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Topic: another closet sufferer (Read 334 times) |
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brent
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another closet sufferer
« on: Nov 5th, 2002, 12:01am » |
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WOW, this is like coming out of a cave. Finding out there is such a support group that understands what this is like sort of lifts some weight from my shoulders. For about 18 years I've had this secret life. You know, the nights spent awake in fear, the silly rituals trying to find relief. This feels strange just talking about it, knowing that you understand(holding back a tear).
I'll post again. I hope to get to know some of you, and hopefully provide some support to others. Time to sleep, lets hope for a good night.
Brent
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Mastifflvr28
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Re: another closet sufferer
« Reply #1 on: Nov 5th, 2002, 12:13am » |
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Welcome aboard Brent,
Wish you didn't have to be here, but glad you found us. Too many newbies 
Read all you can on this site and OUCH's site, you will get a great education.
hoping you have a decent nite,
Mast
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Mastifflvr28 (aka Michelle A.)
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OneEyeBlind
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Re: another closet sufferer
« Reply #2 on: Nov 5th, 2002, 4:36am » |
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Welcome to the board. Lots of good people and lots of great info .... read the posts, visit the ouch site, get those buttons on the left hopping ..... you'll be amazed at the amount of info here.
Welcome, welcome, welcome.
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One cannot step twice in the same river, for fresh waters are forever flowing around us.
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Charlie
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Re: another closet sufferer
« Reply #3 on: Nov 5th, 2002, 5:00am » |
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Welcome to our ward. Believe me, I felt the same way when I found this place. I had no idea.....and although it's been many years since an attack, I felt at home. I'd never talked to another with this horror. I just have to be around them. Beats me..... ???
Anyway, we're happy you found this place and keep in touch.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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brent
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I love YaBB 1G - SP1!
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Re: another closet sufferer
« Reply #4 on: Nov 5th, 2002, 7:44am » |
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Thanks for the welcome.
Brent
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NotH20
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Re: another closet sufferer
« Reply #5 on: Nov 5th, 2002, 8:38am » |
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Hey Brent - sorry that you are here 
I too felt the same way - not knowing anyone who had ch's, I was amazed when I found this site.
When you get the time, tell us more about yourself. What works and doesn't work for you, etc.
Hope you had a good pain free night...
NotH20
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StanTheMan
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Re: another closet sufferer
« Reply #6 on: Nov 5th, 2002, 10:27am » |
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Welcome Brent!
Dittos to what everyone else said.
Stick around, friend!
Prayers for PFDAN!
StanTheMan
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"All the days of the afflicted are bad, but the cheerful heart has a continual feast." - - - - - Proverbs 15:15
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Azrael
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Re: another closet sufferer
« Reply #7 on: Nov 5th, 2002, 12:13pm » |
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Welcome to the board! Sorry that the beast does jumping jacks on your cranium while wearing spiked heels. Good luck!
PFDAN........................................... Drk^Angel
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Margi
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Re: another closet sufferer
« Reply #8 on: Nov 5th, 2002, 1:06pm » |
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Hi Brent
Welcome - sorry you're in pain.
And...you'll soon learn that NONE of us keep quiet about clusters anymore. We get quite loud about it sometimes, and work continually to promote awareness of this condition. It's the only way we're ever going to find a cure, right?
Hopefully, Drk^Angel's greeting didn't make you cringe too much, Brent. We really ARE a support group here.
Please tell us what you're doing for treatment? Meds? Coping techniques? Are you under the care of a cluster knowledgeable neuro? Lots of good info int he buttons to the left, as well as over at the OUCH website. Oh and join OUCH - it's free and a bigger membership can only help to promote cluster awareness.
Again, welcome. 
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brent
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Re: another closet sufferer
« Reply #9 on: Nov 5th, 2002, 7:35pm » |
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Well, I got in about 1 hour of sleep before it hit last night. Then a couple of hours of crappy off and on sleep before work, can't let the old head get too low or it brings it back.
About me? well, I'm 39, male. been getting clusters for about 18 years. They started while I was in the Army. It took a few years before they were diagnosed as C/H (by a civillian Dr.). The early attempt at treatment was some sort of Beta blocker. It did nothing except prevent erections  . My experience with that Dr. left me feeling pretty hopeless. I didn't see a doctor about it for about 10 years. Even then I didn't get much help, although I must admit I wasn't very persistent, still feeling like I would just have to live with it. Tried Cafergot and really couldn't tell if it helped for sure. It seemed to make me a little sick. Last episode I made my first trip to the emergency room. I just couldn't take it any longer. Got a shot of something that knocked my ass out! Had another trip to the E-room last week. I was next in line and a lady brought in a small child with Athsma, I let them go ahead of me and my headache subsided enough that I could handle it. Karma I suppose. Anyway, I left without being seen.
Some of the things that I have found to help are, ice on my forehead, breathing cold air, certain pressure points around my eye and the back of my head. Although I have been known to leave bruises by over doing it. Meditating helps at times, but sometimes makes them worse. Daytime clusters seem to be postponed if I can really get focused on a task, or by physical activity at the first sign. May sound silly, but sex can provide relief also. Not just as a distraction, but I think it effects blood pressure in a way that can provide relief. Yea, I know what your thinking, lol, my wife thinks I'm full of crap too.
My Wife is quite supportive, but not much she can do help. I generally roll out of bed without waking her, cussing under my breath, and find a retreat. Our camp trailer is where I usually end up after pacing the yard as long as I can tolerate it. Lately I just leave the heater on, knowing that's where I'll end up. My kids don't really see what happens either, although they can tell by the look on my face in the morning.
Bla Bla Bla. Listen to me ramble! Better save same space on the website for others!
Thanks for the ear.
Brent
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Jabeen
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What doesn't kill you, makes you stronger.
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:)Re: another closet sufferer
« Reply #10 on: Nov 5th, 2002, 7:44pm » |
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Hi! It still amazes me every time a new person comes on-I have never met another person with these things and yet there are so many out there in the same boat. When you try and tell people about CH- as soon as you say the word "headache" they talk about migraines...it's hard. Sorry your here-but at least we undertand.
Jabeen
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