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Everything posted by Michelle01

  1. Michelle01

    Looking for help

    I've been suffering cluster headaches for 10+ years, usually, November/December cycle begins and ends in the Spring. I had tried EVERYTHING to deal with them & finally my doctor said "Let's try supplemental oxygen for this!" He prescribed me a tank & when I feel a cluster headache starting up, I turn the setting on the tank to 8 & breath the oxygen through a facemask for 5-10 minutes and the cluster is gone! It never gets to the point it is unbearable because the oxygen knocks it out before it gets to that point. Why did it take over 10 years to get to this point and why don't all doctors do this? My health insurance was paying almost $200 a month for the supplemental oxygen with a $30 copay to me. I would have paid ANYTHING for this years ago! A local oxygen retailer signed me up as a private pay for a total of $10 a month for the rental and $5 per tank. (Now we know why insurance premiums are so high too!!) Just thought I'd throw this out there... maybe it could change your life too!
  2. Michelle01

    Pain level

    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