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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Glad to know your out there! I'm New
        
(Message started by: EmpressJMB on Sep 16^th, 2004, 7:46pm)

Title: Glad to know your out there! I'm New
Post by EmpressJMB on Sep 16^th, 2004, 7:46pm

I just found this site a couple days ago and am very thankful! I spent the past couple days scoping everything out. I'm not sure if the way I'm posting is correct but will soon find out. The first time I found you guys, I read the personal experiences and was sobbing. I didn't know there were so many of us going through this kind of pain. I really thought I was alone or no one understood my pain. I have suffered for 27 years. The first 15 of those years I was misdiagnosed. Sinus trouble, stress, nerves, etc... Apparently this is very common. 12 years ago during a particularly long episode, I finally met a neuro who dx me with CH. He said I was a classic case but they're more rare in woman. He prescribed Sansert. Since then, I had two kids and in ten years have had 2 short episodes. Which I just dealt with. Until 3 weeks ago. Back to my familiar routine of headbanging, screaming into my pillow, ice packs, pacing, waking up every hour and a half to start all over again. The worst...terrified to go to sleep. I saw a new neuro and he directed me online and I eventually wound up here. In 10 years a lot of progress has been made in treatment. He immediatly started me with a 2 hour infusion of steroids. Then a digressing course of methylprednisolone for a week and Verapamil and Imitrex. I have been headache free for 6 days now! That is soooooo exciting to me (and apparently only me.) Except knowing you guys understand what that means to me. Thanks! [smiley=laugh.gif]

Title: Re: Glad to know your out there! I'm New
Post by Kris_in_SJ on Sep 16^th, 2004, 8:27pm

Hi!

Welcome. So glad to hear you're enjoying some PF time. Sounds like you're also lucky to have found a neuro who's "in the know."

No one should have to "suffer through" a cluster cycle. Keep visiting and posting. There's a wealth of support and knowledge on this site and many find a home here.

Hugs,

Kris

Title: Re: Glad to know your out there! I'm New
Post by lionsound on Sep 16^th, 2004, 10:22pm

That IS exciting! so glad you've had successful relief.

That was an excelent first post! Be sure to read more....and ask any questions that you might have.

Welcome EmpressJMB!

-Lionsound

Title: Re: Glad to know your out there! I'm New
Post by TxBasslady on Sep 17^th, 2004, 12:46am

Welcome to the board!

PF is fantastic.....gives ya somethin' to shout about! ;;D

Sounds like you found a doc with knowledge about CH.
That in itself, is great.

Good luck to you.....keep posting and let us know how you're doing ;)

PF vibes,

Jean

Title: Re: Glad to know your out there! I'm New
Post by Ruth on Sep 17^th, 2004, 6:02pm

Hi
I am sort of new to the site also, but not new to the problem.
I too found that in the past 10 years there has been great progress made towards helping us.
I was once told by a Nureo several years ago that it sounded to him like I had Cluster Headaches, except for the fact that I am a women. I guess they have figured it out, Women can do it too.
I started at 18 with mine, had two children and have survived many episodes with out meds, but to be honest with you, if I had not believed in my heart that the trial by fire would end one day, I would have blown my brains out for sure.
I thank God everyday that I have found this site and have read so many encouraging words from fellow suffers.
Thank you for joining us, but sorry you have this problem

Title: Re: Glad to know your out there! I'm New
Post by yikes_another_one on Sep 17^th, 2004, 7:08pm

I was just wondering who your neuro is....

My family lives just East of you....
and when I was down in Rochester, and the doctors
there didn't want anythign off the internet....ugh. >:(

Now I'm out in Indiana, and not certain
what to request from a GP....

is there any way to find who's got the know? [smiley=huh.gif]

Not like a 1-800 Dentist...but a registry or anything?

just curious,
TJ

Title: Re: Glad to know your out there! I'm New
Post by clarence on Sep 19^th, 2004, 4:53pm

Quote:

is there any way to find who's got the know?

Not like a 1-800 Dentist...but a registry or anything?

There is a list of doctors who are knowledgable about CH at http://www.clusterheadaches.org/doctors.htm

Also, I can't remember who, but somebody on the General Posts board said he was in the process of putting together a CH "Yellow Pages." Look out for it...

Hope that helps.
Casey

Title: it does help!
Post by yikes_another_one on Sep 19^th, 2004, 5:22pm

Thank you Casey

I hate going to the doctors, because lately
they have been a waste of time and finances....
:-[

but if someone can help....
whew, it would be a delight.

;;D

Title: Re: it does help!
Post by clarence on Sep 19^th, 2004, 5:37pm

on 09/19/04 at 17:22:25, yikes_another_one wrote:

Thank you Casey

I hate going to the doctors, because lately
they have been a waste of time and finances....
:-[

but if someone can help....
whew, it would be a delight.

;;D

I really hope you find someone good in your area.

Casey

Title: Re: Glad to know your out there! I'm New
Post by lana_banana on Sep 19^th, 2004, 7:57pm

TJ,

Where do you live in Indiana? I just moved to Wisconsin but I had a pretty good neuro in Northwest Indiana. Ley me know if that's anywhere close to ya.

Lana

Title: Re: Glad to know your out there! I'm New
Post by thebbz on Sep 22^nd, 2004, 7:48pm

Sorry for the CH, but this site does help huh. Finally on my fourth neuro I hit the good one. We really do need a list of neuros, and bad!!! Stay on the fight and dont forget to breathe
BB [smiley=wave.gif]

Title: Re: Glad to know your out there! I'm New
Post by Mr. Happy on Sep 23^rd, 2004, 7:49am

Andrew Santos (SaintsLair) (saintslair@gmail.com) would be the lad working on the Doc Yellow Pages. It's a "job in progress" item......might be a while before it's ready for viewing. Go to tickle him on it.....he'd enjoy hearing of your interest.

Amazing that the Pred/Verapamil/Trex would still get a standing ovation. Been available for years. That should be a first-line approach for anyone that doesn't have a prior meds schedule set up. Glad it's working for you, Empress......(just make sure and stash that formula under your throne for the next inevitable bout.)

Planning is everything,
RJ