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Topic: Glad to know your out there! I'm New (Read 334 times) |
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EmpressJMB
New Board Veteran
No Brain, No Headache
Posts: 114
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Glad to know your out there! I'm New
« on: Sep 16th, 2004, 7:46pm » |
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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! 
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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Kris_in_SJ
New Board Hall of Famer
There's no place like home.
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Posts: 1539
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Re: Glad to know your out there! I'm New
« Reply #1 on: Sep 16th, 2004, 8:27pm » |
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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
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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lionsound
CH.com Alumnus
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breathe
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Re: Glad to know your out there! I'm New
« Reply #2 on: Sep 16th, 2004, 10:22pm » |
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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
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Glad to know your out there! I'm New
« Reply #3 on: Sep 17th, 2004, 12:46am » |
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Welcome to the board!
PF is fantastic.....gives ya somethin' to shout about! 
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
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Ruth
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Posts: 129
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Re: Glad to know your out there! I'm New
« Reply #4 on: Sep 17th, 2004, 6:02pm » |
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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
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yikes-another-one
New Board Old Timer
  
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Posts: 384
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Re: Glad to know your out there! I'm New
« Reply #5 on: Sep 17th, 2004, 7:08pm » |
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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? 
Not like a 1-800 Dentist...but a registry or anything?
just curious,
TJ
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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clarence
CH.com Alumnus
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Wake up
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Re: Glad to know your out there! I'm New
« Reply #6 on: Sep 19th, 2004, 4:53pm » |
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Quote:is there any way to find who's got the know?
Not like a 1-800 Dentist...but a registry or anything? |
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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
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NY Yankees Suck!!!
"Bart, don't make fun of Grad students. They just made a terrible life decision," Marge Simpson
Where I live: http://rainfallsoneveryone.com
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yikes-another-one
New Board Old Timer
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Posts: 384
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it does help!
« Reply #7 on: Sep 19th, 2004, 5:22pm » |
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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.
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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clarence
CH.com Alumnus
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Wake up
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Re: it does help!
« Reply #8 on: Sep 19th, 2004, 5:37pm » |
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on Sep 19th, 2004, 5:22pm, 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.
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I really hope you find someone good in your area.
Casey
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NY Yankees Suck!!!
"Bart, don't make fun of Grad students. They just made a terrible life decision," Marge Simpson
Where I live: http://rainfallsoneveryone.com
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lana_banana
New Board Newbie
Da Bears!
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Posts: 7
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Re: Glad to know your out there! I'm New
« Reply #9 on: Sep 19th, 2004, 7:57pm » |
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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
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thebbz
CH.com Alumnus
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Ow,Ow,Ow
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Re: Glad to know your out there! I'm New
« Reply #10 on: Sep 22nd, 2004, 7:48pm » |
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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 
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It wasn't me I didn't do it
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Mr. Happy
CH.com Alumnus
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If I can do it, it ain't art.
  
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Posts: 2217
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Re: Glad to know your out there! I'm New
« Reply #11 on: Sep 23rd, 2004, 7:49am » |
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Andrew Santos (SaintsLair) 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
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May those who don't want any
Have memories of never getting any.
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