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Dallas Denny

Episodic to Chronic....

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From the time that my CH's started in 1983 until my last cycle prior to the one I am in now I always had somewhat of a handle on when to expect a cycle to start.  Cycles were anywhere from 10 to 14 weeks with a remission period of 10 to 18 months.

When I was finally diagnosed with CH my neurologists told me that many people outgrew them in their late 50's.  So, when I didn't have the cycle I expected a couple of years ago when I turned 60, I thought maybe I had outlived the beast...yeah..riiightt....

I did make it PF for almost 4 years before the start of this cycle. The timecycle for me has always been 5 to 7 weeks from the first "twinge" to the start of the peak, with the peak usually lasting another 5 to 6 weeks with 6 to 10 hits a day.  For me, it has always been like someone "turned off the water faucet", it goes from the 6 to 10 hits one day to maybe only 2 the next, then a PF day followed by 1 hit, a couple of PF days and then 1 hit and the cycle is over.  Usually no more than a week from end of peak to end of cycle.

The difference in this cycle is that after having that predictable end of cycle week, the hits have now started up again and seem to be building in frequency and severity!

After reading so many peoples storys about becoming chronic with CH, I gotta admit to having some real fear right now.  And to top it off, my wife is a hospice nurse and she got a new outpatient last week with history of CH.  He was episodic til his late 50's then went chronic until at 68 they just stopped. He has now been PF for over 10 years.....well....as PF as a 78 yo can be I guess....LOL

I know the beast has his way with us in all different manners but was just curious about others experience that have gone from episodic to chronic.

Wishing for PFDAN's for all

Dallas Denny

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Hi. It took a particularly bad car accident to transition Michael from episodic to chronic. The headache pain made him so uncontrollable in the hospital (he's a big guy, he was breaking stuff, scaring the nurses, so they put him in restraints and gave him a shot of something they called "White Night"). It put him in a coma for 5 days. After he came out of the coma he was good - for awhile. Then they got bad and didn't stop. And they've gotten worse over the last several years. He's in bed all the time now except for a few hours at night - not that the headache goes away, he just can't stand being cooped up in his room 24/7. So, he gets up and we watch some TV together for a couple of hours. And then LSD came along (after an 8 month search) and for the first time in years THE HEADACHES COMPLETELY WENT AWAY, COMPLETELY WENT AWAY. AMAZING!! And then, after a totally wonderful 5 days of being completely PF, they came back. We're trying the r.c. seeds which seem to help and will be getting an oxygen setup ASAP. And then we'll wait until the government's paranoia eases and they devote the necessary time and resources into bringing psychedelics, both natural and artificial, and altered molecules of those psychedelics which produce no at least noticeable psychedelic experience to patients like bromo-LSD, into laboratories, hospitals and clinics for their widespread dissemination and use.

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Hello,

Outside of the next hit, I think going chronic is the biggest fear of all cluster suffers.(and rightfully so). My last cycle was very long indeed. I have never been able to outlast a cycle, it has always started with the twinge, to 3 hits a day two months later, then i get on the preds and the cycle stops. But last time they came back and it scared the shit out of me. That's when i found Bob, and i no longer had to worry about that. But you are not alone, and i hope your cycle will end soon.

                                     Bill

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