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Topic: New Here...Hello All (Read 656 times) |
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AlanG
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I love YaBB 1G - SP1!
 
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New Here...Hello All
« on: Sep 22nd, 2003, 10:21pm » |
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I have Had cluster headaches for 9 years now but only just found out it was CH. I have been misdiagnosed all this time and have gone thro hell. I estimate that in the last 5 years I have spent 3,650 hours screaming from pain. I am glad I have found this site and look forward to chatting with you all and making some friends who understand what I go thro, no one else seems to understand not even my doctor who just shrugs his shoulders and says " I cant help you" I am amazed I am still alive and that the girl friend took all the guns out of the house and hid them.....many time I thought about ending it all because of the pain, but thats not the way to go...ive found the way to go is by keeping your chin up and to keep plugging away the best you can.
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OneEyeBlind
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Yea, I can do this
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Re: New Here...Hello All
« Reply #1 on: Sep 22nd, 2003, 10:25pm » |
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Ah, that is the attitude we love to hear. Hopefully this site will provide you with some amo to combat the beast.
Welcome aboard to the love boat that has no engine but plenty of oars !!! Grab an oar and start rowing !!!!!!!!
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One cannot step twice in the same river, for fresh waters are forever flowing around us.
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Donna
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Re: New Here...Hello All
« Reply #2 on: Sep 22nd, 2003, 10:28pm » |
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Hey there Alan......welcome to the village.
We're glad you found us and hope you choose to stay as part of our family.
Tell us about yourself.......what meds you are now on, etc. Then read and read all of the great info in the left margin, and be sure to include the OUCH site button.
Looking forward to hearing more from you.
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Charlie
CH.com Alumnus
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Happy to be here
  
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Re: New Here...Hello All
« Reply #3 on: Sep 22nd, 2003, 10:29pm » |
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Welcome aboard Alan and with us you are among people who know exactly what this curse is. Stick around as there are some good ideas about dealing with this horror.
Here are two helpful links:
The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others. The first one should be shown to your doctor.
http://www.ouch-uk.org/ch/note_colleagues.cfm
http://www.netsync.net/users/charlies/
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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cootie
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sumday I'm gonna be sumbody........ ..
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Re: New Here...Hello All
« Reply #4 on: Sep 22nd, 2003, 10:34pm » |
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Hey welcome AlanG......hey maybe you can print out suma the info on here and med info and YOU help yer doc out since he can't seem to do much for you....or.......find a new one !! Good luck to ya and hope ya find sum meds combo that will help you get thru this when it hits ! Pam that's wishin ya luck in the hellhole
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Patrick_A
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Re: New Here...Hello All
« Reply #5 on: Sep 22nd, 2003, 10:35pm » |
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Welcome to the house of pain Alan! Everything you need is on the left hand side. Go check out the OUCH page and join it if you haven't already. Hang around and whenever ya need to vent people will be here to listen to you. Grab an oar and just keep rowing! If ya got something to add, then feel welcome to say whats on ur mind!
PF, Patrick
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BarbaraD
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Hugs to ya
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Re: New Here...Hello All
« Reply #6 on: Sep 22nd, 2003, 11:28pm » |
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Welcome Alan to Clusterville USA. We're a disfunctional family here, but we're here to help each other. Pull up a chair and read all that we've compiled thru the years.
We have a list of what's helped us and what hasn't. Go to your doc armed and know what you're talking about. Our job is to educate our docs. WE do the research that they dont' have the time to do. Then we take it to them and tell them what we need. If that don't work we go back and try something else till we hit on something that does work for us. EVentually something might just help. At least for a little while.
Let us know all your secrets and we'll tease you unmercifully, but that's how we get through this thing called CH. We have to laugh at ourselves.
Wishing you lots of PF days and nights.
Hugs BD
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What don't kill ya, Makes ya stonger!
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paul_b
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Re: New Here...Hello All
« Reply #7 on: Sep 22nd, 2003, 11:37pm » |
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welcome. you will get all the info and support that we have. You will also find that you can be of support to others as well and I believe that that is the best medicine there is.
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: New Here...Hello All
« Reply #8 on: Sep 23rd, 2003, 12:33am » |
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Alan, you are no longer alone in this.
Sounds like you have a wise girlfriend. I'd say she was a keeper.
As soon as you're able to read all the links and familiarize yourself with this forum, let us know how you're doing, what works, what doesn't, what drugs you have been taking, etc.
WELCOME TO THE FAMILY. LindaH
P.S. when you're more familiar with all of us you will be asked to grab an oar and start rowing. Right now...just get a handle on this site and also your HA's.
There will be time for rowing later.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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surfshi
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ONWARD THROUGH THE FOG!
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Re: New Here...Hello All
« Reply #9 on: Sep 23rd, 2003, 2:25am » |
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Yes Alan welcome, were not that dysfunctional, hope you find what your looking for here. It's the place to be,what a place to, I know how you must feel now your amongst people who are just like you. Most of the time you get what you need here; support thats what it's all about.Check the archives out WOW. Don't worry about any hard times you may be given here, we are all in it together...Surf
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Tara Ann
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It's always darkest before the dawn.
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Re: New Here...Hello All
« Reply #10 on: Sep 23rd, 2003, 3:12am » |
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Welcome aboard Alan. I hope you get some painfree time very very soon.
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http://www.myspace.com/taraann77
 
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badfly
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No matter where you are, thats where you're at!
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Posts: 141
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Re: New Here...Hello All
« Reply #11 on: Sep 23rd, 2003, 5:10am » |
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Welcome Alan, Im sorry it is CH that brought you here, but at least now you will never be alone with your pain. Get informed and you will see an improvement in your life.
NB!! BarbaraD whats with this Clusterville USA BS ?! This is not a site for USA only. Im not in the states, and never have been. I take umbradge to your elitest attitude.
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for (int i=0;i<infinity;i++)
{Shout("Get this BEAST off my back !!!");}
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Miss_Deleny
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To live life is to know love
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Re: New Here...Hello All
« Reply #12 on: Sep 23rd, 2003, 7:23am » |
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Welcome Alan! Sorry you had to look for us, but sure glad you found us!
Like others have said before me .. READ, READ, READ and then READ some more. There is a vast amount of information here to the left in those links there. Print out as much info as you can and go back to your Doc with the print outs to help educate him. If that doesn't work, find another Doc. Better yet, find a knowledgible Nero in CH.
Get your Girlfriend here as well. There is a section just for supporters. Being a supporter myself, this site, the information here as well as the people have help me understand and deal with my man's CH attacks. Thanks everyone!
Wishing you PFDaN's,
~April~
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You never know when love will knock on your door, when it does, embrace it and hold on to it forever!
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BarbaraD
CH.com Alumnus
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Hugs to ya
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Re: New Here...Hello All
« Reply #13 on: Sep 23rd, 2003, 7:44am » |
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Badfly
Guess that's a habit left over from the old days. Since DJ is in Wichita, we used to just say Clusterville USA, then we got people moving in from "across the pond". Guess I'll have to quit saying that and get "politically correct" in my old age.
So I guess now we should say, Welcome to Clusterville RFD, Phone number BR 542. Oh well..... I'll think of something better later. Right now I'm dancing with the demon and am not real creative.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Tom K
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Wait 5 days, but I'm angry now...
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Re: New Here...Hello All
« Reply #14 on: Sep 23rd, 2003, 8:26am » |
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Hi Alan, welcome to our world. It is a shame that more and more people have to meet us, but at least we can try to help eachother out with the Beast.
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"America, you're so fine, you're so fine, you blow my mind. America, America."-Bart Simpson
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Cerberus
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Whomever said that two heads are better than one?
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Re: New Here...Hello All
« Reply #15 on: Sep 23rd, 2003, 8:51am » |
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Welcome Alan,
Got Meds? tell us about it.
Sorry this is susch a short welcome, but , I been getting hit since about 6:30 A.M. CST myself.....graba an oar and get to rowing, there are lots of people here to help you in your time of need.
PF soon,
Ramon
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Killroy 2.0
CH.com Alumnus
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Kilroy 2.0 is Here! Kilroy 2.0 is Everywhere!
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Re: New Here...Hello All
« Reply #16 on: Sep 23rd, 2003, 9:13am » |
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Welcome,  I'm a newbie also. Sorry you had to find us, but now that you have there is lots of info here. And everyone has been just great.
I know you will find lots of support and understanding 
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Do the walls speak to you? Do you follow the Geek Messiah? DO YOU COMPLY?!
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Lissa
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Re: New Here...Hello All
« Reply #17 on: Sep 23rd, 2003, 9:14am » |
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Welcome to Clusterville!
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Episodic cluster survivor since 1995 at age 16.
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stuey
Guest
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Re: New Here...Hello All
« Reply #18 on: Sep 23rd, 2003, 2:20pm » |
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Welcome, glad you found out where you can find some new friends. Personalities of all kinds here. Welcome again. Stuey
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cathy
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Not all those that wander are lost......
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Re: New Here...Hello All
« Reply #19 on: Sep 23rd, 2003, 2:48pm » |
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Hi Alan, Welcome to Clusterville sorry you had to find us but you'll be glad you did....!!! don't forget to tell your girlfriend that there is also a great supporters board......
PF vibes from across the pond.
Cathy
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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echo
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Re: New Here...Hello All
« Reply #20 on: Sep 23rd, 2003, 2:50pm » |
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Welcome to the family. Sorry that the SOB has chosen you as another dance partner.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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ZAIRA
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Brave to Stand !!!
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Re: New Here...Hello All
« Reply #21 on: Sep 23rd, 2003, 3:05pm » |
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I think you’re very combative!
This will help you to efford with more strenght your beast. If you need something, we are with you!
Welcome in our club! 
Zaira
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Love yourself, Love others, Love often, Forever!
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stevegeebe
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Re: New Here...Hello All
« Reply #22 on: Sep 23rd, 2003, 7:12pm » |
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Welcome Alan.
Great attitude. Dig in as you have before. We are ready too. Keep us posted.
Steve G
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Woobie
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Re: New Here...Hello All
« Reply #23 on: Sep 23rd, 2003, 10:37pm » |
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Hello Alan - Welcome to Clusterville.
I am Cerberus's (Ramon's) wife.
Just wanted to say hello!
Tina
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goaway
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"Things take longer than they do."
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Re: New Here...Hello All
« Reply #24 on: Sep 23rd, 2003, 10:49pm » |
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Welcome aboard Alan!
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"If you get robbed by worry,.....it was an 'inside' job."
"...runnin' with the shadow...runnin' with the shadow..."
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