Click this link to read a post I like on the clusterheadaches.com message board...

Bub1031 CH.com Newbie Offline I Love CH.com! Posts: 5	Long remission period? Nov 4^th, 2010 at 4:11pm 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?
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Long remission period? Reply #1 - Nov 4^th, 2010 at 4:16pm No way of knowing! Variation is the norm with CH.
Back to top	Bob Johnson IP Logged

Bub1031 CH.com Newbie Offline I Love CH.com! Posts: 5	Re: Long remission period? Reply #2 - 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!
Back to top	IP Logged

mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: Long remission period? Reply #3 - Nov 4^th, 2010 at 4:35pm I went 2 and a half years before this last cycle that ended(I think) a few weeks ago.
Back to top	IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!! IP Logged

Katie C. CH.com Junior Offline Posts: 44 Northeast Ohio Gender:	Re: Long remission period? Reply #4 - Nov 4^th, 2010 at 5:43pm 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
Back to top	"Flying is learning how to throw yourself at the ground and miss." - Douglas Adams IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: Long remission period?
Reply #5 - Nov 4^th, 2010 at 8:02pm

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.

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Long remission period? Reply #6 - Nov 4^th, 2010 at 10:57pm 2200 days. Potter
Back to top	IP Logged

George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Long remission period? Reply #7 - Nov 4^th, 2010 at 11:40pm 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
Back to top	"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535) IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Long remission period? Reply #8 - Nov 4^th, 2010 at 11:50pm 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
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Click Here to visit the CH.com Facebook page!

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: Long remission period?
Reply #9 - Nov 5^th, 2010 at 7:21am

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

Back to top

IP Logged

thingfishp

CH.com Junior

Offline

Wilco Loves Ya Baby

Posts: 28
Gender: male

Re: Long remission period?
Reply #10 - 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

Back to top

New Haven, CT

IP Logged

his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Long remission period? Reply #11 - 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!
Back to top	« Last Edit: Nov 5^th, 2010 at 1:06pm by his wife » IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: Long remission period?
Reply #12 - Nov 5^th, 2010 at 6:01pm

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! Grin

Jerry

Back to top

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

IP Logged

his wife

CH.com Old Timer

Offline

The sweetest sound is
my children's laughter

Posts: 271

Re: Long remission period?
Reply #13 - Nov 5^th, 2010 at 6:26pm

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

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! Grin

Jerry

haha...true! And I'd do all over again x 10 !! Wink

Back to top

IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Long remission period? Reply #14 - Nov 5^th, 2010 at 6:34pm I'm the sixth child....glad my mom didn't stop at one!!! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Long remission period? Reply #15 - Nov 5^th, 2010 at 10:26pm Guiseppi wrote on Nov 5^th, 2010 at 6:34pm: I'm the sixth child....glad my mom didn't stop at one!!! Joe We are too Joe!!!!!!
Back to top	IP Logged

bradish

CH.com Junior

Offline

Posts: 33
Florida
Gender: female

Re: Long remission period?
Reply #16 - Nov 6^th, 2010 at 7:39am

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!

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Long remission period? Reply #17 - Nov 7^th, 2010 at 11:02pm my remissions last 4 to 5 years usually. currently PF since january of 2008
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Mike Bernardo

CH.com Veteran

Offline

I Love CH.com!

Posts: 231
Chesterfield, NJ
Gender: male

Re: Long remission period?
Reply #18 - Nov 23^rd, 2010 at 9:42am

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. Undecided

Back to top

IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Long remission period? Reply #19 - 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
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Bassplayer Jim CH.com Junior Offline Posts: 43 Pennsylvania Gender:	Re: Long remission period? Reply #20 - Nov 23^rd, 2010 at 12:58pm 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.
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: Long remission period? Reply #21 - Nov 23^rd, 2010 at 1:05pm 10 years this past July.
Back to top	I am convinced that life is 10% what happens to me and 90% how I react to it. IP Logged

-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Long remission period? Reply #22 - Nov 27^th, 2010 at 9:12am Jimi wrote on Nov 23^rd, 2010 at 1:05pm: 10 years this past July. wow jimi did you have long remissions previous to that?
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Long remission period? Reply #23 - Nov 29^th, 2010 at 9:30am 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
Back to top	IP Logged

Jimi

CH.com Moderator
CH.com Alumnus

Offline

Don't feed the moderators

Posts: 4925
Madisonville, KY
Gender: male

Re: Long remission period?
Reply #24 - Nov 29^th, 2010 at 12:25pm

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.

Back to top

I am convinced that life is 10% what happens to me and 90% how I react to it.

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!