I'm just curious as to peoples experience with the transformation to chronic, what was your previous episodic like and when and what age did it change to chronic ? I would imagine there's probably not a lot on here who have went from episodic to PF !? No need to be on the web site. Just curious as to what possibly to expect for the future ? Are there anybody who remains episodic without becoming chronic ? I hope this makes sense, I'm just preparing myself ! Gets a bit scary reading some of the posts and anticipating possibly a life of chronic clusters ! PF day to all from the beautiful Okanagan in British Columbia Canada !

I try not to think about going to chronic and I feel for those who are indeed chronic.  I can only wish for you all to be PF.
It's traumatic enough getting episodic CH cycles.  I know it's a posssibility to happen to any of us, but for now, it's one day at a time and while in remission, I actually don't think of CH at all.   I'm posting here now because i'm in a cycle, but I think i'm coming out of it, so I hope.  I'll be interested in seeing the replies.  

Hi Kelly,

I am 30 years old now, and I've been episodic since I was 12 years old.  I had a second episode at 16 years old, then again at 19, then at 22.  I always was told by my mom that my headaches were because I was not taking care of myself, not getting enough sleep, water, vegetables, vitamins.  It didn't occur to me that the headaches fall within a regular pattern of cycle & remission until that last cycle, when I was 22.

I just had my fifth cycle that lasted almost all of July.  I was worried that I was turning chronic, because it hadn't gone away by Day 25 or 26, whereas my previous cycles lasted at most 23 days.  But it did go away.  Day 29 was my last attack.

So I guess I am one of those people who is staying episodic.  I realize that this might change, but I won't dwell on it.  I have my fingers crossed.

Yeah I guess but it still sits in your mind, I'm coming out of a cycle right now (fingers crossed) It's good to know that I have a few weapons for the next time when they hit. Good Luck on the PF time !

Chad wrote on Aug 14^th, 2008 at 2:25pm:

but for now, it's one day at a time and while in remission, I actually don't think of CH at all.

That was my first instinct, too.  Disappearing when out of cycle seems perfectly natural to me.  I fully expected that most people who are active posters are either in-cycle or chronic, and was surprised to learn that some people keep posting when they are out of cycle.  Though, here I am now, posting while not in cycle.

PF wishes to all.

Rest easy.
Its actually fairly rare for an episodic to become chronic. Its hard to see that here as a few posters have indeed become chronic over time. Its a really small percentage in the grand picture.

Episodic since 1982.

Why and whenn change episodic to chronic is the $1 million questtion.

"The later the onset of the episodic disorder, the greater the chance of it becoming chronic." (Kudrow, 1980)

You are young so ...


MJ wrote on Aug 18^th, 2008 at 1:53am:

Rest easy.

... and enjoy your PF time.

Episodic since 1979  cycle last 3 months and longest inbetween cycle was 14 years  - shorest a few months.

I have no realpattern,  the hits come and the hits go and I just forget about how bad they are until they come back

I joined this board  and hung around after my cycle ended, there is a lot of good people here . :D

I was episodic until April of 2004, when I started a cycle April 1st, and it never stopped. You don't officially become chronic until you have gone for a year without a break of 30 days pain free. All the episodics really dread becoming chronic, but there is only a very small percentage that does, as MJ said.

I didn't really worry about it TOO much, the cycle just kept going and going... But then I noticed my hits had changed, and they come at the same times, the hits are less intense pretty much, and I live my life around them.

I still have cycles within a cycle, I'll go into a high cycle that will last for awhile. But, I live my life, and go from there. The beast doesn't rule my life. I don't have time for it.

I am also curious about this.  

My last 'proper' cycle was around this time last year.  Towards the end of the cycle I copped a hit on both sides - at the same time!!  :'( I wanted to die, the pain was soooo bad.  

Anyway since then I have been getting hits out of cycle - usually only  one a week or fortnight. (Always the same time of day 3.am).  I was starting to think maybe I was going chronic?  :o  I don't really understand what that means other than no more that 30 pf days in a year?  (I kinda assumed that if you were chronic you'd get the daily/nightly CH like when you are in cycle?  Sounds like HELL)  Prior to this I have always had episodes - March & again in August that last around 8-10 weeks.  

Well now I'm back 'in cycle' with several nightly hits.  And it's bad bad bad  :'(    Is there anyone out there who went chronic who had this kind of change?   I've been getting CH since I was about 17, I'm now 39.

Appreciate any responses,


PF D&N to you ALL,

Kate    

30 year episodic. I know the chronics say it's some times easier knowing it's always there, I for one LIKE my remissions!

Guiseppi

Statistically, most episodics never turn chronic.

I've been an episodic since 1966, and the cycles have always been about the same duration, although they've been getting farther and farther apart.  

Chronics account for around 10 percent of clusterheads, so chances are that you'll never go there.  

Best wishes,

George

See START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I don't know how reliable this information is, but here it goes.  My wife works for a journal publishing company, and they do a lot of medical journals.  A doctor (in Washington D.C. I believe) is doing a study on the transition from episodic to chronic clusters and suggested that over medication could be a cause.

Again, not sure how reliable it is, but perhaps something to look in to I suppose.

There are plenty that never go to chronic.  They go their whole CH life as episodics.  Don't worry about it.  If it happens to you, deal with it at that time.  There is too many other things in your life to worry about than that.  It is not like worrying about it will make any difference!

It will just get you frustrated, and lead to ulcers.  Take the Alfred E. Newman approach: "What, ME worry?"  (Did I just date myself?)

I was episodic from when I started (29 years old) up until I was 49, and then I went chronic.  Been chronic for the past 9 years.  I cannot think of anything to attribute the change.

Chuck

Thanks guys (?), I really appreciate those replies and Gizmo that link was really interesting too.  I do try to keep an eye on the board but I must of missed it.  To be honest I'm not sure what is happening with this ol' head of mine but I'm keeping two fingers crossed and one hand over my eye.  I've just had my 10pm hit  :-/ not sure what I'm doing back here - I guess just biding time til the 12am hit.

btw, I stopped taking verapamil earlier this year cos I'm sure that it just extends or postpones the cycle!  I ended up having my March cycle in May and it hasn't really ended.  So I'm braving this 'cycle' with the o2 and no meds.  Its worth a try yeah?  That verapamil makes me sooooo tired!  

Ahhhh aint life with CH grand  ::)    I have to say its a wonderful thing to have some place to go where there is real understanding!  Thanks.


Kate

I was episodic for 13 years.  Then, I had an 18 month remission before another cycle started.  That cycle has never ended for the last 10 years.

Is it possible to go from episodic to chronic back to episodic over a 20 year period?

Jeannie

Anything is possible with the beast...

I was episodic for years and years an then in 97 I had a cycle that just never stopped. Guess I went chronic. I live with it.

On the other hand Kip (of the Kip scale) went years episodic - then years chronic - then went back to episodic -- but he had his cocktail every afternoon and just didn't let it bother him a whole lot... I think he had the right idea...

As to why you stick around here while NOT in cycle -- to Pay Ahead for the help you'll get when you ARE in cycle. And besides Chuck and I need someone to fuss at....

Hugs BD

As I said I don't think about it out of cycle, but I still post here.
I guess i'm slacking at work, LOL!

I really come on to learn and support others so the next cycle i'm stocked up with amo and knowledge to kick the shit out this beast.  I know he won't go away, but if I deliver a couple of blows, i'll feel that much more better.  I cherish PF time and never think of when he'll re-surface, but i'm ready when he does :)

My cycle has now been going since May 12th and I have to admit I am getting a little concerned. My first cycle lasted about 75 days, my second was only in the low 20s but it was really severe. I have been kind of getting by thinking its been going on for a while, it'll end soon but now I am not so sure :( Back to the doctors next Monday if I still have em :/

Hey Chuck didn't you drop the 1 before the 9 when describing how long you had been chronic?

I must be one of the "lucky" ones.....
I have started about 3 years ago.....
and it never went away......
for the moment I "drop out" of the
chronic list as I get just about 120
days PF from my tretment.....
But dose it qulifey me now as an
episodic....  I dont realy know....
I do wonder.....

Michael

Stop wondering and enjoy the PF time!