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Topic: So how about you? (Read 483 times) |
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ave
New Board Hall of Famer
She is beside herself; her favourite position
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So how about you?
« on: Jul 5th, 2003, 2:38pm » |
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I stumbled across this board somewhere in the fall of 1999 as far as I can tell.
I was not familiar with the Internet and messageboards at the time, and left again after my first and (I think only) post. I only returned in the spring of 2000. And I stayed. Why am I still here?
My reasons for coming here were, initially, that when the neuro diagnosed me he wanted to give me some info but had just run out of leaflets. I picked up info here, but also bought the books I could get at home.
I was rightly diagnosed, I had an intelligent family doctor, I had the medication and O2 I needed and great support at home. I was not lonely, I have a fulfilling profession and many friends.
So why? Why go on visiting a message board where all the action happens when I must needs sleep? Where lots of people don't know me because I am not in their exciting bantering discussion threads? Sure, I want to share my knowledge, but I could do that anywhere...
Why become a member of ouch, when we have a perfectly good cluster chapter of the headache organisation at home ('course I am a member of that org. as well!).
It is because of you, the people here. Your freely given friendship and emotions, your readiness to support others when you have enough on your plate yourself, as a sufferer or a concerned supporter.
And it is only for that, and not for the doctors' speeches, that I will be coming to Alexandria Bay.
I just want to meet with you and you and you, just this once, and tell you personally how much I love you.
(No, not YOU, how dare you?  )
That's why I am still here. How about you?
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There is a break in reality. Do not adjust your mind.
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jonny
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Washed up on these shores Oct 5th 1999.
Why do I stay?.....cause there is NO ONE that could ever relate to whats in me head but my family here.
Get ready for one big ass hug, Ave.....its coming soon ;D
...............................jonny
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BlackDog
New Board Junior
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Re: So how about you?
« Reply #2 on: Jul 5th, 2003, 3:48pm » |
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Quote:cause there is NO ONE that could ever relate to whats in me head but my family here.
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That is my biggest reason for coming here. Also, the people here helped me out at the worst moment of my life, by just being here and listening. I feel it is now my duty to be here for someone else in their moment of crisis and help support them. I was ready to leave this board once. A very wise man here once told me, "chill, hang and support" (you know who you are  ). That is what I do here. I dont 'banter' too much, but I read and follow all of it. Some is very entertaining. But I am here to support anyone who needs it. Anytime. This place saved my life. I want to help do that for someone else.
Darren 
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sueellen83
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Shoot me and get it over with!!!!!
 
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Re: So how about you?
« Reply #3 on: Jul 5th, 2003, 5:07pm » |
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I found ch.com in Sept. 2002.
I couldn't believe there were actually others out there who understood what I had been going through for 20 some years.
I have been gone for a while but, I'm back. Y'all couldn't get rid of me that easy! LOL
This web site and the family here have brightened my life, just knowing you are here.
I agree with what Darren said I just want to be there for others like you have been here for me.
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catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
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Re: So how about you?
« Reply #4 on: Jul 5th, 2003, 5:23pm » |
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I found CH.com about a year ago. I was having a hard time getting a diagnosis and they had suspected migraines with clusters so I went looking for clusters on the net.
I found this site, and when I read the stories here I cried like a baby. I remember saying to my hubby "These people are telling my life story". Ever since then I've spent my time trying to pretend it ain't so LOL. I don't wanna have clusters!
But I do, so in the mean time I'll put my energy and effort into getting rid of them
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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Jayne
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Pull my finger!
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Re: So how about you?
« Reply #5 on: Jul 5th, 2003, 6:41pm » |
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I found this place 1999, and not too soon either,,I was at the end of my tether, and thinking about calling it a day. I met some great folks and got a lot of advice and help, and got quality of life back. So I can definatley say I owe my life to this place and I am not joking.
So thanks to everyone and especially Deej (my hero)
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If you haven't laughed today, it's been a wasted day.
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: So how about you?
« Reply #6 on: Jul 5th, 2003, 6:55pm » |
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because we all KNOW the beast, only sufferers know how bad it hurts...
because you don't have to explain anything about what you are going through...
because, no matter where you are from, what your age or skincolour is, we are related in a very strong way...
wish you all beastfree days and nights!
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Locomotive_Skull
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Quote:| because we all KNOW the beast, only sufferers know how bad it hurts... |
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Well, that's why I am here. I really don't know any of you, so I can't rightly call you my family. But....If you have what I have....And I have what you have...Makes for an interesting venture. I have been reading alot of old posts and trying to get the feel of what some of you are like. I realize we all have religious/political/moral and overall just plain different stances on life in general, but no matter how confrontational, or different we may be, unfourtanatley, we have something very serious in common. I really do hope to meet some of you in "real life", because trust me, I know it hurts. 
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MarkHW
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Re: So how about you?
« Reply #8 on: Jul 5th, 2003, 8:44pm » |
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Same reason...
The people are awesome and understand what I'm going through. I figure if we're all in this together we can help each other with support and our experiences.
If we don't help each other... who will!
Mark
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The clusterhead formerly known as williamsmh.
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Wendy the Brit
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Hey Ave
This place was responsible for me getting the world record for speedy diagnosis (first CH pain to diagnosis in less than 3 weeks- don't hate me people!!)
I am awake when you are Ave, message if ever you want a chat!
Fubar says I am a nut because I am also awake when this board is too!
Weird sleeping habits came long before CH though.
Talk to you sometime Ave, enjoy meeting everyone, I envy you.
W the B
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Cooked Brain
New Board Old Timer
a.k.a. Max Payne, YOUCH this hurts...
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Re: So how about you?
« Reply #10 on: Jul 5th, 2003, 9:07pm » |
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Wendy: mine was even shorter, within five minutes!
For years I thought I had plain migraines, since a year or so I came to the conclusion that it was CH. I did't get any medical help, because after reading the situation of some chronical sufferers I praised myself lucky with only 1 attack every two or three weeks. But the last month I started getting them a couple of days in a row, several attacks a day, at night, after waking up and sometimes in the evening. They started to get so bad that two weeks ago during a kip8-9 attack my mother took me to the doctor's. I was crying like a little child all the way and could hardly see where I was walking. While waiting to go in I just sat there and cried, the people before me in line even had a tough time to deal with it and they all offered me to go in first as I had no appointment.
When I went in with a swollen left eye and dripping left nostril my doc asked me three questions, he looked at my bloodpressure, took a book off the shelf and after reading for a minute he said: "this looks like cluster."
I was so amazed!!! I was on the down-side of my attack and I told him some more about the history and frequency, asked him what I wanted to know and he gave me Relpax and Deseril. Heavy stuff, but they are dealing with the beast. I only get light shadows upto kip3-4, well as you know that is sunshine if you are getting used to kip 8-10 three or four times a day...
I Have my next appointment in three weeks. I am so very thankful that I can sleep through the night again, only that makes such a difference in how you deal with it.
Hope you are all doing well, PFDAN
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Wendy the Brit
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Hey wow!
And I thought I was lucky.
Shussh though, we'd better not crow. Some poor bastards here and people I met at the UK Convention took 20 years to get a diagnosis and some help.
I cannot begin to understand that kind of courage
W the B
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Cooked Brain
New Board Old Timer
a.k.a. Max Payne, YOUCH this hurts...
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Re: So how about you?
« Reply #12 on: Jul 5th, 2003, 9:20pm » |
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The courage and strength!!
Guess we are just lucky... VERY lucky. I have read all those stories too, and I was in fear of going into the medical mill for a long time too, I even was afraid that they would give me the common "ow it must be stress" kind of thing... I must say, after 18 years at the same GP, Ihe has really raised his mark in my opinion, just because of this diagnose I count him to the better half of doctors. And I have seen some of the bottom half too, believe me!!
The great thing about this site is that it helps on diagnosing yourself, at least it helps you to move in the right direction... Very glad to have found you all!
PFDAN
PS: Wendy, by any chance do you know if Deseril is supplied in the UK?
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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kim
New Board Newbie
I love YaBB 1G - SP1!
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Re: So how about you?
« Reply #13 on: Jul 5th, 2003, 9:25pm » |
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Ave, I fell through the door last year, disparate and sick, entering a cycle I can't count how many went b4.
Read the introduction pages in a mix of emotions hard toexpress. Called to my husband....and i began to read him the stories........my throat closed up and I just balled like a baby. 25 years and here were folks like me talking and laughing, understanding one another..............
this is where i belong. i marched alone and found where i'm supposed to be. that's all.
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Wendy the Brit
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Dear Murazzio (can't be your real name!)
Yes it is, according to the web it is made a company called Alliance here. (Deseril is Alliance's brand name for Methysergide)
Is it your drug of choice??
W the B
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Cooked Brain
New Board Old Timer
a.k.a. Max Payne, YOUCH this hurts...
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Re: So how about you?
« Reply #15 on: Jul 5th, 2003, 9:35pm » |
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It's how my friends call me
It is not my own choice, my doctor said it would be the first the he wanted to try to prevent the attacks starting. In Holland Deseril is made by Novartis, it helps prevent the full-blown attacks, only get some shadows, but I am having some weird side effects. Still I will take them twice a day, as the last attacks have been absolutely killers.
what is your best drug?
PFDAN
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Azrael
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Sometimes... Being good just ain't worth it.
  
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Re: So how about you?
« Reply #16 on: Jul 6th, 2003, 1:16am » |
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I started haunting this site over a year ago, and the reason why I continue to stick around is to get the support I can't get anywhere else, even if it's only from trying to support others when I can.
PFDAN...................................... Drk^Angel
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"Hello police? I would like to report a robbery. Someone stole all my beer while I was drunk."
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Charlie
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Happy to be here
 
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Re: So how about you?
« Reply #17 on: Jul 6th, 2003, 5:39am » |
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I came here in September of 2000. My puter was new and I was looking up medical stuff that applied to me. I spent a whole day sobbing in the guest book and posting Dr. Wright's technique. I came here after lurking for a couple days and did the same. I seemed to get along well here. I stay for the simple reason that DJ has created something unique. Nowhere have I found a message board this good. It's so helpful because people use the thing. It's not a chore to read. For me, it's like a form of chatty group therapy. It's fun and hard to desert.
By the way, I was lucky too. Dr Wright, who was treating me for epilepsy, saw me quickly and after a few minutes, said "you're having cluster headaches." He did no tests and had a four page black and white flyer on his desk with a line drawing of a person having an attack. I found out quickly that I was screwed but not going to die. He showed me the circulatory technique which worked for me when I was hit a few hours later. That was more than 30 years ago.
Sorry for the run on. I’m worse in person.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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BarbaraD
CH.com Alumnus
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Hugs to ya
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Re: So how about you?
« Reply #18 on: Jul 6th, 2003, 8:56am » |
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You kids should have been here when there were only a few of us... back when DJ first put up the board. Yeah, I was here WAYYY back then. Me and Kip and lcbob and Drummer and Elaine and several others that don't post much anymore. We leave all that to you newbies. We just drop in ever so often to make sure you're helping each other the way we did back then.
WE got to know each other better than we knew our families because we were so happy to find someone who understood how we felt. This board has become a part of all our lives and the people on it have become a part of all our families.
The first time the BIG FIVE met in Dave's garage in Rochester NY to began to form OUCH (oh yes I was there) was an eye opening experience. It was instant BOND and something that we'll never forget. I'm still trying to figure out HOW I picked Drummer out of a crowd at the airport without ever having seen a picture or having a clue of what he looked like- but I did. It was weird - he was weird, but it was love at first sight.
And DJ - what can I say about him. I wrote his mom a note telling her what I thought about him. She really done good with that boy.
If you really want a lump in your throat - go back and read the archives and see how Clusterville was when we first started and see how close a family can get. See what support is really like.
I'm getting sentimental again. That's what happens when you get old.
Hugs BD
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What don't kill ya, Makes ya stonger!
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rumplestiltskin
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won't you be my neighbor?
« Reply #19 on: Jul 6th, 2003, 10:35am » |
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...I'm here to feed my ego. I type some shit and people complement me.....oh...and as everywhere else I go...I'm here for the babes. Clusterchicks are an easy mark. A little foreplay of O2 and zomig and a "special" body rub of vinegar (yes dear I have to rub it there) and ya gotta homerun!There's nothin sounds so sweet as some husband askin " please do whatever you can to help her"
I even scored a "take home" chick here. I love this place.
Been here raisin eyebrows since July of 99. I found the tools to manage my CH. No greater thing can I say. I have to try to give that back. It took me reading "verapamil and o2" posts over and over before it sank in....I was convinced nothing could ease my pain.
Someone new will arrive today. I check in to see if I'm needed. We have a lot of CH.com prolific posters now so I don't have to post much. They drive me crazy with there hundreds of inane posts...but I thank Gog they are there in force for the new folks. Bless their lil key-peckin hearts.
The numbers of folks that are bein helped here is at a staggering rate.
I never was much of a chatter or e-mailer. I know a lot of the folks here do and are deep friends now. I envy their ability to enter and build interpersonal relationships. I tend to be a loner...but when the chips are down....like when Addie got sick....these people reached thru the monitors, beyond the black squiggles and touched my heart.
My CH has been breakin thru my Verapamil program. The next thing I'll try...I found here.
Walk in the sunshine
den
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catlind
CH.com Alumnus
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Taz taught me the cluster dance
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Re: won't you be my neighbor?
« Reply #20 on: Jul 6th, 2003, 10:45am » |
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on Jul 6th, 2003, 10:35am, rumplestiltskin wrote:I tend to be a loner...but when the chips are down....like when Addie got sick....these people reached thru the monitors, beyond the black squiggles and touched my heart.
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A true friend is someone who reaches for your hand and touches your heart
I may be one of those 'little peckers' ... but I use the above as my tag line for a reason. I've seen so many people's lives touched by the people here, it truly is amazing.
Your wisdom and words are a gift to us Den
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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forgetfulnot
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Been here so long I don't remember anymore. What Den and Cat said x 2.
Lee
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