Has anyone here been a long-term cyclic dancer with the beast, and noticed fading cycles, that eventually led to total remission? I read somewhere about 8-9 years ago that, statistically, once you get CH, you're stuck with it for at least 20 years, but more likely for life.

I've had relatively predictable, regular cycles since 1991 (maybe earlier...didn't want to keep of journal of this hell on earth, so not sure) and since around 2006 I have noticed erratic, irregular CH, with shorter duration of the cycles, shorter CH, weaker and sometimes non-existent back-ground pain, and longer remissions of 12-24 months. I'm curious if anyone else has experienced something similar that eventually ended their CH altogether. I do understand that remissions can last for several years or more before a cluster starts again, but I was once a 2-3 cluster/year sufferer, 3-4 month cycles, 3 CH/day, usually lasting about 4 hours, 6-7 days/week. Remissions would rarely be over 6 months, usually 3-4 months or less. My last cycle started in August, lasting 3 weeks, if I recall...this one started in November (2 weeks ago)...15 months apart, go figure.

My current cycle has been as in recent years: unorganized, weak intensity, no back-ground. Back in the bad ol' days, they would be full-blown and timex-accurate within less than a week. Now, 3 days in a row, 3 CH/day, but timing varied somewhat, as did CH length/intensity, from 30-60 minutes. I did get beat-up pretty badly about 24hrs back for an hour or so, then suddenly, no pain...but the worst pain in years (easily Kip 10). Then today: nothing all day today until 6:00 pm tonight. This one lasted 2 hours...1st hour was Kip 8-9, then the last hour Kip 5-6 and morphed a lot...felt like ocean waves crashing from front to back at about 5-second intervals, with an occasional cork-screw wiggle now and then, and a slew of other short, less noticeable sensations...not super-intense, but it really played with me a lot while I tried to cope (just the beast F'n w/me, right?). It ever so slowly faded to a back-ground (what I fear the most, as I feel this cycle likely will be with me for a while, but, I have been wrong before). Oh, and all these years, pain has been one-sided...never changed.

I've been non-RX all the way to this point in time...I have a high-tolerance for pain, but it does wear me down...mostly just exhaustion. I was hoping that my changes in CH may be an indication that I'm on the downhill side of this...starting to think otherwise, and my hope is fading. Last night's brutal reminder of just how bad this really gets was about all I could handle for one day....tougher to play well when you haven't practiced the game lately, I guess.

Anyway, knowing that for every cluster-head, cycles and remissions can differ widely, as well as what works for aborting, relieving/reducing pain, etc, I'm really curious if there is hope for anyone who has experienced CH like I have, for so long...will/can it ever end after more than 20 years? Again, just because 2 or 3 say they've been PF for 10 years doesn't mean I will be, but any hope or chance at all is better than none.

Thanks! Looking forward to hear from you!

I suffered from CH's for 43yrs, then in the Spring of 2012
age 69, I started taking the vitamin D3 regime, and been
CH free ever since, so wether the  would
have moved on by his own accord who knows.

Hoppy

Mine have changed too. It didn't start till I was 57 and I'm 64 now. I used to have 2 cycles a year, HAs could be timed to the minute, full blown screaming pain,  6-8 HAs a day and cycles lasting 4-6 weeks.

Now I don't seem to have real remissions at all, HAs are very sporadic - nothing one day then several the next then nothing for 3 days, then a "one off", and always with shadows in between. And that's how it goes on.
BUT, the individual HAs are much milder. It's  the same kind of pain, in my temple, jaw and teeth accompanied by the runny eye, droopy eyelid and stuffy nose but down to about kip3 on our scale (see the kip scale - tab on the left of your screen).

This is more constant than it used to be and it's frustrating that I'm rarely completely pain free, but I think I prefer it this way. It's far more tolerable.
Maz.

my CH started when i was about 25, typical symptoms and i had a month long cycle pretty evenly spaced twice a year. Usually 1-3 headaches a day. I found out early on that oxygen helped from a co-worker (has CH) and informed doctor (daughter has CH) that both told me to try it. i also started taking immitrex pills until years later i tried the much more effective shots. I still have yellow and thin enamel on my teeth from all the vomiting.

about when i turned 34 i started getting the clusters alternating months from November through July or august. 3-4 bouts per year with each lasting 4-6 weeks with 4-6 weeks in between. 3-6 headaches per day. Life was hell.

About 38 years of age i went on the Vitamin D regimen and in the last 2 years have had just a single month long bout (and right after a very short 2 week one) . i tried kenalog injections in the back of the neck. They helped a little, but only a few days. The headaches seemed somewhat less with only a few real killers. 2-4 per day with one really bad one.

I am currently ready to throw away thousands of dollars worth of immitrex that is 4-6 months expired that i thankfully never had to use. The Vitamin D is a life saver!

I appreciate the well wishes

I totally understand that immitrex is expensive, but i can't give it to anyone. That is illegal in the US, and i am a LEO.

I have a bunch of current dated immitrex that i keep in reserve, JUST IN CASE! At times i can feel some shadowing, but the headaches never came. I am too afraid to not keep refilling now and then, even if it is not as often as before.