From the time that my CH's started in 1983 until my last cycle prior to the one I am in now I always had somewhat of a handle on when to expect a cycle to start.  Cycles were anywhere from 10 to 14 weeks with a remission period of 10 to 18 months.

When I was finally diagnosed with CH my neurologists told me that many people outgrew them in their late 50's.  So, when I didn't have the cycle I expected a couple of years ago when I turned 60, I thought maybe I had outlived the beast...yeah..riiightt....

I did make it PF for almost 4 years before the start of this cycle. The timecycle for me has always been 5 to 7 weeks from the first "twinge" to the start of the peak, with the peak usually lasting another 5 to 6 weeks with 6 to 10 hits a day.  For me, it has always been like someone "turned off the water faucet", it goes from the 6 to 10 hits one day to maybe only 2 the next, then a PF day followed by 1 hit, a couple of PF days and then 1 hit and the cycle is over.  Usually no more than a week from end of peak to end of cycle.

The difference in this cycle is that after having that predictable end of cycle week, the hits have now started up again and seem to be building in frequency and severity!


After reading so many peoples storys about becoming chronic with CH, I gotta admit to having some real fear right now.  And to top it off, my wife is a hospice nurse and she got a new outpatient last week with history of CH.  He was episodic til his late 50's then went chronic until at 68 they just stopped. He has now been PF for over 10 years.

I know the beast has his way with us in all different manners but was just curious others experience that have gone from episodic to chronic.

Wishing for PFDAN's for all

Dallas Denny

And nothing has changed since this article was written...

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.

Publication Types:
Review

PMID: 16362185 [PubMed] 
========

Your best line of defense is to have a good treatment approach working for you and talk yourself out of efforts to predict the unknowable future.

Dallas Denny 62 wrote on Nov 9^th, 2009 at 10:16am:

From the time that my CH's started in 1983 until my last cycle prior to the one I am in now I always had somewhat of a handle on when to expect a cycle to start.  Cycles were anywhere from 10 to 14 weeks with a remission period of 10 to 18 months. When I was finally diagnosed with CH my neurologists told me that many people outgrew them in their late 50's.  So, when I didn't have the cycle I expected a couple of years ago when I turned 60, I thought maybe I had outlived the beast...yeah..riiightt.... I did make it PF for almost 4 years before the start of this cycle. The timecycle for me has always been 5 to 7 weeks from the first "twinge" to the start of the peak, with the peak usually lasting another 5 to 6 weeks with 6 to 10 hits a day.  For me, it has always been like someone "turned off the water faucet", it goes from the 6 to 10 hits one day to maybe only 2 the next, then a PF day followed by 1 hit, a couple of PF days and then 1 hit and the cycle is over.  Usually no more than a week from end of peak to end of cycle. The difference in this cycle is that after having that predictable end of cycle week, the hits have now started up again and seem to be building in frequency and severity! After reading so many peoples storys about becoming chronic with CH, I gotta admit to having some real fear right now.  And to top it off, my wife is a hospice nurse and she got a new outpatient last week with history of CH.  He was episodic til his late 50's then went chronic until at 68 they just stopped. He has now been PF for over 10 years. I know the beast has his way with us in all different manners but was just curious others experience that have gone from episodic to chronic. Wishing for PFDAN's for all Dallas Denny

Jeesh Denny .....I hope the best for you.   My cycle is all over the place this year, just like yours, I never know what the day/ night will bring.  I suspect that is because I have been trying some different things--Taurine, kudzu, vit D   etc...who knows why, but it seems like a few others are irregular this year too.
    I usually don't start mine till october, and this year it started mid july.!
    My biggest fear is turning chronic, so your not alone, Lets just hope for the best....I was pain free for seven years one time! 
   So Its anyones guess.    Hope you get a break real soon     . :)           lorac

I don't know what's going on with me as well.  I saw my neurologist the other day and he says there is 'no chronic' in clusters, to which I adamantly disagree.  He's suggesting CPH.  I guess trying the Indocin would tell me that.  Anyway, I've been using Kudzu with a certain degree of success.  However, yesterday at work I had this black spot in my vision (left eye), which I've never experienced before.  It went away, but an hour and a half later I was hit with a monstrous attack.  I've never ever had an attack at work...mine are always at night during sleep.  So it's interesting to hear that others are experiencing differences in regards to their cycles.

I, too, am scared and curious of the episodic going chronic phenomenon.  The members in my family that have not used a preventative, only an abortive (Imitrex Injections) have maintained or decreased their regular cycles over the years.  Those of us who have used preventatives seem to be having irregular cycles.  To me, the only good thing about my clusters were that they were very dependable on a schedule and over when they were over, but not so much now.  Still exploring this.

grace wrote on Nov 12^th, 2009 at 9:56am:

..I saw my neurologist the other day and he says there is 'no chronic' in clusters...

Sigh. What is with these bozos?  :(

Denny,
  I thought I was chronic two years or so ago, when I had HA for over a year.  i had given myself up to the idea that they would never go away, and was trying to figure out a way to live life happily without that light at the end of the tunnel.  Then after about eighteen months, they just went away.  Dont jump to the conclusion that youre chronic just yet..  Could be just a longer than usual cycle.

christine

Thank you, Christine for that uplift!

I can't imagine how the chronics do it. You guys are amazing. Going chronic is a huge fear for me too. So much so that I usually refuse to even hang out in threads that discuss being chronic.
I guess if it ever happened I would figure out how to survive like others do but I don't even want to see that bridge let alone cross it until I get there!
On that note, I'm outa here!   ;)

I have dealt with these things for 25 years now. I'm episodic, although I went through a chronic period early on. I've found something that frightens me more than going chronic.
Heretofore, mine have been virtually exclusively a nighttime phenomenon. I've prided myself in the fact that in 20 years of teaching, I'd missed only a couple of days of work due to clusters. After 18 months of remission, I'm 3 months into another cycle. The truly scary thing is that I've begun having them during the school day. The last three weeks have seen me run to the bathroom for my Imitrex shot, and I've had to go home three times. A continuation of that pattern scares me more than dealing with night headaches on a chronic basis.  :o

There's no need to fear the transition from episodic to chronic.
1st: nobody knows if it will happen
2nd: you can't do anything about it anyway
3rd: you learn to deal with it just as you learned to deal with the episodes in the past
4th: being chronic is easier - you'll never forget and you're always prepared

:-/ :-/Hi to you all,
I have suffered with CH since the age of 19, and on the 9th November I turned 50. (I had a 50th birthday party on the 7th and arrived 2.5 hours late to my own party because, yes you've guessed it...the dreaded CH hit) At first they would return 18 months from last episode. Over the years this stretched to 24 months, then a gap of 3 years. I am now a month in to a cycle, the unusual thing this time is that they started in October which has never been the case before, as in the past they would always start between February and May. Having not had them for 3years I had started to think come September that this would stretch to 4 years. My father who suffered them also has been pain free for some 10 years (now in his early to mid 70s) so I hope for him they are not to return during what I hope will be many years of life for him. Then in early October I felt the 1st sign that they were on their way back. Now I am at a loss as to how long this period will last, will this one be the usual 3 months of hell.............or will it be longer. In addition there is no set pattern for an attack, they can occur at any time day or night with multiple attacks during the day when they peak. ( yes the events that have me wanting to cry like a baby, even when I try to convince myself to be strong and tuff it out in a man like fashion, but thus far I have been unable to be such a man) I am interested to see that a number of people are also finding that their CH trauma are staring at times not experienced before.
I am new to this site and I am so pleased to have found it, as I now no longer feel alone, as no one understands what a CH is like unless you suffer them or live with someone who does.

Phil (London England)

gizmo wrote on Nov 14^th, 2009 at 2:30pm:

There's no need to fear the transition from episodic to chronic. 1st: nobody knows if it will happen 2nd: you can't do anything about it anyway 3rd: you learn to deal with it just as you learned to deal with the episodes in the past 4th: being chronic is easier - you'll never forget and you're always prepared

Amen .. being chronic is easier.. I'm always prepared.. expecting.. and I have an incredible pain threshold for CH and pretty much anything else that can bring one pain. I went chronic in Nov of 2007.. I was always an Aug-Oct episodic sufferer until Nov 1.. I knew that day I had not yet finished my cycle and this was the longest one I had had..

I still stay in the 5,6,7 Kip range through most of the year.. but the past few months I've been hit, as has my living room wall, with quite a few 9's  and a nice 10 to boot.. brick doesn't break.. haha!!   I;m thinking about going back to episodic again.. just for a few years.. I've been talking it over with him.

Phil (S) wrote on Nov 16^th, 2009 at 1:00pm:

:-/ :-/ I am new to this site and I am so pleased to have found it, as I now no longer feel alone, as no one understands what a CH is like unless you suffer them or live with someone who does. Phil (London England)

it sure does feel go huh. It makes all the difference

Jrcox
:D