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Showing content with the highest reputation on 05/23/2021 in Posts

  1. I have decided to take the plunge and try Botox to try and get my migraines under control. I feel that if I can get my migraines under controll I will be able to put a cap on my clusters. The reason I feel this way is because I have migraines at least 3 times a week and I have never had a cluster event without having a migraine. I go for my first treatment Monday, I will give updates on what happens.
    3 points
  2. ....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....
    1 point
  3. I agree with @jon019. In the past when I was young, stress was a full time part of my life and the headaches seemed to be occasional and manageable. Once I worked my way into a quieter less stressful situation the headaches seemed to escalate. Psychological stress seems to make the demon less effective while physiologic stress raises all sorts of hell. (My experience) You will never ever be able to relate the pain and related issues to anyone in a understandable way. There is just no way to do it. Watching a video like the National Geographic piece featuring Dan shows the horror of an attack but most people don’t believe it. Dan is a wonderful human but no one is that good of an actor., It’s on YouTube search National Geographic and psilocybin. Because no one can really understand the unfair hand you have been dealt going to a meeting like Clusterbusters holds is an amazing experience. You are in a room of folks with whom you don’t have to explain a damn thing. Everyone understands so you can discuss coping, treatments and support without having to do any foundational talking. The meeting is in Chicago this year. Come if you can its much more effective than any therapy session.
    1 point
  4. ...hi mr w, ...stress or coming OFF of stress are CH triggers for many. during an ECH cycle, coming off any significant stressful situation was almost a guaranteed hit for me....staying stressed was (tho less so) preventive. my speculation that it's changes in hormonal (cortisol?) or other physiological systems. CH hits or cycle never seemed connected to my pscyhological well being..... no matter what that was.... .....CH changes...it just does...not necessarily indicative of any significant health changes. one thing it is NOT is a psychological illness....ya can't think it away...have never seen any reports or literature reporting so. just "well meaning" folks who tell us "it's all in your head".... .....i stopped years ago trying to explain my CH to anyone beyond: "REALLY bad, disabling headaches"....anything more and eyes glazed over. how to describe the indescribable is above my pay grade.... best jonathan
    1 point
  5. .....ummm....welll.....if you bust every 2 months you might just get that year....and more.... .....i used the triptan zomig nasal spray (5mg) as abort of last resort (carried on person at all times).....no fumbling with needles or injectors....a simple press and inhale. worked better for me than imitrex.....
    1 point
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