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Posted by deb e ( on March 09, 2001 at 07:24:00:

hey all...,
i say i'm new, that only applies to this site, wish i could say i don't know what it's all about but ...
i've been 'blessed' with clusters 25yrs., am now 45 and i've been willing to give this particular 'blessing' up for a long long time now.
being female brought every possible diagnosis except clusters, my father suffered from these for his entire life so does heredity play a role? always said i was born the wrong sex!
THEY started at 21yrs.old, right after the birth of my 2nd child, i now have 5(some of us don't catch on to quick)and have had remissions that have lasted up to 7 years.
went the traditional doctoring route and took all the drugs without sucess, one summer i had so much Vicodin in my system i missed the whole dang thing and it became fall without my realizing it! the doc finally handed me the PDR on one visit and told me to find something i thought may work. is this not cool or what.
i had read in the early 90's in a medical journal of the Danish using oxygen to treat clusters with some success, asked to give it a shot and used it for 2 yrs. with the result being, if i got to it in time it did lessen the severity and length of the war dance in my head but ya' gotta' be close to it or travel with a small tank everywhere. getting the insurance co. to go along with it as a treatment is a hassle though.
i just came off my remission of 7 yrs., had nearly forgotten how bad they were in fact. last week THEY came unannounced at 1am and i was instantly reminded of just how fast i can jump from bed to freezer to grab the ice and lay it on my neck and head. this is the only remedy that doesn't include drugs i have found that works best for me. i still pace, hit my head, rock and roll for up to an hour, even sat outside on the steps nearly butt naked to cool down in 20* weather a couple of nights ago. if the body heat goes up to high i go out... guess clothes are optional.
SOOO, that's the condensed version, i am tired of hearing how people know what it is like to have headaches like these... they don't but i know you all do and that alone is helpful. last night was what's the norm.., sleep an hour and get up for 2, back down for 1 get up for however long ... easier and safer to just stay awake. you all tell me how this works on here and i'll stay tuned :) THANKS deb

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