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De_Minimis
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Questions for Chronics
« on: Apr 17th, 2005, 10:48pm » |
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Saw my neuro back on Thursday. Pretty sure that will be the last time I'll see her. She's just not listening. She did state what I've been afraid to even think, "let's hope you don't go chronic someday."
So there it is. Right in front of me. No denying it. Its out and I should deal with the possibility. First, for those that are chronic, how did the condition progress to that point (age started, age went chronic, etc.)? Well, I guess that's really about the only question at this point. I'm hoping I see a pattern very different from mine, but the chronic worry is always with me. So far, I've been a very regular three-year, late Winter only (until this year), eight-week, cycle kind of a guy. Thanks as always.
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| « Last Edit: Apr 17th, 2005, 10:48pm by De_Minimis » |
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don
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Re: Questions for Chronics
« Reply #1 on: Apr 17th, 2005, 11:12pm » |
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Quote:| I've been a very regular three-year, late Winter only (until this year), eight-week, cycle kind of a guy. |
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Then whats the worry? You will have to go a full year to determine if your chronic.
Dont let an incompetent Doc shake your boots
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| « Last Edit: Apr 17th, 2005, 11:15pm by don » |
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De_Minimis
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Re: Questions for Chronics
« Reply #2 on: Apr 18th, 2005, 12:13am » |
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Ah, but there's the rub ('ing my head). I'm still enjoying cluster opprotunities through the night with shadows during the day.
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survivor13
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Re: Questions for Chronics
« Reply #3 on: Apr 18th, 2005, 12:19am » |
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from the day i first had a cluster i was chronic for ten years straight. at least several days a week. then three years remission. then 4 months non- stop. now 120 days p/f (remission i think).
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| « Last Edit: Apr 18th, 2005, 5:25am by survivor13 » |
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nani
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Re: Questions for Chronics
« Reply #4 on: Apr 18th, 2005, 12:19am » |
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For how long? By definition, you're not chronic until you've gone one year without a 30 day med free PF period. Try not to worry about the future, concentrate on dealing with it one day at a time. PF wishes, nani
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Karla
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Re: Questions for Chronics
« Reply #5 on: Apr 18th, 2005, 12:43am » |
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I started out chronic and went epspdoc.
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Karla
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purpleydog
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Re: Questions for Chronics
« Reply #6 on: Apr 18th, 2005, 1:12am » |
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I was episodic since May of 2000. I have now been in cycle for over a year, with about a 2 week break last summer, otherwise, it's every day. I get a couple days off from time to time. They ramp up and down, but at least two hits a day. Chronic? Yep. Hasn't changed a thing for me though. It's a label. Doesn't change my outlook. The CH sucks, but I will live, as I've done for the past year. I have my good days and bad days, like anyone else, but I refuse to let this fucker rule my life. The bastard keeps trying though. 
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Bionic_Daddy
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Re: Questions for Chronics
« Reply #7 on: Apr 18th, 2005, 1:43am » |
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Hello, I've been chronic since 7-2000. I had only one 6 week hit in 97. I was 35 years old when the BEAST turned my life upside down and went chronic. My brother was chronic from the age of 18 - 25. Now he meets the BEAST every two to three years. I hope your not turning chronic, IT SUCKS!!!
Bionic Daddy
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E-Double
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Re: Questions for Chronics
« Reply #8 on: Apr 18th, 2005, 5:23am » |
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on Apr 18th, 2005, 1:12am, purpleydog wrote:| I was episodic since May of 2000. I have now been in cycle for over a year, with about a 2 week break last summer, otherwise, it's every day. I get a couple days off from time to time. They ramp up and down, but at least two hits a day. Chronic? Yep. Hasn't changed a thing for me though. It's a label. Doesn't change my outlook. The CH sucks, but I will live, as I've done for the past year. I have my good days and bad days, like anyone else, but I refuse to let this fucker rule my life. The bastard keeps trying though. |
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Well said!!!! 
Episodic since '95 ( that i remember for sure)
Latest cycle (last yrs.) never broke.......reached that label.
Keep pushing and living.
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PCMCCK
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Re: Questions for Chronics
« Reply #9 on: Apr 18th, 2005, 11:26am » |
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First episode in 1980, lasted 2 weeks, then nothing until 1988-one episode lasted 3 weeks then each year I kept on getting more epidsodes-2x/year, 3x/year, etc. until 1996-went chronic w/o anything more than a couple of pain free hours here and there; early 2001, woke up, no pain....no pain next day and so on for a bit over a year, then in 2002 while driving to work, listening to Joan Jett on the tape got the icepick in the eye and it has been with me ever since. If my pattern holds true, then in 2 years I am due for a one year remission (not betting any money on it though). I really hope that you don't go chronic, it is a bitch to live with. Best Wishes.
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Linda_Howell
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Re: Questions for Chronics
« Reply #10 on: Apr 18th, 2005, 12:07pm » |
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I started out as episodic.
Then one day they just didn't go away.
That was 18 years ago.
I know. NOT what you wanted to hear, but that doesn't mean it will happen to you.
Linda
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BarbaraD
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Re: Questions for Chronics
« Reply #11 on: Apr 18th, 2005, 12:13pm » |
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I was episodic until 97 and just didn't get a break after that. I've gone thru remissions when I thought I'd returned to episodic, but no such luck.
Don't let it bother you until (or if) it happens. Just enjoy the pain free times.
One thing I've found out about this damn beast -- it's gonna do whatever it wants and there's no rhyme or reason to it.
Hugs BD
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De_Minimis
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Re: Questions for Chronics
« Reply #12 on: Apr 18th, 2005, 2:30pm » |
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Thanks all. Looks like there's just no guessing what it may do next. Tomorrow, might be gone forever. Heck, might already be gone forever. Might be amassing its troops for a full frontal attack as we speak. On the upside, any other pain, seems so inconsiquiental.
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kimmeesue
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Re: Questions for Chronics
« Reply #13 on: Apr 18th, 2005, 2:34pm » |
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It's like being a little bit pregnant....you either are or you aren't. If every cycle you worry that this might be "the ONE" you'll go crazy and there isn't a damn thing you can do to change it.
My first cycle was 21 years ago while pregnant, 5-6 kip9-10 every day for a solid three months then one day they vanished. Didn't return until about 6 years ago, were episodic, every fall, daily for three - four weeks, then again in the spring same thing. Went chronic two years ago.
You CAN deal with it. You learn to make he most of every good day whatever a good day is for you. But the last thing you need is a doc who's going to spook you.
Her's hoping you're not pregnant, er, I mean chronic , for a good long while.
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