Episodic CH dillema

[Nikola]

Hello, I am new to the forum. I've been having episodic CH since 2012. An episode normally lasts 1,5-2 months, I get 3-4 attacks a day. They last from 15 to 25 minutes. Normally in the night, but it can occasionally switch to daily periods. The pain is unbearable as you know. Since CH started I usually had two periods a year, winter and summer. As time passed it came down to once a year, normally winter. Since 2020 they occurred even less frequently on 18 months, and now it has been 2,5 years that the episode didn't occur. And it came back now. My questions is: Is this maybe an indicator that they will be less and less frequent in the future or it doesn't have to mean anything? I was so happy that two and a half years I was pain free and now I am depressed really. I will go trough this of course but really hope that for the next two years might be living without CH. Please share your experience and point some relevant studies if any regarding my situation. Thank you very much. I am 45 by the way, if that is important. 

[Dallas Denny]

Welcome to the community @Nikola, sorry you have the need to join us!!

Unfortunately, the short answer is there really isn't a definitive answer to your question!!

ive been a episodic clusterhead since 84.....42 glorious years now......before I got here 16 years ago my cycles we're fairly predictable.....18 to 19 month remission and 5 to 6 mo cycle usually beginning in August.  But I know many folks that get 2 cycles per year and always have.....the untreated Beast truly has a mind of it's own!!

Couple things you might look at here are high flow oxygen for aborting individual attacks, and the anti inflammatory vitamin D3 regimen to lessen the frequency and severity of attacks.

Dallas Denny 

[Bejeeber]

Hi @Nikola,

I've probably made mental note of this especially since it corresponds to my own experience, but I've seen many report extending remissions as their decades with CH hurl by.

In fact for nearly a couple decades, remissions between my bouts with episodic CH (which started around 1980) were ever-increasing in length, something I imagined that if I'd kept track, those extensions might have correlated to some sort of Fibonacci number series. The bouts themselves extended also though, increasing in length from a couple weeks to 2.5 months, and at some point the attacks increased in severity, with the individual attacks going on as long as 3 hours, compared to maybe 20 minutes or so with my very first inaugural attacks. This increased-severity deal could have been spurred by one truly honking drug cocktail I was prescribed at a point, though imitrex, the most oft-accused drug for causing such issues, wasn't even available then.

I still find myself with nice longgg remissions, but not predictably ever lengthening - I've had shorter ones following longer ones, so no pattern anymore.

The blue 'New Users Raed Here First' banner up top of the page here ^^^^^ provides introduction to the manner in which many of us have successfully thwarted the Cluster Bunny when it comes a 'knockin, and the Basic non-busting information is good too: