For those of you who made the transition, how did it happen/how did you know? I don't want to join your club. What's the name of that river in Egypt?  ;)

Clockwork episodic since '91. For a little over a year I've been having kip 2-4 shadows almost daily.  Mainly just shadows, Only about a half dozen above a kip 7. I skipped my normal Fall and Spring episodes.  Not even alcohol has triggered a response from the beast (said as I try to dodge the lightning bolt).

Seems like the intensity and frequency has been slowly ramping up over the last few weeks.  Although to qualify that, I'm on day 11  :) (and pound 11 >:( ) of quitting smoking (Chantix).

Curr Pain Headache Rep. 2002 Feb;6(1):65-70.  

 
What predicts evolution from episodic to chronic cluster headache?

Torelli P, Manzoni GC.

Headache Centre, Institute of Neurology, Strada del Quartiere, 4, Parma 43100, Italy. paolatorelli@libero.it

Over the last few years, attention has increasingly been focused on the evolution of cluster headache over time. Predictive factors have been identified that are correlated with an increased risk of unfavorable evolution from the episodic form to the chronic form of cluster headache. Late onset, the presence of sporadic attacks, a high frequency of cluster periods, and short-lived duration of remission periods when the headache is still in its episodic form all correlate with a possible worsening of the clinical picture over time. The reasons for evolution of episodic cluster headache to chronic are still unknown, but some factors, such as head trauma and other lifestyle factors--eg, cigarette smoking and alcohol intake--have been suggested as having a negative influence on the course of cluster headache over time.

PMID: 11749880  
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J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.  


Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.

Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

PMID: 16362185  

I agree, I don't want to join that club.  The day I do join that club is the day I will be locked away.   :D

went from episodic to chronic 14 years ago dont know why

I was chronic from the start.   :'(

Episodic to chronic, about 5 or 6 years ago....reason? Hmmm, may be controversial but excess use of Imitrex and Verapamil.

But after some time you get over it. You live your life as normal as you can. I currently use Frova for its long half life. Most of the time half of one is enough to kill it. I chew on it and put it under my tongue for faster action.

How do you know? Well, you know when those 4-6 weeks have passed and it has been years since you were symptom free. You know.

In my case the cycle just went on and on and on until I had to admit that it had been going on over a year and there was no end in sight.

Sanna

In '97 I had an episode start and to date it just hasn't stopped.... No rhyme or reason -- it just kept on keeping on...

Don't bring on trouble -- wait a year and then worry..... if it's still going on then you'll know you're chronic.... You adjust and you live your life....

Most chronics I know have an attitude that this damn beast is tuff but we're a hellalot tuffer... I know I am....(most of the time).

Hugs BD

Grinner62 wrote on Jun 3^rd, 2008 at 11:48am:

Clockwork episodic since '91. For a little over a year I've been having kip 2-4 shadows almost daily.  Mainly just shadows, Only about a half dozen above a kip 7. I skipped my normal Fall and Spring episodes.

Unfortunately Grinner sounds like you might have crossed the line.  My experience is just about like yours.  Right now I'm having an upswing which was explained to me as maybe a "cycle within a cycle" or high cycle.  I wish you the best of luck.  Personally, I'm exploring lithium as chronics appear to have some luck with this maybe in combination with verapamil.

John  :-/

Grinner,

I have been clockwork episodic for 20 years--NEVER used to get any shadows between headaches--after my last cycle I now frequently do--I have even had some bad ones that kept me up at night and was 95% positive I was ready to go into cycle--but they have never evolved into headaches.  For me, the biggest trigger is when my sleep schedule gets thrown off--could be by only half an hour.  Don't know why I am no longer shadow free between cycles.  Anyway, if you are quitting smoking, maybe your sleep schedule is getting thrown off a little?  That is great you are quitting smoking though--keep going with that!!!  let us know how things go.

Grinner,

Best news of all is ya quit smokin'. Have no idea of any connection with CH, but the benefits are enumerable.

Actually a good question which I pondered myself for years. Thing is, there is no way to know EXCEPT time. Myself, I was episodic for 20+ yrs and dreading chronic status. Used to be so friggin regular (6-8 wks on, 6-8 off) I always knew what to expect. Then it started morphing, and I knew not what to expect. 2 yrs ago a cycle started and has just never ended. The beast, he/she/it/whatever is such a damn "squiggly bastard" there is no predicting. Everyone's different.

I deal with "chronic" poorly at times and other times just don't give a s**t. Just dancin' as fast as I can (literally and/or figuratively). Only you can determine how YOU react. I pray for all of us.

Regards

Jon

Chronic is much easier to handle, I did it for 31 years!

wrote on Jun 4^th, 2008 at 10:12pm:

Chronic is much easier to handle

I'm beginning to agree; when I was chronic, I was able to handle things bit better, because I knew that the hit/s will come at some point during the day and did what had to do when I could. When ch went into remission and then turned episodic again, I've had much much harder time keeping it all together for some reason. I dislike uncertainty, so that's probably it.

Sanna

This beast has no rhyme or reason to it; I had one cycle back in late 1999 that lasted for 12 weeks & then had nothing for 5 years, it returned in late 2004 & belted me for another 13 weeks & quite simply never went away.

I agree with the others that being chronic is easier to handle, at least you know that at any time you can get belted again but you are prepared for the battle.

Cheers
Barry

Common denominators;
Sleep schedule.  I got diagnosed with sleep apnea about the time I started noticing a change. CPAP machine makes it so I actually sleep through the night.

My 18 y/o son telling me he got his 17 y/o girlfriend pregnant hasn't helped my sleep patterns lately.

Nicotine low light could be part of the intensity increase. Last time I tried to quit was just before the worst episode I have had. I'm on day fourteen and the weight gain has stabilized at plus 8 lbs.

I'll try Melatonin for a while, I haven't been getting night hits so hadn't considered sleep schedule anomalies. If those trees would have gotten out of the way, I might have seen the forest.

I can kinda see how chronic would be easier. Constant threat means minimal surprises. Assuming it doesn't turn into my typical (episodic)  3-4 hour Kip 9+ HA's 2-3 times a day. That's the big fear of the word chronic.

Grinner,

aguess now it's the time to prepare for the worst, but most of all: wish for the best!  [smiley=hug.gif]

Sanna

Thanks for the hug, Sanna.

You're welcome. :)

PF days,
Sanna

That is one of my biggest fears, to become chronic. Not that I worry about it all the time, but when in cycle it crosses my mind frequently.
Some of you guys said it was easier to handle when chronic.... could you please elaborate on that?
Are you being hit daily with nasty ones, or every couple of days? What should I imagine it to be? Are the triggers constantly on the lurk? To me that would mean I could never drink a beer again, go out in bright sunlight or wear deodorant.
How do you handle those?

maalstroom wrote on Jul 6^th, 2008 at 8:47am:

Some of you guys said it was easier to handle when chronic.... could you please elaborate on that?

First, there are no doubts anymore if the beast will come back or not - to me this makes a big difference.
I still have some kind of cycle (less hits / more hits) but the overall number of hits per day and the intensity is (at least for me and contrary to my episodic past) far more constant.
Second, the average intensity of the hits seems to have dropped a bit (not sure if this is the case for other chronics as well).
Third, you simply "get used to it" since it becomes a part of your day to day life / a part of the daily routine.

Oliver

One day at a time my friend.  I also believed that chronic CH would be too horrible to imagine.  But those of us posting here, myself included are really just warriors and survivors.  

For me the diference is in the predictability of the hits, and many of the hits are of lower intensity now that I'm chronic instead of episodic.  When I was episodic my cycles were random, intense, and it seemed they stole part of my life.

I have had daily CH since Feb 2005.  I usually have 4  CHs per day, ranging from Kip4 to Kip7.  I can count on one before 9 am, one around 11:30 am, one around 2pm and one between 5 and 7 pm.  At least I have an idea of when their coming and keep what I need on hand.  

No matter what, CH is not for wimps.  Y'all are some of the strongest, toughest folk on the face of the planet.

PFDAN y'all,
kathy

Episodic for 20 odd years, and then chronic for the last 8 or 9 (I'm getting too old and senile to remember! LOL)

When I went chronic, unlike others, mine got substantially worse.  Some of my worse hits and series of hits have been since going chronic.  BUT, I still think it is easier being chronic.  When you are chronic, you KNOW you are going to get hit many times, every day.  You adjust your mind around that, and if you are as pigheaded as Svenn and Cathi say I am, you refuse to let the beast ruin your life.  You adjust to it, and continue on.  It is NOT a death sentence, as so many of you episodics think it is.  ONCE you go chronic (IF you ever do) you just deal with it.  Life still goes on.

I KNOW that EVERY day, I am going to get nailed, some times up to 15 or 16 times a day.  But you know what?  I am STILL here (much to many's chagrin), and my life is STILL continuing.

Is it hard?  YES!  I won't lie to you, BUT, it IS doable, and still better knowing that you will get hit.  You have your weapons of destruction always at hand.  You have shifted your life so that you can take a pause, and deal with the hit, and then continue on as normal!

To me, and to most chronics, it is FAR harder to be painfree for a while, and then have the dread and fear of the cycle starting up again.  You get used to ignoring the beast, and then all of a sudden, the beast is back.

Hell, even cranky, cantankerous, ornery, and OLD Barbara (bless her heart) deals with it!  Heehee ..

One interesting benefit, of being chronic, is that MOST of us chronics CAN drink booze!  Most of us are not as sensitive to it like you episodics are!

Life can still be beautiful and fulfilling, even if you are chronic.

Chuck

Gizmo (I have an albino ferret with the exact same name), Kcopelin, Chuck.... how about other triggers like daylight, perfumes, deodorant, anything? Are those managable as well, or do they dissapear, get worst? Aah so many questions, forgive me! How about work? Social life? Sorry, don't mean to intrude or anything, just really curious...if I was a cat I'd be dead and stinkin' up to high heaven by now.

P.S. If I rename some of my ferrets to Kcopelin and Clusterchuck, we'd have a set.

The only triggers for me (that I'm aware of) are red wine, Aspartam and MSG and there wasn't any change at all when switching from episodic to chronic.

IMHO work and social life are better now - I guess it's because of the mentioned "routine".


Quote:

Sorry, don't mean to intrude or anything, just really curious...

Hey, no problem.


Quote:

P.S. If I rename some of my ferrets to Kcopelin and Clusterchuck, we'd have a set.

A ferret named Clusterchuck - that thought has something to it  ;D

Oliver

maalstroom wrote on Jul 7^th, 2008 at 4:21pm:

how about other triggers like daylight, perfumes, deodorant, anything?

That is something that I can't answer.  I have never noticed any of those as being triggers for me, either as episodic or chronic.




maalstroom wrote on Jul 7^th, 2008 at 4:21pm:

How about work? Social life? Sorry, don't mean to intrude or anything, just really curious...if I was a cat I'd be dead and stinkin' up to high heaven by now.

As far as work goes, I happen to have been one of the lucky ones.  In all the jobs I have had (four of them in 29 years of CH) I have lucked out and had companies that were VERY good in working with my "little problem" of CH.

Work and social life are easier now, even though my clusters is MUCH worse now then way back when.   But I don't think it has to do with being episodic or chronic.  It has more to do with this site, teaching me NOT to let the beast to ruin my life.  "Don't dwell on the hits, dwell on the painfree time between hits!"

And ASK away!  We LIKE dead, smelly cats here!

Chuck