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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> thought they were over
        
(Message started by: guy_in_camo on Jan 30^th, 2006, 2:46pm)

Title: thought they were over
Post by guy_in_camo on Jan 30^th, 2006, 2:46pm

...thought they were gone 5 yrs and they back...anybody go that long brfore??

Title: Re: thought they were over
Post by Kris_in_SJ on Jan 30^th, 2006, 7:34pm

The thing about clusters is ... they almost always come back.

I'm a 4-5 year cycler also. It's not unusual. Just be grateful that you have so much PF time between!

Hugs,

Kris

Title: Re: thought they were over
Post by Lietuvos on Jan 30^th, 2006, 7:36pm

Never gone that long without....longest i've gone without is 10 months. hate to be the barer of bad news....but, i was informed i will suffer the rest of my life. hope you can go another five years...or longer. Maybe stress or something new you are doing caused them to reappear.

Title: Re: thought they were over
Post by Barry_T_Coles on Jan 30^th, 2006, 8:21pm

on 01/30/06 at 19:34:44, Kris_in_SJ wrote:

The thing about clusters is ... they almost always come back.

I'm a 4-5 year cycler also. It's not unusual. Just be grateful that you have so much PF time between!

Hugs,

Kris

I'm the same as Kris; 5 year intervals and usually late November through to February, next round with the Demon 2010.
Glad you found this place your in good company here.

Kind Regards
Barry

Title: Re: thought they were over
Post by Guiseppi on Jan 30^th, 2006, 8:37pm

I just finished a 2 year off cycle. I convinced myself since I was 45 maybe I'd finally outgrown them. They always come back. Just had a 75 year old break my heart on the board. They haven't left him yet, they always come back. On the upside, the board is always here!

Guiseppi

Title: Re: thought they were over
Post by floridatwo on Feb 2^nd, 2006, 10:02pm

I wish I had better news, mine lasted from age 28 to 60. Just turned 63 and their back. I'm not having as many in one day but the duration of the ones I do get ranges between 3 to 5 hours. Thanks to everyone for this site.

Title: Re: thought they were over
Post by Mike_in_CA on Feb 2^nd, 2006, 11:04pm

I too had hoped I'd "outgrown" them since, at 43 I had been PF for 8 years. Unfortunately my CH's have come back with a vengence, like they were storing some evil energy for all this time.

Good luck with your fight...and enjoy the PF time that you have. I couldn't imagine having these things chronically.

Title: Re: thought they were over
Post by Bizz13 on Feb 4^th, 2006, 8:34am

2 years, Wow it was nice not to have them but now ther back and just as bad as ever! my wife almost forgot how bad they hurt me,she got up at 5:30am and i had one .she ask me if i was ok and i said ther back!OHH NO!

Title: Re: thought they were over
Post by shenke on Feb 4^th, 2006, 11:07pm

Yes, was pain free for 4 1/2 years, never thought they would have returned. Luckily I found this site, it has helped me so much. I hope you can get the help you need ... there are so many great people here , with such dedidication. Good luck to you....Sheila

Title: Re: thought they were over
Post by RDubois on Feb 5^th, 2006, 1:11pm

[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]I may be the 75 year old that is breaking Giuseppi's heart. Sorry. I too had been 2+ years since my last episode. My cycle broke gradually 2 weeks ago. I'm confident that I can watch the super bowl today without a recurrence, because I don't care who wins. I wish them both luck. Look for a big New England comeback next year.

The literature says that cycles and intensity tend to abate with age. That has been true in my case. When my headaches started 21 years ago, I was having 2 cycles per year, each of about 3 months. After 10 years, they diminished to once a year until '03 which was the last time until last November.

This last cycle has been easier, (of couse I'm retired so I don't have the stress that you guys have who have to work for a living). I think stress is a big factor in level of pain. Whether or not it plays a part in bringing on the cycle or individual attacks, or if it affects the level of pain is still an open question to me.

It seems that even after 20 years, I have a new theory with each headache. In all cases, I've been proven wrong. The info available today is so much greater than it was 20 years ago, yet, so many of our fellow clusterheads agree that our family Doctors act like they've never heard of these things. They should have a question on the test the Doctors have to take to get certified!!!!!!!!!!!!!!!!!!!!!

If you haven't been there yet, Go to Dr. Goadsby, a Britisher who is apparently the guru in this area. He wrote a very good article in the New England Journal of Medicine a few years ago, which you can download.

Good luck. Sorry, Giuseppe, 76 in 2 weeks!!!!!!!!!!!!!! But I'm PF right now, hope you are too.

Title: Re: thought they were over
Post by Jonny on Feb 5^th, 2006, 1:23pm

Im 43, I was chronic for 30years, Ive had nothing more than a few shadows for over a year. I even stopped ALL my meds....I have no idea why it went away, but not being chronic now means im always looking over my shoulder for the next hit.

Believe it or not.....it was easier being chronic

Title: Re: thought they were over
Post by Guiseppi on Feb 5^th, 2006, 1:50pm

Your lordship Mr. RDubois...(showing appropriate respect for my elders!)....you were the one who broke my heart! Glad to hear they get a little easier to bear as you get older. Wishing you a pain free super bowl, and I'll let my poor neighbor know he's not the only one praying for a New England comeback next year!

Guiseppi

Title: Re: thought they were over
Post by aussiegirl on Feb 5^th, 2006, 9:06pm

I had 6 years off but am in cycle now. Gave up smoking 71/2 years ago, got married 7years ago, had 1st baby 51/2 years ago, another 31/2 years ago, I thought all of these life changes might have broken the devil's back but no. They're back! :'(

My cycles have gone from one episode every year from 1985 - 1995, then I had a 4 year break to 1999 and then a 6 year break to 2005/6.

So maybe we will both be lucky and the gaps will keep increasing. If we have to have these headaches for the rest of our lives, I think I could manage with breaks of 6 years or more.

I hope you find treatment that works for you. I have found the O2 wonderful, and am taking indomethacin as preventative - working most of the time.

Looking forward to maybe 10years pf next time. :)

Hugs

Kathleen

Title: Re: thought they were over
Post by outofcommission on Feb 24^th, 2006, 6:04pm

i am currently on my 5th year. i just joined this sight because i am sure that i will get them again. it seems the older i get the more time i have between ch seasons. and it seems the older i get the more intence these chs get. i am hoping for another 5 years
hang in there buddy

Title: Re: thought they were over
Post by Dragnlance on Feb 24^th, 2006, 9:45pm

Like Jonny, I am chronic, 43 in March, been chronic all my life.
Jonny is correct, it is easier being chronic.

Title: Re: thought they were over
Post by shenke on Feb 25^th, 2006, 7:33am

I have no idea how anyone can say it is easier being chronic. I don't want either, but wondering when they will return does take it's toll on you.

But do know... that the first twenty + days of this cycle almost made me insane. I didn't know if I could go on much longer. I spend a lot of time reading on this site, and still wonder how everyone can have such a positive attitude.

I guess that (everyone here) is what helped keep me from going insane. Was PF for 5 years also, but this has been the worse time ever. Was so glad and thankful to find this place.

Hope I too can adjust to this dreadful life style, like so many of you guys. Still pray I never go from episodic to chronic though....

Sheila

Title: Re: thought they were over
Post by PL259 on Feb 25^th, 2006, 5:45pm

I never was chronic, but went about 18 years with 2 to 4 cycles per year, then in the late 90's found a good doctor, did my first 2 years free, thought they were gone, I was wrong. then made almost another 2 years before another cycle. Last one was 5 months long. Oh well, anytime my wife sees me putting pressure on the right side of my head she freaks and thinks they are back.

Still looking over my shoulder and running like hell ;;D

Title: Re: thought they were over
Post by Guiseppi on Feb 25^th, 2006, 5:53pm

I'm afraid I agree with Shenke. The only thing that gets me through a 12 weel cycle is knowing the damn things will stop. I'll get at least a 3-4 month time of nothingness, then ramp up to fun and games again. I guess you're only dealt what you can handle cuz I don't think I could handle chronic.

Guiseppi

Title: Re: thought they were over
Post by DennyM on Feb 26^th, 2006, 2:14am

When Brian was first diagnosed with CH, almost 20 years ago now, he was told (by a neuro, for pity's sake!)

(A) Only men get them
(B) They probably wouldn't bother him once he got
to the age of about 53

Grasping at (B) like the proverbial olive branch, Brian asked "Why? Do they just suddenly stop?"

"No", came the oh so encouraging reply, "most chaps have killed themselves by then!"

Since then, of course, we've learned so much about CH, and mostly from this site, for which I thank God daily.

Title: Re: thought they were over
Post by Jonny on Feb 26^th, 2006, 3:15am

on 02/25/06 at 17:53:45, Guiseppi wrote:

I don't think I could handle chronic.
Guiseppi

You would be surprised what you can handle when you have to, Joe ;)

Title: Re: thought they were over
Post by burnt-toast on Feb 26^th, 2006, 6:45am

My longest remisison has been 3 months in nearly 12 years. I got that remission after finally being properly diagnosed and starting treatment after two years of contineous attacks.

Since then I've had a few 1 month remissions between attack periods from 1 to over 3 years. I'm currently experiencing a remission that has lasted for just over 1 month. My cycle is long attack periods with short remissions thrown in every now and then just to keep me sane.

In your case you may be dealing with cycles with long remission periods. Have you been able to track the length of time that your attacks occur between remissions? From my limited understanding of this disease a reasonably predictable cycle of attacks and remissions will develop.

Hopefully your historical background with the disease is sufficient to understand your cycles. If not it may take some time to fully understand your condition. With luck you may be blessed with short attack periods and long remissions.

Best Wishes

Tom

Title: Re: thought they were over
Post by imnotbub on Feb 27^th, 2006, 2:40pm

I'm trying to understand the mindset of "It's easier to be cronic than episodic, because of the fear of getting the next headache"
[smiley=confused.gif]
I would much rather be between hits. not knowing when it's coming then having to deal with it every day. I just don't think about it.
It's like when I quit smoking. [smiley=smokin.gif]
I didn''t miss it (much) because I stopped thinking about it.

Title: Re: thought they were over
Post by Richr8 on Feb 27^th, 2006, 6:20pm

on 02/27/06 at 14:40:19, imnotbub wrote:

I'm trying to understand the mindset of "It's easier to be cronic than episodic, because of the fear of getting the next headache"
I would much rather be between hits. not knowing when it's coming then having to deal with it every day. I just don't think about it.

The thought of going chronic terrifies me, although maybe being episodic is easier for me since I know when it's coming. October. I'm pretty good at not worrying about the next cycle too much once I have recovered from a bout.

Though I do agree with Jonny and others in that it's amazing what you can deal with when you have no choice.

Title: Re: thought they were over
Post by pfunk on Feb 28^th, 2006, 12:52am

Being episodic has kind of screwed me up(as if I wasn't already). My most recent PF episode lasted almost two years. Until now, my cycles usually start in June and last from mid to late October. For some reason, this year they started Jan 8. Until now, I had never really even had one during the winter months. These guys around here have been a great help and I too will chime in agreement with Jonny. You really will be surprised at what you can handle, especially when you have to. PFDANs. Stay strong, we are here to fight with and for you.
;) 8)

Pfunk