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Topic: What is the longest remission any of us have had? (Read 1158 times) |
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aubmari
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What is the longest remission any of us have had?
« on: Sep 14th, 2006, 6:19pm » |
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I am going on almost 4 years with out CH's and feel like I am due. I have only had 2 cycles that I know of and there was almost 3 years in between the two. Any body out there gone longer? 
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BigCoffinHunter
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Re: What is the longest remission any of us have h
« Reply #1 on: Sep 14th, 2006, 6:24pm » |
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1st cycle to this second one was 3 years. I had almost thought they were a one time deal.
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JeffB
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Re: What is the longest remission any of us have h
« Reply #2 on: Sep 14th, 2006, 6:25pm » |
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5 years. Until about 2 years ago.
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| « Last Edit: Sep 14th, 2006, 6:25pm by JeffB » |
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aubmari
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Re: What is the longest remission any of us have h
« Reply #3 on: Sep 14th, 2006, 6:27pm » |
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I started being half convinced that I, maybe, cross my fingers, wouldn't get them again. Do you know of anyone that has completely stopped getting them.
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BlueMeanie
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Re: What is the longest remission any of us have h
« Reply #4 on: Sep 14th, 2006, 6:29pm » |
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26 years with CH and the longest remission ever was 18 months. Until now that is, I've been PF for 2 years 7 months and 27 days. 
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HeadhurtinMama
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Re: What is the longest remission any of us have h
« Reply #5 on: Sep 14th, 2006, 8:00pm » |
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About 6 months, two times since I have been chronic for about 12 years. Both of my pregnancies, the second and third trimesters. Within a few weeks of giving birth, the beast was back. We are currently battling back with verapamil and topamax. I love my new neuro!
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BobG
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Re: What is the longest remission any of us have h
« Reply #6 on: Sep 14th, 2006, 8:07pm » |
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Congrates on your 4 year remission. 
on Sep 14th, 2006, 6:19pm, aubmari wrote:| Any body out there gone longer? |
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Yep. I have. About 7 years now.
on Sep 14th, 2006, 6:27pm, aubmari wrote:| Do you know of anyone that has completely stopped getting them. |
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Nope. With the way clusters come and go with no rhyme or reason we probably have to wait until we die to know for sure.
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Chonas
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Re: What is the longest remission any of us have h
« Reply #7 on: Sep 14th, 2006, 8:36pm » |
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Years dancing: 16, longest remission: 18 months.
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big guy
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Re: What is the longest remission any of us have h
« Reply #8 on: Sep 14th, 2006, 8:45pm » |
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Started CH 40 years ago. 19 year remission until July 10th this year. It took at least 10 years to stop expecting them every year.
Big Guy
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BigCoffinHunter
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Re: What is the longest remission any of us have h
« Reply #9 on: Sep 14th, 2006, 8:55pm » |
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on Sep 14th, 2006, 8:45pm, big guy wrote:Started CH 40 years ago. 19 year remission until July 10th this year. It took at least 10 years to stop expecting them every year.
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Wow 19 years! Do you have any idea what changed when they ended and began? Diet, drugs, exercise, wife, kids, anything at all? There has to be some factor that we all share.
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Theresa
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Re: What is the longest remission any of us have h
« Reply #10 on: Sep 14th, 2006, 9:20pm » |
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Five years with no CH until 18 months ago
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Mrs Deej
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Re: What is the longest remission any of us have h
« Reply #11 on: Sep 14th, 2006, 9:23pm » |
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Don't jinx yourselves, please!
love and support,
Steph
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big guy
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Re: What is the longest remission any of us have h
« Reply #12 on: Sep 14th, 2006, 9:38pm » |
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They quit about the time I got married, although they had allready become much less frequent and less severe. Also I toned down the partying about the same time.
I started having CH when I was about 13 and had at least one bad cycle every fall all through my teens and early 20's. Took Sansert and Cafergot for a number of cycles. Later took Lithium. In my mid to late 20's I was clusterbusting for recreaction without knowing it might help my CH. The cycles did not end there but did get further apart and less severe. My last cycle was in 1987 and was very short. 2 or 3 hits in about a week.
The only thing I can think might have caused them to return was that I had been on a SSRI (Celexa) for mild depression for about 4 months.
When the first CH hit it was like they had never left.
Big Guy
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Brew
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Re: What is the longest remission any of us have h
« Reply #13 on: Sep 14th, 2006, 9:41pm » |
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on Sep 14th, 2006, 9:23pm, Mrs Deej wrote:Don't jinx yourselves, please!
love and support,
Steph |
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With all due respect, Steph, we can't believe in that shit. If we did, we could never talk about it (and thus not be able to help others).
Bill
Edited to add: Diagnosed for 15 years (sufferer for a couple more than that), longest remission 6 months.
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| « Last Edit: Sep 14th, 2006, 9:43pm by Brew » |
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thebbz
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Re: What is the longest remission any of us have h
« Reply #14 on: Sep 14th, 2006, 10:24pm » |
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Good question.
I haven't gone longer than that, however I went from May 2003 to Dec 2005. I have to thank clusterbusters alternative for aborting one winter episode,2004. The whole episode.  Does that count as remission?
I sure am glad for you PF people. Keep up the good work. PF 4 months and counting.
all the best
jb
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kcopelin
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Re: What is the longest remission any of us have h
« Reply #15 on: Sep 14th, 2006, 10:31pm » |
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Episodic from Jan 1981 until Feb 2005-longest remission 4 years (two pregnancies). Longest remission since Feb 2005-0 days.
19 years!!!! Dude!
May you all become pain free and break Big Guys' record!
kathy
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chopmyheadoff
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Re: What is the longest remission any of us have h
« Reply #16 on: Sep 15th, 2006, 9:13am » |
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2 days !!!
until i discovered verapamil -
now its 2 months
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LadyC
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Re: What is the longest remission any of us have h
« Reply #17 on: Sep 15th, 2006, 9:39am » |
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I had a six year remission that ended 28 weeks ago. This is the longest cycle I've had since I stopped being chronic and became episodic, about 15 years ago. As horrible as this cycle is, I'm very grateful for the long remission.
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chewy
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Re: What is the longest remission any of us have h
« Reply #18 on: Sep 15th, 2006, 10:48pm » |
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I'm now in my 4th year.
I think Charlie is the current record holder.
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George_J
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Re: What is the longest remission any of us have h
« Reply #19 on: Sep 15th, 2006, 11:34pm » |
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Episodic forty years. For the first twenty, I cycled twice a year, spring and fall. For the next ten, I cycled once a year. The last three cycles have been three years apart. I'm now three months past my most recent one.
I don't believe they're finished.
Best,
George
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kindness2others
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Re: What is the longest remission any of us have h
« Reply #20 on: Sep 16th, 2006, 11:18pm » |
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I had a six-year remission after my first two cycles. I am now in my third cycle and can't wait for it to be over!
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Skyhawk5
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Re: What is the longest remission any of us have h
« Reply #21 on: Sep 17th, 2006, 12:47am » |
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In 18 years longest is 26 months. Currently 2 years, for the last 6 years. Good Luck, Skyhawk5
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wam
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Re: What is the longest remission any of us have h
« Reply #22 on: Sep 17th, 2006, 8:00pm » |
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Two years was the longest.Just ended a cycle recently.I hope to go without em for a LOOOOOOOOOOOONG time now!!!
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aubmari
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Re: What is the longest remission any of us have h
« Reply #23 on: Sep 18th, 2006, 10:57am » |
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So I sounds like I am not miracally CURED cause I have gone more than 3 years  . I guess I kinda hoped that someone would respond and say that they have never heard of that and that I was cured hehehehe YA RIGHT! So sounds like we are all in for a long ride but at least we have each other. 
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bluebrain
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Re: What is the longest remission any of us have h
« Reply #24 on: Sep 19th, 2006, 7:06am » |
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None until I began using magicmushrooms, now around
3 months remission with a single dosis.
best wishes
bluebrain
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