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Topic: Permanent remission? (Read 673 times) |
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Mark_Florance
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Are there any "former sufferers" out there whose life has been cluster-free for a number of years? I'm 44 and barely survived my last episode in April of '94. Prior to that I lived with them for 20 years, long before any doctor knew how to help. I dare not think that they will never return, but I am hopeful they will remain in the past. I still have out-dated imitrix syringes in my medicine chest - useless of course, but fear is a powerful thing. How can one's brain chemistry or physical make-up change in order for them to have gone away for so long? It's a real mystery to me but one I am thankful for - every pain-free day.
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ChristineL
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Mark,
I was in remission for 14 years. Forgot about the damn things when all of a sudden out of the blue for no reason BAM - they came back. They have been back now for almost a month - Here we go again!!!!!
Chris L
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jonny
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Yup, Charlie will stop by soon he's been PF for 11 years.
...............jonny
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2late
New Board Hall of Famer
Ride Free..Pain Free
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Re: Permanent remission?
« Reply #3 on: Aug 12th, 2002, 3:16pm » |
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Congrats!!!!! it's great to hear from "former sufferers" your livin' our dream!! it's good to know some people put ch behind them.Someday maybe all of us can be "former" best of luck to ya!!! ...................2late
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The mad viking
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Always Look on The Bright Side of Life
 
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Re: Permanent remission?
« Reply #4 on: Aug 12th, 2002, 5:15pm » |
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I dont think the title here is right.
If all that i have read on cluster that word does not exist.
Sooner or later "General Cluster and his beast"will be back.
But i hope that you get as long remmisions as posible.
So sorry if i have disapointing you but thats it.
Your friend in Norway
Svenn
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Always Look on The Bright Side of Life
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don
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That would be the lack of attacks between the last one and being dead. No one has reported back.
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4Pack
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I was in remmision for 8 years..until 2 months ago...then SOB's showed up again! They are still hanging around...but should be about history again if I go by my past bouts!
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maria
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Mark,
I battled the beast for 22 years episodic, had 5 years pain free which I attributed to taking Prozac during the Beast's preferred visiting times and possibly also taking up golf thus getting more natural sunlight and Vitamin D. The last 3 years I have taken atenalol for blood pressure (no prozac) and the beast last visited me 2 years ago after a major surgery. After getting a general anesthesia, I went into a full blown CH cycle the evening after the surgery, no little warning shadows or anything, moved right into a KIP 7-8 and I was on a morphine drip. Since then no CH, although I am not overly hopeful about this as I have heard this is often a life long affliction and my neuro told me years ago for women it often gets worse during menopause. YIKES. Hopefully we are the exception rather than the rule. Maria
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ChristineL
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Hmmmmmm - I started taking Altace for my BP about 6 months ago - wonder if there is any correlation but...........isn't Verapamil a bp med and they prescribe that for Ch's so I guess I just answered my own question.
Chris L
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Drk^Angel
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Welcome to the board! Glad to hear the beast has lost your address. Hopefully he'll never find it again. Good luck!
PFDAN................... Drk^Angel
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Charlie
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Re: Permanent remission?
« Reply #10 on: Aug 12th, 2002, 11:14pm » |
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Well... I'm happy to say that as of 1991, I've been pain free. I'm not sure why. I'll be 56 very shortly and that may have an effect but there is no proof of that.
My CH began in 1969 when I was 23 and began to dissipate during the most trying time of my life. I'm also an epileptic but I've had seizures for 42 years. I don't know if there is a connection
I wish I had something profound to say but this is about it. I will say that there is nothing etched in stone that says they will never end. So far, I'm amazed and I don't want to rock this boat.
Take care and stick around.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Ree
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Re: Permanent remission?
« Reply #11 on: Aug 13th, 2002, 12:10am » |
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I come here everyday because my husband Dave thinks he is in permanent remission. He won't even talk about them. It has been about 2 years. He usually goes 1 1/2 to 2 years in between cycles... I hope he is right... Congratulations to you... I know this does happen for some. Ree
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
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Slammy
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Re: Permanent remission?
« Reply #12 on: Aug 13th, 2002, 10:19am » |
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Charlie,
I think it is amazing that after being PF for 11 years, you are an icon on here! I salute you sir, for being there for everyone when the beast pays his visits....I only hope that I develop a tenth of your selflessness! Rock on Charlie!
Slammy 
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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Marcos618
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Re: Permanent remission?
« Reply #13 on: Aug 13th, 2002, 12:26pm » |
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My Ch's have become less frequent. I am in one now and the one before this was in 1998. This session and the one in 1998 were BOTH brought on by me being on vacation and spending too much time in the heat and sun. Fewer meds then I use to take years ago are able to control these to some point. Going from a session starting every 18 to 24 months and lasting 6 to 18 months, what I have had in these last two sessions is a great improvement.
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Donna
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Re: Permanent remission?
« Reply #14 on: Aug 13th, 2002, 4:42pm » |
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Well kids, I have been cluster free since 1986.......that's 16 years. I've always said that it's over and believe it in spite of this tread. (Oh such strong wishful thinking!)
I am surprised to hear of a 14 year "remission" that is now over.
I had ch for 28 years when they just stopped for no reason with substance.
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maria
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Re: Permanent remission?
« Reply #15 on: Aug 13th, 2002, 6:04pm » |
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Hey, I've always felt like there is no rhyme or reason to this "horror" as Charlie likes to call it. One year a medicine seems to work the next the beast works its way around it. It is such a trial and error thing with the meds and usually hit and miss. I remain baffled by this as always but on hand to support others if I can. BTW if the beast comes acalling again I will become a shroom farmer. Maria 
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