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!!!

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-

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

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.

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.  

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    

26 years every other April/May/June with two deviations of October instead of Spring. Duration normally 4-6 weeks.

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!  

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. :-/

Sanna

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-

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

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.

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

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

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

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

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.

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

Approx 18 months of PF followed by 4-6 weeks of hell for me!

Dave

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.

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.

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.

Usually nine months, last time it was two years though.

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

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. :-X

Used to be once a year for about 6 weeks. Been in 'remission' going on 5 years. Still get shadows, sleep disturbances and other symptoms like I am in cycle, but no dancing with the devil.

I was chronic the first two years. Remission lasts 1 1/2 to 2 years. with only one lasting 2.5 years in 20 years of CH.

Have always started a cycle in April. Usually last about three months with a three year break but this time had only a two year break.

hi

mine abate for almost a year to the day from when they start, but they last for 2-3 months during a cycle.

my mom had them episodically, but they suddenly
stopped a few years back.

I find that I know my cycle is coming on because I drink alcohol- at first I just didn't drink, but after 13 years, one cycle the beast hit me in the middle of the day- no drinking- after seeing a neuro, I was on verapamil 180mg- been fine for 2 1/2 years, then one night, had a beer, it was back- mild at first, but over the next 4 days got worse- neuro upped verapamil to 360, I took imitrex (thank GOD!) when I was using imitrex too much, neuro put me on O2- but that was at the end of the cycle, don't know how it affected CH, but helped with shadows- moral of all of this?  I think I have cycles mid summer & mid winter, but drugs have prevented the KIP 3+ from visiting- except that one time in 3 years on verap.

My first cycle was in May, 2000. I had 3 more cycles, with breaks of about 16 months between. Last cycle started April, 2004, and hasn't stopped.

edited for clarity

I was episodic, would start every spring when the temp took a dramatic change.  Then one year the cycle took over 16 months.  Then, out of cycle since.  I am really concerned that they will return soon because shadows seem to pop up more often recently.

I have had these for 13 years. My shortest remission was 6 months.  6 years ago I started a 2 year remission.  Then I started a 4 year remission followed my my longest sycle ever (5 months).  I am now pain free for 3 months but shadow every day.  I believe the beast may now be in a chronic form being swatted away with a little help from a friend named RC.

My cycles have always started late April, early June.  Some years are full-blown.  Some years (like this one - whoopee!) are just a collection of brief 1's and 2's.  Doc says that's just the way it is.

I'll sometimes get a brief batch of shadows at other times, but no big deal.

Hi!  This is my first post on the board, even though I've been lurking around for the last week.  I've been having CH for 15 years.  The first 7-8 years they were all over the place.  But since then they have been every year in Oct.  Every year the cycle get's longer.  However, there have been two times that I was in remission for 1 1/2 years.  Both times I got a cycle in June/July.  The first one we (my neuro and I) figured out that I had caused them by stressing over promotions.

I have now been in this cycle for 9 days and they are progressively getting worse.  I have them every day, at first it was between 2-3am and now they are between 7-9pm.  Already had one tonight, so hopefully that's the only one for the night.  I'm thankful they don't happen at work, but they still leave me feeling drained.

I'm also thankful I found this board.  I never knew there was so many people out there like me.

Wendy

Hey Wendy, welcome to the site.  Sorry you had to come looking.  But you will find a lot of good folks here.  They have helped me out a lot.  Besides the CH, we share a lot of the frustrations in dealing with it.  When you have a good evening, start a new thread and let us know a little bit about your experiences or questions.  Until then, browse and read.

I hope your hits are mild and your cycle short.

When I first got them about 30 years ago I was in my early 30's and they came at first in the summer and lasted for several weeks.They would usualy come back every year up until my late fifties.

I'm now 62 and my last one was 3-4 years ago. But the beast is back (not as strong as b4) and I'm in my 3rd week of ch. They seemed to have been triggered by the lingering storms we are having this summer coupled with some red wine I drank.

I was in remission (3 Yrs) until I was in a car accident and I been having them 4-6 times a day ever since. It was never this bad!! They only came at night and on my right side. Now they are during the night and the day on left and right. I have been having them since 20 I am now 37. Could the accident have triggered something?

:-/

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!)

Chuck[/size][/quote]



Holy cow Chuck!
That was always a nightmare scenario I told friends: ''Luckily those headaches never happen at both sides to people,'' thinking at least THAT was a positive thing about CH. Boy in a bubble, was I wrong about that one. You must be one tough son of a gun, Chuck (this is a compliment btw lol).
I'll be honest on this one, Chuck: I'd rather give birth rectally to an adult African elephant and a peckish polar bear at the same time and suffer the haemerroid crater afterwards, than ever being hit all over my head! Must be hell.

Here's hoping for you they don't visit a lot!

Greetings.

maalstroom wrote on Jul 21^st, 2008 at 1:46am:

You must be one tough son of a gun

Nope, I am just a clusterhead.  No different than all the rest of us tough sons of guns!






maalstroom wrote on Jul 21^st, 2008 at 1:46am:

Here's hoping for you they don't visit a lot!

Well the double sided hits are fairly rare.  About one or two a month.   As far as the "regular" hits, during low cycle, like now, I get hit, oh, 6 to 10 times a day.  Any day with less than 5 hits, I consider a pain free day.

Chuck

Chuckie, I would love to have you for a grandpa!
Love, Sandra :)

DennisM1045 wrote on 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-

Here's an update.  That ever morphing beast only gave me 8 weeks off this time.  Mid May to Mid July.  Hope I'm not trending towards chronic.

-Dennis-

My last cycle was in Dec. of 2005.  Before that it was July of 2003.  Before that was Sept. 2000 (when I found this place).  Before that it's been sketchy, but I was getting them about every 18 mon. (each one lasts about 40 days) since I was 16 yrs old (back in 1990).  They spaced themselves out a bit due to pregnancies so it'll be interesting to see what they do now that I can no longer have babies.  

If they do come back, which I'm counting on, I hope they at least have some predictablility.  I hate surprises!

:)mel

edited for spelling

I've read all these posts and I must admit I'm amazed. At the variety, the coping mechanisms, the courage, the good humor. We all need huge doses of the last three.

Welcome to the new people, this is a great place. Nice to see another LA area person, Wendy, and glad you've found a good local neurologist! Let me know if there's any way I can help.

As a few have written, I too thought I was finished with this madness. Didn't have anything other than the odd and mild enough one-off headache that a couple of Excedrin took care of quite easily for more than 4 years, until my most recent full-on cycle hit on May 7th. So I guess there truly are no rules.

What fun now to see if I start up once again with the seasonal cycles. Oh joy. Oh happiness.

David

I'm episodic, and have cycles starting at any time of the year, spring, summer, winter and fall.  No set pattern.

Cycles last anywhere from 8 weeks to 16 weeks, but I have lovely PF time for 18 to 24 months!.  Thank you God.

I am now PF for over 2 years.

So, as Chuck and others have said, there is no set rule as to how often, how long, or how much PF time.

The key to living which this affliction is to learn to live for those PF seconds, minutes, days, months, years.  In other words, when you are PF live life to the fullest.  When you are in cycle, live for those PF moments.  

Nobody says it's easy to live for those PF minutes, but if you focus on and worry about when that next hit will occur, you have no life.  The hit will hit when it hits.  Live your life between them.

Sandy

My cycles always started at any time of every year and may last from 8 weeks to 16 weeks.