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New Message Board Archives >> Jul-Sep 2003 >> Have my Clusters stopped for good?
(Message started by: joe_d1966 on Aug 7th, 2003, 5:08pm)

Title: Have my Clusters stopped for good?
Post by joe_d1966 on Aug 7th, 2003, 5:08pm
I am a 37 year old male and have had episodic clusters since I was approximately 11 years old.  My typical cycle was a 10 week episode of clusters once per day, same time each morning. I would typically go into remission for 18 to 24 months before the next cycle.  This cycle was pretty consistent for nearly 25 years.

I am thrilled to report that my last cycle ended in August, 1999.  I am two years past my normal cluster cycle and don't want to look a gift horse in the mouth, but I really want to know if I am beyond this prison hell that we all have lived with.  I read somewhere that these clusters sometimes disappear in middle age, but can't find the info again. If someone can direct me to it, I would appreciate it.

Any comments and other info would also be appreciated.

Joe

Title: Re: Have my Clusters stopped for good?
Post by ave on Aug 7th, 2003, 5:44pm
Here's the good news, Joe, there iused to be a theory that clusters would disappear when the arteries had hardened enough.

Here's the bad news, Joe - sometimes they do and sometimes they don't.

Some of us have been pain free for 6, 10, or more years. Somehave been pain free for 5 and come back screaming at the return of the demon. Some of us are still being hit after 60, 65 y.o.a.


The cluster is a wiley beast and if we could predict what it is going to do to us, we'd all be making our fortunes on Wall Street...

Sorry but there it is.


Title: Re: Have my Clusters stopped for good?
Post by Carl_D on Aug 7th, 2003, 5:53pm
Joe...
Pardon my french, but holy fuck!!!!!
11 years old? Sheesh, I thought I had it rough starting at 17.

You deserve the break, whether it be a few days more, a few years more, or as some Docs say...you may have outgrown them. I have heard it said that if someone begins getting clusters at an early age, they can go into permanent remission later in life.
Here's hoping they stay gone guy.

Peace,
Carl D - the oddest of the odd

Title: Re: Have my Clusters stopped for good?
Post by ShariRae on Aug 7th, 2003, 6:12pm
joe..
  mine also started when I was 11..came & went for years...then stayed away for 6 years,,,yayyy...
but they returned again :(   I have been pain free now for a lil over a year (thanx mostly to the people on this board & their guidance) But am hoping that as I get older..the beast will go into retirement...am now 41 & hoping for the best....FOR ALL OF US!
Huggs
Shari

Title: Re: Have my Clusters stopped for good?
Post by jonny on Aug 7th, 2003, 7:04pm
Started at 12 am 40 now and all those chronic years have taught me one thing.

Once you think your done, it sucks you back in so dont go on vacation without your meds ;D

.........................................jonny

Title: Re: Have my Clusters stopped for good?
Post by Mark C on Aug 7th, 2003, 7:25pm
SHHHHHHHHHHH!!


Don't jinx it!  ;D  I agree with what has been posted, which is the is no set pattern, dammit!

Mine started at around age 13, increased in severity for the next 20 years, backed off for a while, and have been back with a vengence my last two attacks. The most time between cycles I have ever had is 18 months. I got hit twice in 3 years...quite a while ago. The worst has been cycles that last 3 or 4 or even 5 months, barely enough time between cycle to call them cycles.

Good Luck Joe, I hope you pull a Charlie!

PFDAN's
Mark  

Title: You bet...yup
Post by rumplestiltskin on Aug 7th, 2003, 8:40pm
Their gone for good.

den

Title: Re: Have my Clusters stopped for good?
Post by Mr.Happy on Aug 7th, 2003, 8:51pm

on 08/07/03 at 19:25:58, Mark C wrote:
I hope you pull a Charlie!
Damn! There goes the age old PFDAN crap. Good new motto, Mark.

Quote:
I really want to know if I am beyond this prison hell that we all have lived with.
Absolutely. Don't give it a second thought. Wish you the absolute best, fine-assed mammories of what this USED to be like for you.  Think positive, and pull a Chaz.

Er......don't toss all yer Triptans just yet,
RJ

Title: Re: Have my Clusters stopped for good?
Post by joe_d1966 on Aug 7th, 2003, 9:16pm
Thanks everyone!

It's been 4 years since my last headache (why they call them headaches, I don't know. It's kind of like calling the Niagra Falls a trickling stream)  Anyway, and luckily, not having a headache for so long kind of makes you forget the reality. It's like when you find a med that finally works, you get all happy, then the damn things break through again just to show you they are still in charge.  I'm never far from my meds and I probably never will be. If nothing else, I am grateful that I skipped one cycle. I wish that everyone could experience the same thing....at least once.

Please explain a "Chaz".  I have been away for a few years and lost touch with the lingo.

Joe

Title: Re: Have my Clusters stopped for good?
Post by Donna on Aug 7th, 2003, 9:47pm
Charlie is one of the lucky few here in Clusterville who has been cluster free for a good number of years......I don't know quite how many.

I, too, am a lucky one.......been cluster headache free since 1986, or 17 years in October.  I am a wee bit older than the average Clusterville population, so the artery theory may apply here.

Chaz is a well known nickname for Charlie.

Good luck to you.........I hope it lasts.

Title: Re: Have my Clusters stopped for good?
Post by fubar on Aug 7th, 2003, 10:49pm

on 08/07/03 at 19:04:39, jonny wrote:
Once you think your done, it sucks you back in so dont go on vacation without your meds ;D

.........................................jonny



Damn, Jonny.  No truer words...  but I'd add the words 'or business trip' to that line.  I was doing great for the last few weeks on the Lith + Verap, but this week while travelling I got smacked and had nothing to help.  No O2, no Imitrex (how stupid was that?).  I actually felt panic when I realized I had no choice but to tough it out.  It wasn't a 10, but I'd give it a solid 6.

Anyway, good advice.  Keep those meds handy and *current* (exp. dates).

-Fu

Title: Re: Have my Clusters stopped for good?
Post by brain_cramps on Aug 8th, 2003, 12:04am

on 08/07/03 at 17:44:01, ave wrote:
Here's the good news, Joe, there iused to be a theory that clusters would disappear when the arteries had hardened enough.


So, I guess my hi-cholesterol diet of a steak and 12 eggs for breakfast may have some merit.     ;D

grant       8)

and greasy hash-browns      mmmmm, mmmmm


Title: Re: Have my Clusters stopped for good?
Post by miCHel on Aug 8th, 2003, 9:50am
I once had a 4-year break.  Man, I even forgot I suffered from this thing!

Then it came back.  I had a girlfriend who also tried to come back after a four-year break.  I think I prefered the CH  ;)

There is really only one thing to do : Enjoy it!

And as Mark C said "Don't jinx it".  I thought I was the least superstitious guy in the world but with CH, I dunno.  It's scary...  I am typing this with only one hand while I am knocking on wood with the other one...

miCHel

Title: Re: Have my Clusters stopped for good?
Post by Ree on Aug 9th, 2003, 10:43am
IM ROOTING FOR YOU JOE THAT THEY ARE GONE GONE GONE FOR GOOD......... AND WERE HOPING THAT HAPPENS IN OUR HOUSE TOO.............. HOW MANY YEARS DID CHAZ HAVE THEM BEFORE THEY STOPPED???????????????  REE

Title: Re: Have my Clusters stopped for good?
Post by CathiP on Aug 9th, 2003, 11:22am
Gee, Joe-
The way I figure it, if you're clusters have stopped.....well, THAT's GOOD! So, IMHO, you're clusters have gone for good.......today is good, yesterday was good.....and anticipate tomorrow as being good as well.
I Do hope you never get hit again- that you have sent the beast packing once and for all......I like it! Call it "pulling a Charlie".....and if it lasts for the rest of your life, I congratulate you!!!
Stick around, and let every know how it goes, would you please?
Happy for you, Cathi

Title: Re: Have my Clusters stopped for good?
Post by joe_d1966 on Aug 9th, 2003, 10:39pm
Thanks Cathi!  Whether I have pulled a Charlie or not, I will definitely stick around.

Joe



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