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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Delurking
        
(Message started by: .wink. on Jun 27^th, 2004, 2:49am)

Title: Delurking
Post by .wink. on Jun 27^th, 2004, 2:49am

I've been lurking on these boards for about two years now. Finally decided to sign up for an account.

I've suffered from Clusters for about five years. Back then they were pretty mild--the headaches only hit every other day and the whole cluster would be over in about two weeks. I'd get two or three clusters a year and I'd treat them with Zomig.

About two years ago, my clusters started lasting a month and the headaches would hit every day. Then the interval between clusters started getting shorter.

Now each succesive cluster is worse, either in legnth, intensity, or frequency and the intervals between clusters keeps getting shorter too.

All that to say...Hi there everybody!

(Current treatments: O2, pred, Imitrex injectables, Depakote)

Title: Re: Delurking
Post by BobG on Jun 27^th, 2004, 3:32am

Hello .wink. Welcome to the board. Since you lurked for 2 years you probably already know what the place is all about. Hope to see more of you.

Title: Re: Delurking
Post by Superpain on Jun 27^th, 2004, 4:55am

The shy yet edumacated type. ;)

Sounds like the beast is starting to take a liking to you. :(

How long on the current prevents and how are they doing?

Title: Re: Delurking
Post by .wink. on Jun 27^th, 2004, 5:52am

Got an unwelcome wakeup call and am currently sucking down some O2. Sigh.

I've been using pred with each new episode for about a year now. Works pretty well for me--it reduces frequency and intensity. But I get mega-hungry and it makes my knees hurt.

I only started taking Depakote about three weeks ago. Too early to tell if it is really working. I thought that it was working as last week I was mostly PF, but that may have just been the natural course of the episode dying down. In the past four days I've gotten headaches (each day worse than the last), so I suspect that I'm heading into a new episode. (I'll be really pissed if that's the case b/c that means that I only got one weeks rest between episodes!) If that's the case, then maybe the Depakote isn't working so well for me. But it is probably too early to tell. (I'll talk to my doc about it soon.)

Title: Re: Delurking
Post by Little Deb on Jun 27^th, 2004, 10:34am

Welcome Wink......

Glad to have you in our company. Of course, wish it were under different circumstances.

Big Hugs...............Little Deb

Title: Re: Delurking
Post by Superpain on Jun 28^th, 2004, 3:13pm

:o
So how many pred tapers have you done this year?

Title: Re: Delurking
Post by Filbert on Jun 28^th, 2004, 3:32pm

Chris it seems Wink has returned to Lurkdom :-/

Filbert

Title: Re: Delurking
Post by Superpain on Jun 28^th, 2004, 4:05pm

Lurk on... Lurk off...

Didn't your momma tell you lurking off will make you go blind!?

Title: Re: Delurking
Post by wink on Jun 28^th, 2004, 6:05pm

I'm here, I'm here...just taking care of my 11 month old, so I can't be at the computer all the time. I love being a stay-at-home-dad, but it certainly cuts in on my surfing.

I've done three pred tapers this year. I think I'm going on my fourth episode, but I havn't gone on pred for it yet. I keep hoping that the Depakote will take care of it for me.

(I still need to talk to my Doc. Hopefully I'll get to it this afternoon.)

(Note: I got my username and name info straightened out so I don't need the periods in front of and behond my name anymore. Thank you Mr. Board Admin!)

Title: Re: Delurking
Post by Superpain on Jun 28^th, 2004, 8:14pm

Sounds to me like you're going chronic.
That's alot of prednisone... It can't be healthy.
Alot of chronics get relief with verapamil and lithium.

Title: Re: Delurking
Post by Filbert on Jun 28^th, 2004, 8:47pm

Wink- sorry I thought you'd left us and good luck with your childcare. Have three youngsters myself so now how much of a juggliing act it can be, Agree with Superpain that's a lot of steroids in a one year period!

All the best Filbert.

Title: Re: Delurking
Post by don on Jun 28^th, 2004, 9:25pm

I'm probably the biggest advocate of the prednisone around here simply because it works pretty well for me but three times in one year would indicate to me that I should seek another route.

It does sound like your heading down Chronic Blvd and the verap. and lithium combo seems to be a God send for the chronics.

Title: Re: Delurking
Post by wink on Jun 29^th, 2004, 1:37am

Clarification: that would be three pred tapers in the past 12 months. Only two so far in the 2004 calendar year.

Yeah, it seems like a lot of pred to me to, but it largely works while I'm on it. It just doesn't last forever.

My big worry is that I'm on the road to becoming chronic. Looks like some of you have picked up on that too.

My doc wants to try a couple of other things first before verap and lithium. I'm more than happy to give whatever he suggests a try. He's been very good so far even if we haven't yet hit on the correct treatment for me.

Title: Re: Delurking
Post by Woobie on Jul 4^th, 2004, 7:36pm

Hey Wink...

Nice to meet you....

Just wanted to say hi.

Tina :-*

Title: Re: Delurking
Post by Superpain on Jul 8^th, 2004, 6:18am

Well... At least you quit lurking off. ;;D

Title: Re: Delurking
Post by 911please on Jul 9^th, 2004, 4:20pm

I seem to find lurking off at the end of an encouter with the beast helps me to sleep. btw the wife likes it too..

Doug..

the clusters make me blind in one eye so I have no worries.. [smiley=laugh.gif]

Title: Re: Delurking
Post by alleyoop on Jul 12^th, 2004, 8:41pm

Hey Wink,

From one ex-lurker to another, "Welcome!"
I've got to agree with you and the rest in that it does sound like you're going chronic. I'm a diagnosed chronic, myself. But it looks like I just may fall out of that classification. If I make it through today without getting hit, it'll make 23 days PF! I have been on lithium and verapamil for several years now. But if I had to say it was one thing that contributed to my recent success, it's the fact that after going over and over these boards, I adjusted my dosages. That's about all I can say. So far, it's worked for me!

Three pred tapers in 12 mos does seem to be pushing it. Other than that, sounds like you've got a good neuro.

Good luck and hope we're wrong about you going chronic.

......................................alley

8)

Title: Re: Delurking
Post by Prense on Jul 12^th, 2004, 8:53pm

on 07/12/04 at 20:41:07, alleyoop wrote:

I'm a diagnosed chronic, myself. But it looks like I just may fall out of that classification. If I make it through today without getting hit, it'll make 23 days PF! I have been on lithium and verapamil for several years now.

You gotta be unmedicated to meet that definition I do believe. I hope like hell you are getting booted from chronic's anonymous though!

Chris