Hi Ch'ers , long time no post from me..
I was just wondering if anyone else here had swapped from chronic to episodic..
I have been chronic for 8 years since being diagnosed and typically would NEVER go more than 2 days without a hit .. i would still have "cluster cycles" where the hits were a lot worse but there was no pattern..

Then this time last year they got particularly bad. all being kip 9/10 and coming pretty much every 2 hours day and night..

Then i saw dr silver, and was given a pred taper.
This was last october and the hits stopped that very day and i didnt have another until a couple of weeks ago (when the clocks changed) when they hit me full on every 3 hours again..

I started a pred taper 4 days ago now and have been pain free since thank god.

So my question is - has anyone else ever changed from chronic to episodic - and for the episodic people, does the clock changes affect you by bringing on a new cluster period.
hope alls well (as can be) with everyone and wishing you all pfdays  :D

The chronic part of your question really isn't applicable to my own situation, Chop, since I've always been episodic--but I just wanted to stop by and say "hi".

As far as the episodic part of your question--yes, the timing of my cycles has always been very closely related to the time of year, with most cycles beginning in May or in October.

Good to see you posting again--especially with positive news.  :)

All the best,

George 

Thanks George :)

Yes it looks like im newly discovered episodic now which i am over the moon about..

I know it is a debated issue wehter its "best" to be epi or chronic but i must say the answer is DEFFINATELY episodic.
The last few months of being pain free have been like a dream come true. I dont know how anyone could prefer to be constantly hit.

I have a freind who has CH also and he is episodic and his cluster just started pretty much the same few days that mine did a couple of weeks ago..

Isnt it strange lol, Dr Silver says his clinic gets hammered around may and october by ch crew ..

Im just so very glad that the pred is so effective for me because i think i could handle the beast and accept it a bit better if i knew when it was coming, and that i had a tool to kill it in its stride..

has anyone else started on cluster recently ?? and also, once the pred taper is finished - is that normally the end for the cycle, or could it come back  :(

I switched to episodic last year after being chronic for 1 1/2 years. Prior to that I was episodic for 8 years. My episodes are really random and have never followed in specific pattern. At one point I was having episodes for 6-8 months with a 4 month remission period, then I was going 1 month on and 1 month off, and now this cycle has been going for three months. My episodes also don't occur around the same time each year, random again.

The clock change has never made a difference, although when I travel across time zones and change my sleep pattern, I might have a day or two w/ out a CH.

Currently I am on the D3/Omega 3 regime and have been PF for two weeks (minus a trigger CH from sitting around chlorine for too long). If you haven't tried the regime that Batch posted on, I would suggest trying it.

See 2nd abstract:

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 

"the rarest form is episodic CH arising from chronic CH."

iv always been a bit of a rarity lol