23YrSurvivor
CH.com Newbie
Offline

My CH is getting weaker, and I'm getting happy!!!
Posts: 13
Wyoming USA
Gender:
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Hi Tiffany-
As others have said, CH is different for everyone, including the pain you experience, and how it can morph to different areas, differing types of pain, and different intensities...I've had my share of "what the heck is that?!?!?!" moments when the pain would drastically change after a month or two of the same old thing, and cause me to rethink my pain management strategy and learn another new skill along the way. We're all wired a little different than the next.
My clusters used to be somewhat consistent and actually very predictable for the first ~18 years regarding #CH/day, #days/week, #months/cluster, #months remission, although each cluster started and ended a little bit different than the last. My clusters were farther apart the first few years for me, just like yourself. I have no idea when one will start or end now days, because I'm possibly on the outs with the beast...like he can't figure out what to do with me anymore, so he leaves me alone for the most part...maybe I kicked his butt too many times and he's trying a new strategy. Anyway, I get very short CH compared to years ago (3/4hr instead of 3-4hrs), very short clusters (1-2wks compared to 3-4mos), remissions of 12-24mos (instead of 3-4) and no time-frame when they will hit anymore...it's all random for me now.
I'm about 12 days into a cluster now, and have had PF nights, PF days, sometimes PF for 24 hrs+, sometimes 2/night, mostly 1, sometimes 2/day, mostly 1 or none...I just never know when the next visit from the beast will be...which makes it more difficult for me (thanks, beast) to figure out when I can plan on having "my time" to cope with it and not be caught in the middle of something important. So, I don't plan anything around CH since ~2008 when the "outs" seem to have started...I just wing it and see what happens from one day to the next, and hour by hour. But, it is far better than the first 18 years was regarding having all these PF months to enjoy...sometimes I don't know what to do with myself and all this lack of pain for such a long time!!! It's really amazing what you can get "used to", isn't it??? I really can't complain, thinking back on all those years of coping with CH.
Not to give you a horrifying picture of what CH can turn into, just a little insight as to how CH can change for some of us. Hope yours isn't a long-winded event like mine used to be. BTW, I'm a non-RX 23yr CH survivor.
All the best, and may you have PF D/N soon.
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