Hello, I have suffered from ch for 17 years now. I generally had 1-2 cycles per year. I am almost positive that I just entered a cycle in the past few days. The frustrating part is, I hadn't had a cycle in over 3 years. Has anyone else had a similar lengthy time in between cycles? Could it mean I am possibly outgrowing them?

No way of knowing! Variation is the norm with CH.

Ugh, sad but true....and every time I get the first headache in the cycle it's as if I forgot how bad the pain really is which makes it all the more painful!

I went 2 and a half years before this last cycle that ended(I think) a few weeks ago.

The longest I've ever gone is 2 years from what I can remember. Second was about 18 months when they switched from a spring to fall cycle. Thought I got lucky that year till I got hit in August. LOL

Variation is definitely the norm.

~ Katie

My remissions have become longer and longer as the decades fling by, and I've seen several others report the same phenomenon.

The episodes themselves have become longer and more intense for me also, but all in all I find the long remissions to not be frustrating, but to be very welcome, and in the midst of the chronic sufferers here I consider myself very lucky.  :)

2200 days.

         Potter

I used to have six months between cycles.  Did that for twenty years.  It went to a year between--that went on for another ten.  The last four cycles, I had three years remission each time.

We'll see, I guess.   :-/

Best,

George 

My best was 2 years....I'm hoping for at least 5 this go round!

Not to be nosey...BUT.....do you have a decent regimen to deal with your CH? A good prevent, oxygen etc???

Joe

Bub1031 wrote on Nov 4^th, 2010 at 4:20pm:

Ugh, sad but true....and every time I get the first headache in the cycle it's as if I forgot how bad the pain really is which makes it all the more painful!

It's funny. I was thinking the very same thing not too long ago. I had a hit that woke me up the other night...not much more than a 2-3Kip, but enough pressure to take me out of a sound sleep. For a moment, I lay there stupidly wondering what the heck it was that was going on in my eye, until I remembered, and felt, the hurt. Got up and took care of it with O2, but our ability to forget physical pain is remarkable. God bless! lance

Yes, variety is the norm for sure.  I went 4 years without a cluster and naively thought I was out of the woods.  Starting this past May, my worst ever cycle lasted a good 4+ months with shadows and weird facial numbness and neck headaches (all symptoms I've never had before) lasting until a few weeks ago.  I've got a new neuro who wrote me a scrip for prednisone to start on immediately if I get a hit and can't get in to see him ASAP.  Bless him.  My previous neuro made me wait 3 weeks to see him when this last episode started.  After running out of the little Imitrex I had stockpiled, I had a few weeks of exquisite agony.  Don't know what you take for maintenance meds, but I tried topomax for the first time this cycle and do not recommend this stuff.  I know it works for some folks, but it was devistating for me.  Good luck, George

Wimsey1 wrote: "but our ability to forget physical pain is remarkable."

Ain't that the truth!  Just ask any woman who's given birth.  After 20 hours of the most excruiating pain I've ever experienced, before the days of epidurals (not once but twice), put that baby in my arms and it was truly heaven on earth!   :)

his wife wrote on Nov 5^th, 2010 at 1:01pm:

Wimsey1 wrote: "but our ability to forget physical pain is remarkable." Ain't that the truth!  Just ask any woman who's given birth.  After 20 hours of the most excruiating pain I've ever experienced, before the days of epidurals (not once but twice), put that baby in my arms and it was truly heaven on earth!   :)

At least you got a baby out of it! ;D

Jerry

Callico wrote on Nov 5^th, 2010 at 6:01pm:

his wife wrote on Nov 5th, 2010 at 1:01pm: Wimsey1 wrote: "but our ability to forget physical pain is remarkable." Ain't that the truth!  Just ask any woman who's given birth.  After 20 hours of the most excruiating pain I've ever experienced, before the days of epidurals (not once but twice), put that baby in my arms and it was truly heaven on earth!   :) At least you got a baby out of it! ;D Jerry

;D ;D  haha...true!  And I'd do all over again x 10 !!   ;)

I'm the sixth child....glad my mom didn't stop at one!!! ;D

Joe

Guiseppi wrote on Nov 5^th, 2010 at 6:34pm:

I'm the sixth child....glad my mom didn't stop at one!!! ;D Joe

We are too Joe!!!!!!   ;)   :)

thingfishp wrote on Nov 5^th, 2010 at 12:20pm:

Yes, variety is the norm for sure.  I went 4 years without a cluster and naively thought I was out of the woods.  Starting this past May, my worst ever cycle lasted a good 4+ months with shadows and weird facial numbness and neck headaches (all symptoms I've never had before) lasting until a few weeks ago.  I've got a new neuro who wrote me a scrip for prednisone to start on immediately if I get a hit and can't get in to see him ASAP.  Bless him.  My previous neuro made me wait 3 weeks to see him when this last episode started.  After running out of the little Imitrex I had stockpiled, I had a few weeks of exquisite agony.  Don't know what you take for maintenance meds, but I tried topomax for the first time this cycle and do not recommend this stuff.  I know it works for some folks, but it was devistating for me.  Good luck, George

I agree George.  I was on Topax 2 years ago and don't recommend it either.  It didn't work and I blacked out from it.  Oh man, did I feel terrible.  For the first time in my life I was depressed.  Bad stuff for me.  Hope you found something that works for you! 

my remissions last 4 to 5 years usually. currently PF  since january of 2008

I only had my first "documented" CH last October through March. Had dx in January. I was happy that I had 6 months between attacks, though I did have some shadows over the summer. I found my pain points, generally, alcohold (duh!), dehydration (lots of H2O when I work out), and excess stress. Based on the seasonal changes from summer to winter (where is fall?) and the fact I fly every week now, I expected this attack, which started 2 weeks ago and hit a high tempo last friday. Hang in there. The fact you're in pain means you're still alive, if that's any consolation.  :-/

Hang in there. The fact you're in pain means you're still alive, if that's any consolation

A good mental attitude is so important in beating the beast, hang in there.

Joe

My longest remission was 9 months (from Aug. 2009 through May 2010) -- followed by three cycles in the six months since.  Certainly not any discernible pattern I can detect with me.

10 years this past July.

Jimi wrote on Nov 23^rd, 2010 at 1:05pm:

10 years this past July.

wow :o jimi did you have long remissions previous to that?

Guiseppi wrote on Nov 23^rd, 2010 at 9:49am:

Hang in there. The fact you're in pain means you're still alive, if that's any consolation A good mental attitude is so important in beating the beast, hang in there. Joe

True, and truer still! lance

Quote:

wow  jimi did you have long remissions previous to that?

Yes...the last two remissions were 3 years apart, but the cycle itself during that time went from 2 mos to 6 mos. Both times I feared I was going chronic.

We will see if they are over or if I am just in an extrtemely long cycle. I am 62 years old. They started when I was 21 yr old.

I'm mirroring Jimi, my cycles are getting longer....and farther apart, I'm 50, my last remission was 2 years followed by an 8 month cycle......really looking forward to a 10 year remission! ;)

Joe

I sure hope that you get it brother.

My very worst cluster, measured in pain and length, was at about age 50. Then almost zero attacks, just a few random single minor attacks until age 58. I retired 4 years ago at age 59 and since then I've had clusters every January thru March each year. These are very minor compared to earlier in my cluster career. Maybe I need to get another high stress job.

Nah..that ain't gonna happen.