When I first began having clusters, I was in my 20's. I had no idea what was going on. They were very painful, but not the worst pain I'd ever experienced. I did run into the ER on multiple occasions, thinking I was having a stroke or an aneurysm... only to be given multiple diagnosis like sinus infections, TMJ, ear infections, etc. Usually, by the time I got to the ER and waited for my turn, my episode was almost near the end & I'd feel silly for being there. Finally, my doctor sent me to a neuro who ran tests and dx'd them as clusters and over the next years, I was a guinea pig for several different med's that were ineffective. As the years passed, the pain increased considerably from the episodes. Fortunately, I only get them in the fall and winter. I cannot even fathom how someone could stay alive as a chronic CH sufferer. My worst bout ever was 4.5 months straight of 1 per night, every night. I was darn near suicidal, myself.
So, all of that to say... that regarding pain, the more years I experienced them... the worse the pain has become. I, too, would LOVE to pass out during an episode. I am too busy pacing and trying to run away from it to do so. I am now pushing 50 this year. My doctor just presribed me 02 for the first time in 25 years, after I made the request. I was set up with 2 tanks and instructions this afternoon & will see how that works. I also have read several posts on the board from people who have bad reactions to Prednisone. I don't like taking it, but it is the only thing that I have found that can actually end a cycle. Works especially well if I catch it very early on. 60 mg x 3 days, 40 mg x 3 days, 20 mg x 3 days & "usually" they are gone... cycle over. I have been pretty fortunate the past few years,, but have found that I cannot mess with the Prednisone and "under-dose" or the right dosage will not work & I get stuck in a cycle. That is where I am at now.
So, pain is relative. We all have different pain tolerances, but if you have met the criteria... don't get hung up on the pain level! The day may come that you wish you could go back to your current levels. I know I sure do! In 25 years, I went from "This is awful, but tolerable" to "I'd rather have all 10 of my fingers sliced off, one at a time, than go through this every night!"
BTW... Hi everyone! I am new to the board!
Michelle
