Jimmy J
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Posts posted by Jimmy J
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On 6/5/2022 at 1:15 PM, CHfather said:
In this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a section toward the end (headed "Treatments" without O2...) about things you can do when you don't have O2 or other meds. Most are variations on things that have already been listed in this thread, but maybe worth a read. In addition to what's there, many people find that sleeping more upright (e.g., in a recliner, or at a table with you head on pillows) can reduce the frequency or severity of nighttime attacks. (If you look through the reply posts in that thread, you'll see a couple of other things that might be worth trying.)
Since you are new to actually dealing with CH, you might want to look through that whole document. It also contains some tips about how to make it more likely that you get an O2 prescription.
Keep us informed . . . .
Thank you.
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Hi All, going through a rough time. The last cycle I had was 4 years ago and I had very little knowledge of what was happening to me. Extremely painful attacks every few days then one day they stopped so I figured that was it and went on with my life. Ignorance is bliss right?
This cycle started about a month ago and is hitting me at least 2-4 times a night (sometimes during the day) for about 30 minutes a pop. As you all know it is hell. I have no abortive treatments available. My main coping mechanism has been pacing and moaning. It gets really loud at times and I’m surprised that the neighbors haven’t called 911. I have tried ice on my head but sometimes that seems to make it worse. Last few nights I have used ice in my mouth and held it against the roof which helps a bit.
I’ve been on a D3 regimen but only a few days in.
I have a Dr’s appointment tomorrow morning and I am hoping to get prescribed o2.
Any suggestions on coping with these attacks till I get on o2? Any suggestions on what drugs my Dr. May want to prescribe that will do nothing or have bad side effects Tha I want to stay away from?
Any advise is greatly appreciated. So glad I found this group!
Jimmy
First Cluster in Years - Trying to Get D Levels Corrected
in General Board
Posted
Trying to get lab work done for d3. My pcp says that because of supply chain issues the vials needed to perform the test are unavailable. Is this an issue for anyone else?