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Topic: CH Patterns after remission (Read 419 times) |
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ChristineL
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Before I went into remission for 12 years I was Chronic. HA's every day, anywhere from 1 - 3 a day.
This time my HA's are all over the place. One day nothing, the next day a mild one that O2 takes care of with no problem, and then I'll get 5 in a day.
My question is - has anyone else that has had a fairly long remission (lets say for arguments sake - 3 years) seen a different pattern with their CH's or have they come back pretty much the same as before.
I know I will have to wait these out to see if a pattern develops and if I am going to be episodic this time or back to being chronic but was just curious what others have experienced.
Thanks
Chris L
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Drk^Angel
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Re: CH Patterns after remission
« Reply #1 on: Aug 23rd, 2002, 12:56pm » |
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My cycles are always different from the one before, but this cycle takes the cake. After a remission of about 3 years (only a couple of random attacks during that time) this cycle has broken my personal record for longest cycles by over 6 months, and it's still goin'.
PFDAN...................... Drk^Angel
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Linda T
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Re: CH Patterns after remission
« Reply #2 on: Aug 23rd, 2002, 7:05pm » |
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Dear ChristineL:
My first ch cycle was in 1984. One attack each day at precisely 7:30p.m. Each lasted about 2 hours. Lasted 3 months. No meds. One day - gone. No shadows, nothing.
Second cycle 11 years later - 1995. Four months. One CH a day at around 8p. Hit on elavil 3.5 months into cycle and then a few weeks later gone. Elavil or end of cycle - don't know.
Third cycle 2 years later - 1997. Lasted 2 weeks. One or two attacks each in the middle of the nite - like 2a and 4a. Took elavil. Then they were gone.
Fourth cycle - 2001. Started in November. Could just be going out now (saying this in a whisper so he won't hear). Got an attack each and every day between the months of November and April 2002. Good day 3 attacks. Progressed to as many as 8 per day. All over kip 7. Constant shadows. Lots of meds. Started Inderal LA in April and have had shadows at the "usual times" just about every day since. Noticed this week that I actually went 3 days without a shadow. Shadow yesterday. Nothing again today. Like I said - maybe on it's way out.
I just wanted to fill you in on my cycles because I know that you are probably desperate to see some type of pattern. May not happen. My attacks were just all over the place. I did have a few each day that came at the same time but the rest just happened whenever the hell they felt like it.
CH is just too unpredictable.
Good luck and I wish you PFDAN always. LInda T
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What a long, strange trip it's been!
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domm
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Re: CH Patterns after remission
« Reply #3 on: Aug 23rd, 2002, 7:30pm » |
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Mine are now very regular either. First cycle in 1996, lasted 8 weeks with 3 to 4 per day, seemed very regular. Tapered off slowly. Remission for three years. Hammered again in 1999. 14 weeks, very irregular with only one for sure - 1:30 am. on the dot - like a train. Hit me at about 50 mph, too. Then slow tapering off. Three years later, just started about 4 weeks ago. This one is strange. started building, but backed off. acted like they wanted to get regular, but then I had a day and a half PF. I seem to be still getting my nightly visitor, but now I also seem to get one in the early afternoon. Lots of shadows and never sure when things are going to go from bad to worse.
Not to disrupt this thread, but how you do handle that situation? You can feel it coming, but you're just not sure. Do I hit the Imitrex or wait.? The sooner I take the Imitrex, the lower the level and the shorter the time. But most of the shadows tend to just go away without further ado, thank you very much.....
Sometimes I panic and hit the button. But I worry I'm wasting resources.....
domm
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domm
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Re: CH Patterns after remission
« Reply #4 on: Aug 23rd, 2002, 7:32pm » |
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Sorry - my fat fingers meant to type "not very regular". Guess I'd better preview before posting..... 
domm
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kim
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Re: CH Patterns after remission
« Reply #5 on: Aug 23rd, 2002, 8:09pm » |
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Episodic since about 1974. So far, every two years (6-8 weeks of Hell), and then nuttin for the next two years. So far no variant. They will either disappear off into the sunset or worsen. I don't know.
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NancyMcFree
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Re: CH Patterns after remission
« Reply #6 on: Aug 23rd, 2002, 8:31pm » |
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Dom, my question as well would be "what the heck do you do for the shadows". While they don't hurt as bad they seem to take over your life ....... Talked to a few people that suggested using the oxygen for shadows ... perhaps that might work.
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Charlie
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Re: CH Patterns after remission
« Reply #7 on: Aug 23rd, 2002, 9:17pm » |
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I've been in remission for 11 years. I was always episodic and the attacks would average about 20 minutes but I had a couple hang on to almost 40. 15 to a little less than 30 was more like it.
I don't miss them at all and am hoping the rest have the same experience. Damn thing is truly a horror.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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ChristineL
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Re: CH Patterns after remission
« Reply #8 on: Aug 23rd, 2002, 9:33pm » |
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Thank you all so much for your advice and experiences. As far as handling the shadows I try and ignore them for as long as I can but have found the O2 will get rid of them at least for a short time.
I try not to use the imitrex unless I have had a lot of CH's in one day/night and I need some rest. The Imitrex seems to give me at least 4-5 hours without a HA.
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kim
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Re: CH Patterns after remission
« Reply #9 on: Aug 23rd, 2002, 10:03pm » |
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Hey ChristineL,
At peak cycle with shadows all the time dogging you; to me that is the hardest time dealing. no matter what meds you are doing it seems like you are getting these short reprieves in between attacks. I recall watching a movie (sedated or in some sort of "gelled" state of mind, knowing the inevitable will come shortly), then the dance begins again. 40-120 minutes later starts all over again. And round and round it goes.
Hubby would say (in the moments when not hurting so bad) "don't talk, don't let the high (the after glow) make ya start blabberin, cuz next time is around the corner....
Remission comes when the shadows, the after glow and alll the rest of the big bag of chips is simply GONE. Whadyado then? Need I ask? ;D
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Jim R
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Re: CH Patterns after remission
« Reply #10 on: Aug 24th, 2002, 6:38am » |
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I had a seven year remission on verapamil 240 ER and then the verap stopped working (or at least was much less effective) and now am in my second year of cyclical again. I have long cycles - about 6 months, not weeks, and it started way early this year - in July compared to my usual end of Sept., beginning of Oct. BTW, the pain has switched sides from cycle to cycle.
Good luck and PFDAN's - Jim R
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
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