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 can't quote on this leading to total remission, old mate, but I could otherwise have written that post myself.

My cycles now are so short as to not matter. Individual hits are so small that I wonder if I shouldn't delete my profile here at ch.com.

Is it age and we're just growing out of it? Are we just getting tougher, or so silly we don't recognize the pain.

I gave away all those medications years ago, best decision I ever made, and things have slowly been getting better ever since.

Great to hear you're comfortable and planning for the future.

Cheers and beers,

Brian down under.

23YrSurvivor,

I've had CH almost as long as you and blew through 70 like there was no tomorrow... but I've still got'em.

The cool thing is I don't have any CH attacks as long as I stick with the daily anti-inflammatory regimen consisting of at least 10,000 IU/day vitamin D3, Omega-3 fish oil and all the vitamin D3 cofactors.

I've spent the last 9 years studying everything I can find on cluster headache, and I've read more studies than I'd care to count.  I've also met one-on-one with some of the brightest minds in neurology specializing in the treatment of CH. 

I've learned what makes oxygen therapy work effectively and rapidly... (I hold a patent on the oxygen demand valve method of aborting CH), and since 2010, I've learned not only the benefits of vitamin D3 and the vitamin D3 cofactors, calcium, magnesium, zinc, boron, vitamin A (retinol) and more recently vitamin K2, but also some of the physiology behind their effectiveness in preventing CH.  Still learning here...

The hit and miss nature of your CH attacks/cycles is likely due to fluctuations in your serum concentration of 25(OH)D, the first metabolite of vitamin D3 that's used to measure its status.

See your PCP or neurologist for a lab test of your 25(OH)D, a.k.a. 25-Hydroxy Vitamin D3...  I'll wager a Coke & Candy Bar your serum concentration of 25(OH)D will come back from the lab indicating less than 40 ng/mL.

As CH'ers we need to keep our 25(OH)D between 60 and 110 ng/mL and shoot for a target of 80 ng/mL.

You can read about the anti-inflammatory regimen at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You can read what other CH'ers are saying about their experience with this regimen at the next link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link has been viewed more than 250,000 times since I started it in December of 2010.  We've over 600 CH'ers taking this regimen and better than 80% of them have experienced a significant reduction in the frequency, severity and duration of their CH...  60% of them are completely pain free.

At ~ 40 cents a day, this is a very safe and very healthy regimen of vitamin and mineral nutrients with no real down-side.  It's significantly less expensive and a lot more healthy for you than shooting up with triptans...

Take care and please keep us posted.

V/R, Batch

I have no exciting story to relate. Started Cluster about age 40, tapering rapidly to zero about 70.

Never had cycles. Attacks werre fairly regular and started reducing in frequency around 60. The only "benefit" was that attacks were 90% during evening hours so that I had no interference with daytime activities.

I used the standard recommended Rx used in those years, statins having not appeared.

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  [smiley=evil.gif] would
have moved on by his own accord who knows.

Hoppy

There is hope!  My toughest years have been the last 17.  The cluster headaches were pretty much on an 18 month cycle.  They start very irregular at the beginning of a cycle, become like clock work in the middle, then become irregular at the end. Cycle usually 4 months total.  However, it has now been 2 years and no start of next cycle!  Am I just lucky?  Don't know yet.

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.

What if the serum concentration is over 110 ng/ml?

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!

Expired immitrex still works and it's extremely expensive. Please don't throw it away. There are so many poor folks who suffer badly because they can't afford it. Is there no one near you that you could give it to.

Check out the tab on the left of your screen "where we live". I'm sure someone will be very thankful to have it.

I'm so glad the D3 is workingfor you - long may it last.But I would suggest getting a couple of fresh injections to keep on hand just in case.
Maz.

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.

want2ride wrote on Dec 20^th, 2014 at 4:24pm:

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.

Smart move!

I was 14 years chronic, started the Vitamin D routine and became almost totally free of CH's within a few weeks - for about a year and half. Then, a couple of months ago: WHAM - back to full blast at 9:00 AM, 7:30 PM and 70 minutes after falling asleep every night.

Never assume that the battle is over......

Marc