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How long is your remission time? Please reply (Read 10780 times)

Scott M

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How long is your remission time? Please reply
Jun 5^th, 2008 at 4:49am

I know this varies for everyone, and this is of course a question related to episodic sufferers, but how long is your remission time? and the other question - do people know of other CH sufferers who went into remission and never had another cycle again?

seems like a lot of experiences I've read about have their cycles like clockwork, every year at the same time or every so many months or whatever. I've had 4 cycles in 7 years, first one January 2001, second one december 2003, little foggy about when my 3rd one was but I think winter 2005, and then now May 2008. so I haven't really found any pattern to mine, but I'm in my 6th week of this one which is longer than any of the others by at least 2 weeks. so ready to go into remission forever!!!

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DennisM1045

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Re: How long is your remission time? Please reply
Reply #1 - Jun 5^th, 2008 at 7:31am

My cycles are like clock work now. 3 months on and 3 months off. Though they didn't used to be. For a long time it was pretty random and the cycles were much shorter.

My Father suffered too. His attacks just went away one day when he was around 45. They never came back.

I'm 47 now and still hoping...

Hange tough Scott...

-Dennis-

« Last Edit: Jun 5^th, 2008 at 7:47am by DennisM1045 »

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So be safe, don't smoke while using O2. Kill the pain and not yourself.

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seasonalboomer

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Re: How long is your remission time? Please reply
Reply #2 - Jun 5^th, 2008 at 7:59am

Mine used to be consistent 4-6 weeks on, 5 months off for two cycles a year. Not so much now. It's presently more like 1.5 cycles a year with longer cycles. Also dealing with an abnormally long cycle this spring/summer (and tired of it).

My dad's also just stopped one day, for over 7 years, until he got a shot of nuelasta (sp?) during chemotherapy to help counter some affects from the chemo on his blood.

Scott

Scott

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maalstroom

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Re: How long is your remission time? Please reply
Reply #3 - Jun 5^th, 2008 at 8:56am

In the nineties I had them all over the place, but since late 2000 they come every two to two and a half years.
Currently in cycle now for almost a month, but the last episode I had before this one was from the last week of september 2005 into the first week of december 2005. To be honest, I had almost forgotten the Beast and I were acquianted.... that is, untill May this year. It was back with a vengeance.

...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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Paige_H. CH.com Junior Offline What the hell? Posts: 85 x0\|Princeton\|USA\|\|0\|0\|WV,West_Virginia	Re: How long is your remission time? Please reply Reply #4 - Jun 5^th, 2008 at 9:06am Right around every 18 months and last about 6-8 weeks. The only time the cycle goes longer is if I use verapamil. My grandmother had CH and hers just up and went away also.
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George

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Re: How long is your remission time? Please reply
Reply #5 - Jun 5^th, 2008 at 9:16am

For twenty years, I cycled twice a year--late May to the beginning of July, and then again late October to the beginning of December.

Then I cycled once a year for ten years--almost always during the period of May/July.

Then I began to have three years between: 2000, 2003, 2006--all cycles in the May/July period. I've now been in remission for two years.

My episodic cycles are like a clock all right, but they seem to be behaving like a clock that is slowing down. They certainly come along less often these days, but when they do, they're just about the same in intensity and duration.

YMMV.

Best wishes,

George

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Drew_Va CH.com Junior Offline Posts: 74 x1\|Louisa\|USA\|usa\|470\|156\|VA,Virginia Gender:	Re: How long is your remission time? Please reply Reply #6 - Jun 5^th, 2008 at 11:29am 26 years every other April/May/June with two deviations of October instead of Spring. Duration normally 4-6 weeks.
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Layla328

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Re: How long is your remission time? Please reply
Reply #7 - Jun 5^th, 2008 at 11:56am

Hi. Mine were 3 months long every year in the fall for many years--over a decade. Then my cycles switched to summer and with that change past 2 cycles was a 2 summer break in between! My last cycle itself was longest yet though--pushing 5 mos long. But I will take the break in between--to me that is way better!

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sandie99

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Re: How long is your remission time? Please reply
Reply #8 - Jun 5^th, 2008 at 12:17pm

I'm trying to figure out what the devil has planned for me.

After all, I thought that I'm in cycle in the fall - my first, second and third were in the fall. Just that the third one went on and on and on I became chronic. Then the beast left and came back in the Spring and now Spring it is.

My cycles have lasted 3 - 6 months, my longest remission was nearly a year.

This year, the beast arrived in April and I have no idea how long it will stay. Undecided

Sanna

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mezza CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 415 north carolina Gender:	Re: How long is your remission time? Please reply Reply #9 - Jun 5^th, 2008 at 2:01pm started 13 years ago- have had three cycles total - approximately 4-5 years in between each cycle- cycles in the past lasted 2 weeks - killed the cycles with a medrol pack. The cycle- 12 weeks total. Always around spring daylight savings time-
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habanero

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Re: How long is your remission time? Please reply
Reply #10 - Jun 5^th, 2008 at 2:15pm

in the 90's i had 3 major painperiods till got diagnosed by a public healthcare doctor.
pain lasted about 90min and was bad.
first ever started 4 pm after work.
rest of them 10-11pm (or when calming down for the night)
periods 6 weeks long, early summer or mid winter.
after 2000 they have come every other year april-may.
still 6 weeks and pain bad.
imigran nasally works every other time.
sometimes it takes a minute to kick in and sometimes an hour.
this year it's been different.
5 weeks now, but only like 8 or so semi-big ones.
shadowing for hours sometimes days.
my skull feels like it's infected most of the time after attacks for a long time.
i have a very stresfull situation going on in my life anyway so maybe it helps.
shadows usually start when i rest

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: How long is your remission time? Please reply Reply #11 - Jun 5^th, 2008 at 6:16pm For the first 20 years I had a cycle every 8-9 months which lasted 4-6 weeks. At 40 y/o it jumped to a 2 year remission. Since then each remission has gotten about 3 months longer with my last one being 3 yr 3mo long. Problem is the cycle is now longer also. Last one hung on for 5 months.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: How long is your remission time? Please reply Reply #12 - Jun 5^th, 2008 at 8:04pm I'm like Bob, first 20 years you could set the atomic clock by my cycles...on 3 months, off 3 months. Hit my 40's and the cycle went all over the board. My last cycle went 8 months after an almost 2 year remission Guiseppi
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debOUCH

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Re: How long is your remission time? Please reply
Reply #13 - Jun 5^th, 2008 at 8:35pm

i am soooooo confused..............been in my first cycle since jan 30.............i am 50.......(my dad gets them once a yr for 1 mth in spring and started at my age, but could function with them, where i cudnt!!)........keep tryin to go off meds, and HE starts to visit, so i go back on..........over 4 mths......................the med i am on is keeping HIM @ bay, tho no one here seems to use.....also, i can have my wine, with no effects, and b4 this med, alcohol was major trigger, didnt drink for 2.5 mths............................so dont know..............................guess i will just keep living life!!! it may just want to stay and live with me for ever!!!lmao

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jon019

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Re: How long is your remission time? Please reply
Reply #14 - Jun 5^th, 2008 at 9:10pm

George wrote on Jun 5^th, 2008 at 9:16am:

Then I began to have three years between: 2000, 2003, 2006--all cycles in the May/July period. I've now been in remission for two years.

I'm not sure I could describe CLASS in words, BUT, I know it when I see it. It's all over this board, from lots of folks, and is appreciated more than I can say.

What's the saying?... "grab an oar and start rowing" or is it " give better than you get" or is it " there is no better med than a supporter" or is it " if you're not in pain now, you might be later, stick around".

Don't know, they all work for me. What I do know is that in the dictionary, under "class", there is a picture of the man above (maybe a bird or two also), AND, that REALLY works for me.

Thanks George! I mean, c'mon, TWO years remission and still here, every day!!!!

Regards,

Jon

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CostaRicaKris

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Re: How long is your remission time? Please reply
Reply #15 - Jun 5^th, 2008 at 10:15pm

My longest remission was four years (ended this past September) Before that I was 2 months on, two months off.
Since Sept, I was 2 months on, 4 months off, and I recently had one that lasted two months.

~Kris

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artscribe

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Re: How long is your remission time? Please reply
Reply #16 - Jun 18^th, 2008 at 11:33pm

I've had CH since I was 13-years-old. For many years, the cycles were like clockwork: they came in April and May, and they lasted for about 4-6 weeks. About 8 years ago they started jumping around -- I still had a cycle every year, but they were more difficult to predict. Remission times vary from 8 or 9 months to 18 or so months. My last remission has been 19 months -- I started a new cycle last week. ugh.

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ClusterChuck

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Re: How long is your remission time? Please reply
Reply #17 - Jun 19^th, 2008 at 4:12am

28 years with the beast. First 20 were episodic. I once went 5 YEARS without them! Silly me, I thought I was done with them!

Last 8 years chronic.

I was told as I get older, they get milder or less often. NOPE! Broke THAT rule!

Was told once I hit 50, they would go away. NOPE! Broke THAT rule! (I am almost 60 now ... )

Was told that they are always on one side of the head, but can sometimes switch to always on the other side. NOPE! Broke that rule! (I never know which side I am going to get hit on. The fun ones are when I get hit on both sides at the same time!)

My neuro yells at me all the time for breaking the written down rules that clusters MUST follow! She tells me she has never seen anyone break as many cluster rules as I have! LOL. Then we laugh over it.

I guess what I am saying is, there ARE NO rules that follow all of us. Even our own personal cluster rules get broken fairly often. But I must say, it is interesting to see all the variants!

Chuck

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Lawmandave CH.com Junior Offline If you want peace, prepare for war!!! Posts: 33 Johnstown, Pa Gender:	Re: How long is your remission time? Please reply Reply #18 - Jun 19^th, 2008 at 7:24am Approx 18 months of PF followed by 4-6 weeks of hell for me! Dave
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KatzPurr

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Re: How long is your remission time? Please reply
Reply #19 - Jun 19^th, 2008 at 11:38am

I honestly don't think there are any hard and fast rules with clusterheads. Most people, myself included, have not found any pattern that remains consistent over the long haul.

I've had ch since I was 12, so my experience has spanned over 30 years. In the first 20 or so years, they occurred about once a year, but not always at the same time. The last 3 cycles have been followed by a remission period of about 3 years give or take. The main difference with my last cycle is that it began in the winter and started very slowly lasting a total of several months. The peak was probably one of the worst I can remember, but O2 was my saviour.

This beast knows no bounds and does not fit any norm. Just when you think you have it figured out, the monster throws you for another loop. It's just the way it is and we all learn to adjust somehow and continue living life.

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: How long is your remission time? Please reply Reply #20 - Jun 20^th, 2008 at 4:31am my cycles are usually 2 to 5 years apart. they hit any time of the year and any time of day. as most of us do i get hit hard when i try to sleep.
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Chappy

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Re: How long is your remission time? Please reply
Reply #21 - Jun 20^th, 2008 at 4:41am

Remission time? I'll let you know when I have one...

Like everyone said, the beast morphs, so you're not likely to find a pattern in your cycles, and if you do it will go away. Maybe cluster headaches are quantum in nature - you can't observe a pattern without changing it.

All of the "medical texts" say that they're most common in spring and fall, and from all of the posts I've read that seems to hold true. Likely due to changing pressure or maybe humidity with the seasons, supposedly. Of course, medical texts and articles like to make these statistical majorities sound like absolutes, for which there are none in CH land. Here in Tucson we only have 2 seasons: hot as hell and not so hot.

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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: How long is your remission time? Please reply Reply #22 - Jun 20^th, 2008 at 11:58am Usually nine months, last time it was two years though.
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StressFree

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Re: How long is your remission time? Please reply
Reply #23 - Jun 23^rd, 2008 at 7:20pm

Hi Scott,

I was chronic as a teenager. Verapamil and cafergot got me to episodic. Episodic since about 20 years old, now 41. Longer remission every time. About 6 weeks of extreme attacks when in a cycle (I know, is there any other kind?). Up to 6 years since last cycle. Praying for no more! and the same for you all. Blessings for you, Rich

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: How long is your remission time? Please reply Reply #24 - Jun 23^rd, 2008 at 9:44pm For me, always in the spring and fall. (That's why I thought it was sinus). Still think that plays a role although my doc disagrees. I have them twice a year for 14 yrs. Did have one "period" of remission for 2 years. Certain overwhelming smells can set mine off.
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