My CH never came back :) 4 years today!!!

[Alvaro]

Today marks four years since my first (and, so far, only) CH cycle. It lasted about seven weeks, with two daily headaches at 10 a.m. and 7:30 p.m., like clockwork. I had no idea what to expect and had basically been told to prepare for them to come back at least once a year. But here I am, four years later, still waiting for The Beast to show up again—and hoping it never does.

My first episode was triggered during a flight descent while I had a mild sinus infection. I was pretty nervous the next time I got on a plane, but nothing happened. I was also on edge when the first anniversary rolled around, expecting it might make a comeback, but... nothing 

I’ve never flown with a sinus infection again—not on purpose, it just hasn’t happened—but I still think that had something to do with triggering that first episode. It’s one of those things I’ll probably never know for sure.

This anniversary got me reflecting, though. I’m so grateful for finding ClusterBusters back when everything felt so grim after my diagnosis. It made me wonder—are there others out there who’ve only had one cluster, or who’ve gone years between episodes? 

As for “busting,” I’ve done it recreationally about once a year—sometimes just a little dose at a party, other times a bigger dose while chillaxing with my wife or friends. I do wonder if it’s kept The Beast away, but honestly, I was busting occasionally even before CH, so who knows if there’s a connection.

Cluster headaches are such an unpredictable, personal experience. I hope I never have to learn more about mine firsthand. I feel so lucky to have had nearly four years without them, but I still think about them probably five times a week. My heart goes out to those who don’t get this kind of break and have to deal with The Beast regularly. You’re stronger than most people will ever know.

[Bejeeber]

4 years?! That is fantastique - congrats to you @Alvaro!

 

6 hours ago, Alvaro said:

As for “busting,” I’ve done it recreationally about once a year—sometimes just a little dose at a party, other times a bigger dose while chillaxing with my wife or friends. I do wonder if it’s kept The Beast away

 

I would guess there's a good chance here that the recreational sort of busting during these 4 years could be playing a major role in your remission.

[Inno]

Hate to break it to you,
I've gone 10 years between my 1st and 2nd cycle.

Didn't even know what it was the first time. Dr's never found anything and that was that.
Some time later i learned about CH and wondered if that could've been it.

In march 24 the beast visited again, and i knew right away. 
Although I got treatment pretty fast and the attacks stopped, 

I never stopped shadowing since.
Headache all day, every day... 

I'm almost getting used to it 

 

[xBoss]

9 hours ago, Inno said:

Hate to break it to you,
I've gone 10 years between my 1st and 2nd cycle.
 

Yeah, the beginning 25 years ago was fairly easy. I had a couple week stint the first year and probably only about 4 out of the first 10 years were in cycle. These days I'm fighting a once per year average with twice in a year countering the zero years and the cycle length has reached 100 days. :O

Edited Friday at 08:43 PM by xBoss