Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> Permanent remission?
        
(Message started by: Mark_Florance on Aug 12^th, 2002, 3:01pm)

Title: Permanent remission?
Post by Mark_Florance on Aug 12^th, 2002, 3:01pm

Are there any "former sufferers" out there whose life has been cluster-free for a number of years? I'm 44 and barely survived my last episode in April of '94. Prior to that I lived with them for 20 years, long before any doctor knew how to help. I dare not think that they will never return, but I am hopeful they will remain in the past. I still have out-dated imitrix syringes in my medicine chest - useless of course, but fear is a powerful thing. How can one's brain chemistry or physical make-up change in order for them to have gone away for so long? It's a real mystery to me but one I am thankful for - every pain-free day.

Title: Re: Permanent remission?
Post by ChristineL on Aug 12^th, 2002, 3:14pm

Mark,

I was in remission for 14 years. Forgot about the damn things when all of a sudden out of the blue for no reason BAM - they came back. They have been back now for almost a month - Here we go again!!!!!

Chris L

Title: Re: Permanent remission?
Post by jonny on Aug 12^th, 2002, 3:14pm

Yup, Charlie will stop by soon he's been PF for 11 years.

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

Title: Re: Permanent remission?
Post by 2late on Aug 12^th, 2002, 3:16pm

Congrats!!!!! it's great to hear from "former sufferers" your livin' our dream!! it's good to know some people put ch behind them.Someday maybe all of us can be "former" best of luck to ya!!! ...................2late

Title: Re: Permanent remission?
Post by Svenn on Aug 12^th, 2002, 5:15pm

I dont think the title here is right.
If all that i have read on cluster that word does not exist.
Sooner or later "General Cluster and his beast"will be back.
But i hope that you get as long remmisions as posible.
So sorry if i have disapointing you but thats it.

Your friend in Norway

Svenn

Title: Re: Permanent remission?
Post by don on Aug 12^th, 2002, 6:01pm

That would be the lack of attacks between the last one and being dead. No one has reported back.

Title: Re: Permanent remission?
Post by 4Pack on Aug 12^th, 2002, 6:20pm

I was in remmision for 8 years..until 2 months ago...then SOB's showed up again! They are still hanging around...but should be about history again if I go by my past bouts!

Title: Re: Permanent remission?
Post by maria on Aug 12^th, 2002, 8:00pm

Mark,
I battled the beast for 22 years episodic, had 5 years pain free which I attributed to taking Prozac during the Beast's preferred visiting times and possibly also taking up golf thus getting more natural sunlight and Vitamin D. The last 3 years I have taken atenalol for blood pressure (no prozac) and the beast last visited me 2 years ago after a major surgery. After getting a general anesthesia, I went into a full blown CH cycle the evening after the surgery, no little warning shadows or anything, moved right into a KIP 7-8 and I was on a morphine drip. Since then no CH, although I am not overly hopeful about this as I have heard this is often a life long affliction and my neuro told me years ago for women it often gets worse during menopause. YIKES. Hopefully we are the exception rather than the rule. Maria

Title: Re: Permanent remission?
Post by ChristineL on Aug 12^th, 2002, 8:26pm

Hmmmmmm - I started taking Altace for my BP about 6 months ago - wonder if there is any correlation but...........isn't Verapamil a bp med and they prescribe that for Ch's so I guess I just answered my own question.

Chris L

Title: Re: Permanent remission?
Post by Drk^Angel on Aug 12^th, 2002, 8:32pm

Welcome to the board! Glad to hear the beast has lost your address. Hopefully he'll never find it again. Good luck!

PFDAN................... Drk^Angel

Title: Re: Permanent remission?
Post by Charlie on Aug 12^th, 2002, 11:14pm

Well... I'm happy to say that as of 1991, I've been pain free. I'm not sure why. I'll be 56 very shortly and that may have an effect but there is no proof of that.

My CH began in 1969 when I was 23 and began to dissipate during the most trying time of my life. I'm also an epileptic but I've had seizures for 42 years. I don't know if there is a connection

I wish I had something profound to say but this is about it. I will say that there is nothing etched in stone that says they will never end. So far, I'm amazed and I don't want to rock this boat.

Take care and stick around.

Charlie

Title: Re: Permanent remission?
Post by Ree on Aug 13^th, 2002, 12:10am

I come here everyday because my husband Dave thinks he is in permanent remission. He won't even talk about them. It has been about 2 years. He usually goes 1 1/2 to 2 years in between cycles... I hope he is right... Congratulations to you... I know this does happen for some. Ree

Title: Re: Permanent remission?
Post by Slammy on Aug 13^th, 2002, 10:19am

Charlie,

I think it is amazing that after being PF for 11 years, you are an icon on here! I salute you sir, for being there for everyone when the beast pays his visits....I only hope that I develop a tenth of your selflessness! Rock on Charlie!

Slammy 8)

Title: Re: Permanent remission?
Post by Marcos618 on Aug 13^th, 2002, 12:26pm

My Ch's have become less frequent. I am in one now and the one before this was in 1998. This session and the one in 1998 were BOTH brought on by me being on vacation and spending too much time in the heat and sun. Fewer meds then I use to take years ago are able to control these to some point. Going from a session starting every 18 to 24 months and lasting 6 to 18 months, what I have had in these last two sessions is a great improvement.

Title: Re: Permanent remission?
Post by Donna on Aug 13^th, 2002, 4:42pm

Well kids, I have been cluster free since 1986.......that's 16 years. I've always said that it's over and believe it in spite of this tread. (Oh such strong wishful thinking!)

I am surprised to hear of a 14 year "remission" that is now over.

I had ch for 28 years when they just stopped for no reason with substance.

Title: Re: Permanent remission?
Post by maria on Aug 13^th, 2002, 6:04pm

Hey, I've always felt like there is no rhyme or reason to this "horror" as Charlie likes to call it. One year a medicine seems to work the next the beast works its way around it. It is such a trial and error thing with the meds and usually hit and miss. I remain baffled by this as always but on hand to support others if I can. BTW if the beast comes acalling again I will become a shroom farmer. Maria ;D