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        New Message Board Archives >> 2002 Posts >> A Newbie Speaks
        
(Message started by: joepauley on Sep 30^th, 2002, 3:22pm)

Title: A Newbie Speaks
Post by joepauley on Sep 30^th, 2002, 3:22pm

Hello fellow clusterheads,

I've been reading this site for about 2 years now (mostly when I'm in a cluster), and I think it's wonderful to have this site on the net.

I'm 37 years old and I live in beautiful Pittsburgh, PA. I've been an episodic cluster sufferer for about 18 years now. I've tried several meds (currently on Verapamil and Prednisone), but the beast is still breaking through. Yesterday I had a 4 1/2 hour dance in the afternoon (thanks mostly to sleeping too late), that ranged between a Kip 7 - 10. Once he finally left for a while, I did two performances of the play I'm working on (yeah, I'm an actor... but not paid for it!), then came home only to be hit with a 10 again. My partner took me to the ER, cause I wasn't about to deal with another long one with Monday coming up. I was amazed at how little the ER docs knew about clusters. They kept saying migraine whenever I said cluster. They would only give me O2 via a nasal cannula (big help there), then when they brought the needle, I thought it would be Imitrex. But no, it was Demerol. I've never had any type of painkiller like that before, but let me tell you, I slept like a BABY last night!

I don't want to take that stuff again for these, and I'm hoping for a neuro appointment soon. Just waiting for my PCP to get back to me about a referral and info on getting O2 at home.

Well, no real theme to my post here, I just wanted to say thanks for being here and I'll be checking in here and there.

PFDAN to all!

Joe

Title: Re: A Newbie Speaks
Post by NancyMcFree on Sep 30^th, 2002, 3:34pm

Wow ... you should have called yourself "The Lurker" as you have been here lurking forever. Hopefully you have found what you need from this site, if not ... just ask. There are lots of people with lots of experience. I'm just a newbie and know nothing but what works for me ... O2 and Imitrex ... but I found that out on this board .... so thanks to the people here, I can get through my first cycle.

Here's wishing you a warm welcome and PFDAN's !!!!

Title: Re: A Newbie Speaks
Post by Slammy on Sep 30^th, 2002, 3:44pm

on 09/30/02 at 15:34:16, NancyMcFree wrote:

I'm just a newbie and know nothing.....

Well Nancy,

Thatababy! Acceptance is always the 1st step before getting better! ;D

Slammy 8)

Title: Re: A Newbie Speaks
Post by pjbgravely on Sep 30^th, 2002, 3:47pm

Sorry you have to be here but glad your in the right place. My story was the exact opposite, The er doc said I probably had clusters and he was right. Also a walk in center nurse practitioner said I had clusters many years ago but I went with my doc who said it was sinuis pain.

Title: Re: A Newbie Speaks
Post by 2late on Sep 30^th, 2002, 5:33pm

welcome to the board, why the hell did you wait so long, i also live in the 'burgh & i'm 37, check your IM dude! ..........2late

Title: Re: A Newbie Speaks
Post by domm on Sep 30^th, 2002, 6:54pm

Joe - welcome to the board. Hope you find the right set of meds that work for you. If you've been hanging around for two years, you certainly don't need any advise from me.

BTW - I lived in the burg from 79 to 85, fell in love with the "stillers". What the hell happened to them? watched them Sunday and they had to drag out an old man to win the game..... Cowher knows how to make faces though, he's got that "pissed off and disgusted" look down pat.......That must be why they pay him $5mil.....LOL

good luck
domm

Title: Re: A Newbie Speaks
Post by 2late on Sep 30^th, 2002, 9:07pm

dom that game was ugly!!! we call him the "jaw" around here...they'll be fine it's early! ...........2late

Title: Re: A Newbie Speaks
Post by Jim R on Sep 30^th, 2002, 9:16pm

Joe,

I've been to ER's on multiple occasions and you're correct - most ER docs and nurses know VERY little, if anything about clusters and even if they don't say "migraine", they're thinking it because of the treatments they offer, e.g. darken room lights, asking you to lie down (yeah, right! LOL), etc. I have never once been offered imitrex and anything of the kind - it is usually demerol and phenergan or droperidol, sometimes morphine, etc. Not that I'm knocking that because when I'm in a KIP 10 - well, like Slammy says, I snort Yak dung if it would help! LOL. But there is a tremendous dearth of knowledge by practitioners.

Getting O2 is definitely a good move. Although it doesn't always work for me, especially when the CH's get ot be KIP 6 or above, it helps almost everyone here to some degree.

Good luck Joe and PFDAN's to you.

Jim R

Title: Re: A Newbie Speaks
Post by joepauley on Oct 1^st, 2002, 1:17pm

Wow, what a welcome! Thanks for being here everyone. I've been perusing the message boards more and more over the last few days, and you have quite the growing family here. It does my soul a lot of good to see the empathy and concern on display here. It's something you/we can all be proud of.

I have to admit though, I'm not a big football fan... for some reason I always think about Christians being thrown to the Lions or something (though if it was the Detroit Lions, the Christians would have a better chance! ;) )

Thanks again all, and I hope to participate around here ever more.

Title: Re: A Newbie Speaks
Post by Drk^Angel on Oct 4^th, 2002, 4:01pm

Welcome to the board! Sorry that the beast is running sprints on your cranium while wearin' steel cleats. When you get your referral for a neuro, make sure your GP makes the appointment for Dr Kaniecki. He the director of the UPMC Headache Center, and he really knows what he's doin'. Good luck!

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

Title: Re: A Newbie Speaks
Post by Edna on Oct 5^th, 2002, 1:13pm

WOW lurked for 2 years...........whew..........I couldn't of kept quiet for THAT long.

Welcome to our home then, and hope you stick around with us........somehow........we nuts here help.

Wishing you a quick end to this cycle

EDNA

Title: Re: A Newbie Speaks
Post by curtisdsc on Oct 5^th, 2002, 2:49pm

no joke edna. two years, it only took me two weeks to open my mouth and insert foot. ::)

welcome aboard joe. lots of good info here. i'm sure you know that by now. :)

PFDAN going on 7 days

Curtis

Title: Re: A Newbie Speaks
Post by Charlie on Oct 5^th, 2002, 8:44pm

Welcome Joe. No need to go through my speil then since you're familiar with this place. How could you stand us without telling us to shut up? ::)

By the way, yer right about the Detroit Lions :D

Charlie