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ClusterBusters

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Showing content with the highest reputation on 08/28/2019 in all areas

  1. 2 points
    Thank you for that- I look forward to reading/learning more from the experiences that have been shared on this forum. I had the chance to speak by phone with Bob earlier today, and he seems like a great advocate (one with alot of insight and years of experience). He shared some really interesting stories with me. Some we laughed about, but others left me feeling really frustrated over the unique challenges faced by the CH community (like about those who lack access to sustainable prophylactic options and also score high on tests for PTSD, or elderly CH patients who struggle to access oxygen as a treatment). Following our call, Bob told me he would put me in touch with the clinicians at Yale running a CH psilocybin study, and that he would introduce me to the individual out here in California who I think Bob said holds the BOL-148 patents and is trying to put things together for some preclin efforts. I look forward to helping wherever I can and will post on the forum as things unfold. -J
  2. 1 point
    CH is an odd beast. Any area in that quadrant of your head can be subject to pain as the Trigeminal Nerve serves as the major nerve for that side of your head and face. So, a lot of territory to hit. Just a bit to keep in mind. You can have low level Ch's or major ones. You will swear that a particular tooth is killing you. It gets removed, and the pain remains. You can get an ear ache, sinus pain, jaw pain, and on and on. That is why so many have had teeth pulled and sinuses reamed out surgically. So, the pain can be very different at different times. I had a cycle once where every hair follicle in that quadrant hurt constantly. Shampooing was a real bear for about 5 months. Most experience the worst pain at the back of the eye. Others get it in the temple. For me, it is almost always the temple. It feels like my head is being squeezed in a vice while a railroad spike that is red hot is pushed into my head through my temple. I do think that for many it is constant pain, not pounding or throbbing. Personally I started out Chronic, but with low level pain. Then I got a long reprieve. They returned episodic and blew the top off the Kip scale. A cycle will begin with one hit per night and quickly, a few weeks at most, ramp up to four every night. That takes care of the whole night. They last 2.25 hours untreated and there is a 15 minute break between hits. I sleep from 6am to 8am. After about 6 or 7 months I am not a very nice person. Not mean, just no laughter left. So, I tell off traffic and such. And avoid people when I can. CB is the reason I still can laugh and live. There are ways to manage it so you are a real person again. ATB
  3. 1 point
    BKP -- Maybe a triptan nasal spray will work for you. Or would you feel better without the self-injector, if you were just injecting yourself with a syringe? That can be arranged.
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