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        Cluster Headache Help and Support >> Cluster Headache Specific >> What is the longest remission any of us have had?
        
(Message started by: aubmari on Sep 14^th, 2006, 6:19pm)

Title: What is the longest remission any of us have had?
Post by aubmari on Sep 14^th, 2006, 6:19pm

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? [smiley=huh.gif]

Title: Re: What is the longest remission any of us have h
Post by BigCoffinHunter on Sep 14^th, 2006, 6:24pm

1st cycle to this second one was 3 years. I had almost thought they were a one time deal.

Title: Re: What is the longest remission any of us have h
Post by JeffB on Sep 14^th, 2006, 6:25pm

5 years. Until about 2 years ago.

Title: Re: What is the longest remission any of us have h
Post by aubmari on Sep 14^th, 2006, 6:27pm

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.

Title: Re: What is the longest remission any of us have h
Post by BlueMeanie on Sep 14^th, 2006, 6:29pm

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. :o

Title: Re: What is the longest remission any of us have h
Post by HeadhurtinMama on Sep 14^th, 2006, 8:00pm

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!

Title: Re: What is the longest remission any of us have h
Post by BobG on Sep 14^th, 2006, 8:07pm

Congrates on your 4 year remission. :D

on 09/14/06 at 18:19:15, aubmari wrote:

Any body out there gone longer? [smiley=huh.gif]

Yep. I have. About 7 years now.

on 09/14/06 at 18:27:29, aubmari wrote:

Do you know of anyone that has completely stopped getting them.

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.

Title: Re: What is the longest remission any of us have h
Post by Chonas on Sep 14^th, 2006, 8:36pm

Years dancing: 16, longest remission: 18 months.

Title: Re: What is the longest remission any of us have h
Post by big guy on Sep 14^th, 2006, 8:45pm

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

Title: Re: What is the longest remission any of us have h
Post by BigCoffinHunter on Sep 14^th, 2006, 8:55pm

on 09/14/06 at 20:45:41, 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.

Big Guy

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.

Title: Re: What is the longest remission any of us have h
Post by Theresa on Sep 14^th, 2006, 9:20pm

Five years with no CH until 18 months ago

Title: Re: What is the longest remission any of us have h
Post by Mrs Deej on Sep 14^th, 2006, 9:23pm

Don't jinx yourselves, please!

love and support,
Steph

Title: Re: What is the longest remission any of us have h
Post by big guy on Sep 14^th, 2006, 9:38pm

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

Title: Re: What is the longest remission any of us have h
Post by brewcrew on Sep 14^th, 2006, 9:41pm

on 09/14/06 at 21:23:38, Mrs Deej wrote:

Don't jinx yourselves, please!

love and support,
Steph

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.

Title: Re: What is the longest remission any of us have h
Post by thebbz on Sep 14^th, 2006, 10:24pm

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. ;;D ;;D 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

Title: Re: What is the longest remission any of us have h
Post by kcopelin on Sep 14^th, 2006, 10:31pm

Episodic from Jan 1981 until Feb 2005-longest remission 4 years (two pregnancies). Longest remission since Feb 2005-0 days.

19 years!!!! :o Dude!

May you all become pain free and break Big Guys' record!
kathy

Title: Re: What is the longest remission any of us have h
Post by chopmyheadoff on Sep 15^th, 2006, 9:13am

2 days !!!

until i discovered verapamil -

now its 2 months ;;D ;;D

Title: Re: What is the longest remission any of us have h
Post by LadyC on Sep 15^th, 2006, 9:39am

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.

Title: Re: What is the longest remission any of us have h
Post by chewy on Sep 15^th, 2006, 10:48pm

I'm now in my 4th year.

I think Charlie is the current record holder.

Title: Re: What is the longest remission any of us have h
Post by georgej on Sep 15^th, 2006, 11:34pm

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

Title: Re: What is the longest remission any of us have h
Post by kindness2others on Sep 16^th, 2006, 11:18pm

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!

Title: Re: What is the longest remission any of us have h
Post by Skyhawk5 on Sep 17^th, 2006, 12:47am

In 18 years longest is 26 months. Currently 2 years, for the last 6 years. Good Luck, Skyhawk5

Title: Re: What is the longest remission any of us have h
Post by wam on Sep 17^th, 2006, 8:00pm

Two years was the longest.Just ended a cycle recently.I hope to go without em for a LOOOOOOOOOOOONG time now!!!

Title: Re: What is the longest remission any of us have h
Post by aubmari on Sep 18^th, 2006, 10:57am

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. ::) ::)

Title: Re: What is the longest remission any of us have h
Post by bluebrain on Sep 19^th, 2006, 7:06am

None until I began using magicmushrooms, now around
3 months remission with a single dosis.
best wishes
bluebrain

Title: Re: What is the longest remission any of us have h
Post by StressFree on Sep 19^th, 2006, 6:06pm

Six years remission was the longest and most recent for me. It seems like mine have been farther apart in each of the last 4 cycles. I am 39 now, and I hope that I have "outgrown" them. I know some of us are up there in years and still getting hit though. I believe mine return during a combination of allergy season, unusual stress, and perhaps sinus infection/cold or flu at the same time. The last cycle I had started after one of those long and severe headaches that occur with flu and bad fever (where it really hurts your head when you cough.) I'm pretty sure that sometimes I have aborted cycles by hitting OTC anti-inflamatories like crazy at first twinge. It seems like sometimes I get by with only a few shadows for a few days while taking Aleve or Orudis. Very scary when that happens. I used to use Meprobamate the same way. Sorry to ramble.
Prayers for all, Rich

Title: Re: What is the longest remission any of us have h
Post by no-one on Sep 19^th, 2006, 6:29pm

4 hours :(

Title: Re: What is the longest remission any of us have h
Post by aubmari on Sep 19^th, 2006, 6:33pm

Seriously????4 hours??? I guess I should feel somewhat lucky (knock on wood and all that jazz) that I get a break from them. Hope your time between increases!!!!!! :-[

Title: Re: What is the longest remission any of us have h
Post by no-one on Sep 19^th, 2006, 8:10pm

yes Seriously I am chronic,( I usally every 2 1/2' hr's, and it is back to that) But I love hearing that others do get a break it gives me something to look forward too. Some day they will find something that works for me, I won't give up hope.
PF wishes
b

Title: Re: What is the longest remission any of us have h
Post by Melissa on Sep 19^th, 2006, 9:51pm

2.5 years

Title: Re: What is the longest remission any of us have h
Post by Carl_D on Sep 23^rd, 2006, 3:11am

Wow. Hard question.

Lemme see, started a first mild cycle in '87... another in '88 shortly before my dad passed, I can't remember if it was 90 or 91 when I went into an attack in front of my mom and started punching myself in the head and she flipped! I always had her tolerance for pain (which was NONE, I was a whimp) and when she saw me clocking myself in the right side of my head over and over, she knew something was wrong. I think I had a cycle before then....

I was CH free when I joined a band called Zeal in April of 1992. My next hardcore cycle (the mother of them all to that point) occurred around late may of '93 after my mom died. That was when it reached the piont I was convinced I had an anuerysm ready to blow in my temple. After that, I went through long cycles but could function. From '95 to '97 I would get one or two here or there maybe once every 1-3 weeks. It was very infrequent, and mostly in my sleep. I did however get hit twice while working for a vet lab service company as a courier. The first time it wasn't an issue. A couple of months later I got hit, pulled over into a parking lot, and called the south county driver to see if he could make the only pick up I had that day. He had no problem with it. The dispatcher had no problem. My road rep FREAKED and got me fired. While I was in an attack, and had covered all my bases... she kept calling and bitching so I threw the cellphone to the floorboard and ignored it.
Went chronic in '98 and the first 2 1/2 years were complete hell. Lost 3 jobs in a row, then did a demolition job before getting wiped out with hits back to back. Went into remission February of this year until late July.

So... I am guessing the longest break I had was maybe a year and a half to two years.

Peace,
Carl D

Title: Re: What is the longest remission any of us have h
Post by Kate in Oz on Sep 24^th, 2006, 7:14am

19 years - that's great... gives us all hope!

I started at 18, 37 now. Episodes spring & fall every year.

18 months longest - during pregnancy & breast feeding.

This cycle and the last mostly pain free due to getting on the verapamil at the very first sign of a cycle - does that count??

PF Wishes to you all,

Kate

BTW no-one I sure do hope you find something that works real soon... :-/

Title: Re: What is the longest remission any of us have h
Post by Bond007 on Sep 24^th, 2006, 1:09pm

Not longer, but I've gone shorter.......in the last year my longest remission has been 10 days. UGH! :'(

Unless of course, you count my second cycle with CH when I was 23 and my third cycle that started just before I turned 38. So, that's what.....15 years even though my neuro back then diagnosed me with migraines but looking back today I now know that 3-week period was definitely a full-blown CH cycle and NOT a migraine. Hell, I was banging my head so hard against the wall at my grandparent's house that I actually put my head right through it. It wasn't a pretty a sight. Somehow, I don't think a migraine sufferer would be doing anything remotely like that.