Posted by Susan (126.96.36.199) on September 01, 2000 at 23:45:41:
I am new to this site and have been reading through the postings. What is the differnce between o2 and oxygen? I have been a headache sufferer almost all my life. I've had migranes since the age of 2 up until the age of 25 when they turned into cluster. Now at 38, I still search for a doctor who understands me and my pain, I currently take prednisone and use oxygen with good results. (most of the time) Cluster have in some ways made me do things I would never dream of doing otherwise. Last time my clusters went away, I kept the oxygen tank and then lied to the company and said I turned it in. Now I just have to pay to have it refilled. Do I feel guilty, NO!!! I find it much harder to get oxygen than if I wanted to take some serious pain killers. My insurance does not cover oxygen for clusters but they will cover any thing else I want. DOESN"T MAKE SENSE TO ME. I have sent them a letter from my DR saying that it is mediically necessary for me to have it, he of course does not think it will help. I used to see a top notch Dr at henry ford hospital in detroit and he wouldn't even perscribe it for me, I grabbed him by the coat and told him if he didn't do something for me, I was going to end my pain MY way and it wasn't going to be pretty and he was going to have to clean up the mess. Like a good boy he wrote the script. The first time I tried it I cried like a baby. It was pure heaven. 10 minutes compared to 45 or an hour. I'll take the risk that it could scar my lungs, at least I can be normal within a few minutes and spend quality time with my kids. I do have a question ( yes there is an end to my endless jabber) Does any one carry a portable tank with them? Or does the high flow rate that we have to use make it senseless? Also my doctor just told me that I should be using a non-rebreathable mask instead of the typical. I said boy it would have been nice if someone would have told me that a few years ago. I wish i could find a place that really new how to treat clusters. I have tried many things in the past, including lithuim and another med that started with a c, turned me into to psycho mommy, I have never tried Imitrex and am very interested in the side effects, i need to have something with me if I'm not at home with my oxygen. By reading your messages on the board I am learning more and more and I would like to say thanks, it's so nice to know that I am not alone in this anymore. I have never been able to find any one else that has suffered with clusters, even my dr does not have that many patients with ch. And being a woman and being told that it's a "mans disease" didn't do a whole lot of good for my self esteem. Please forgive the length of this posting.
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