hour later the shadows crept in for a short stay. I'm enjoying a PF break, so it will probably be a dry summer for me. no need to stir up any demons.
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