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Showing all posts by "gigi"

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Posted in Not sure of diagnosis on 09 Mar, 2014 - 4:43 pm

Hi Vaughan,
My opinion only, from my experiences with CH.
1. I find they are always the same inhumane intensity.
2. Mine are always nocturnal, starting usually around 7-8 pm
3. Yes, my neck and shoulders are like rocks, I try to massage them to try and loosen things up.
4. I find my episodes are continual during the night, just get rid of one and back in 1-2 hours
5. I think everyone tries to find what works best for them, I haven't had the warm shower as I generally feel overheated in the face and use continual cold face washers.

About 2 years ago, once I finally knew the name for this evil condition, I found on a UK website, that oxygen therapy works because their research has found that there is a lack of oxygen in the blood.
Anyway, I gave it a go and to my relief it worked instantly and I did not have another CH episode until now.
Yes, I have ordered in the oxygen again and although I still have the dreadful bouts, usually 10 -,15 minutes on the oxygen is all it takes to stop it in it's tracks.
I may have to do this several times a night but it is a relief to know it is not going to go on and on and on.
I also found that Relpak works but only once the CP epsiode has started can you take it, it won't stop it from coming on.
I have been told that the oxygen therapy doesn't work for everyone but anything is worth not suffering mate, give it a go.