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        New Message Board Archives >> Jul-Sep 2003 >> New Here...Hello All
        
(Message started by: AlanG on Sep 22nd, 2003, 10:21pm)
Title: New Here...Hello All
Post by AlanG on Sep 22nd, 2003, 10:21pm
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.
Title: Re: New Here...Hello All
Post by OneEyeBlind on Sep 22nd, 2003, 10:25pm
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 !!!!!!!!
Title: Re: New Here...Hello All
Post by Donna on Sep 22nd, 2003, 10:28pm
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.
Title: Re: New Here...Hello All
Post by Charlie on Sep 22nd, 2003, 10:29pm
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
Title: Re: New Here...Hello All
Post by cootie on Sep 22nd, 2003, 10:34pm
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
Title: Re: New Here...Hello All
Post by Patrick_A on Sep 22nd, 2003, 10:35pm
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
Title: Re: New Here...Hello All
Post by BarbaraD on Sep 22nd, 2003, 11:28pm
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
Title: Re: New Here...Hello All
Post by paul_b on Sep 22nd, 2003, 11:37pm
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.
Title: Re: New Here...Hello All
Post by Linda_Howell on Sep 23rd, 2003, 12:33am


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.
Title: Re: New Here...Hello All
Post by surfshi on Sep 23rd, 2003, 2:25am
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
Title: Re: New Here...Hello All
Post by taraann on Sep 23rd, 2003, 3:12am
Welcome aboard Alan.  I hope you get some painfree time very very soon.
Title: Re: New Here...Hello All
Post by badfly on Sep 23rd, 2003, 5:10am
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.
Title: Re: New Here...Hello All
Post by Miss_Deleny on Sep 23rd, 2003, 7:23am
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~
Title: Re: New Here...Hello All
Post by BarbaraD on Sep 23rd, 2003, 7:44am
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
Title: Re: New Here...Hello All
Post by Tom K on Sep 23rd, 2003, 8:26am
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.
Title: Re: New Here...Hello All
Post by Cerberus on Sep 23rd, 2003, 8:51am
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
Title: Re: New Here...Hello All
Post by gmlevenhagen on Sep 23rd, 2003, 9:13am
Welcome,  ;D 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.
;D

I know you will find lots of support and understanding :)
Title: Re: New Here...Hello All
Post by Jewel on Sep 23rd, 2003, 9:14am
Welcome to Clusterville!    :) :) :)
Title: Re: New Here...Hello All
Post by stuey on Sep 23rd, 2003, 2:20pm
Welcome, glad you found out where you can find some new friends.  Personalities of all kinds here.  Welcome again.  Stuey
Title: Re: New Here...Hello All
Post by cathy on Sep 23rd, 2003, 2:48pm
Hi Alan, Welcome to Clusterville sorry you had to find us but you'll be glad you did....!!!  ;D don't forget to tell your girlfriend that there is also a great supporters board......

PF vibes from across the pond.

Cathy
Title: Re: New Here...Hello All
Post by echo on Sep 23rd, 2003, 2:50pm
Welcome to the family.  Sorry that the SOB has chosen you as another dance partner.
Title: Re: New Here...Hello All
Post by ZAIRA on Sep 23rd, 2003, 3:05pm

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
Title: Re: New Here...Hello All
Post by stevegeebe on Sep 23rd, 2003, 7:12pm
Welcome Alan.

Great attitude.  Dig in as you have before.  We are ready too.  Keep us posted.

Steve G
Title: Re: New Here...Hello All
Post by Woobie on Sep 23rd, 2003, 10:37pm
Hello Alan - Welcome to Clusterville.
I am Cerberus's (Ramon's) wife.
Just wanted to say hello!

Tina
Title: Re: New Here...Hello All
Post by goaway on Sep 23rd, 2003, 10:49pm
Welcome aboard Alan!
Title: Re: New Here...Hello All
Post by UnsolvedEquation on Sep 23rd, 2003, 10:54pm
Another welcome to you Alan. You've finally found your home on the web !  :)
You should post what treatments you are trying now and the results. Ask alot of questions...there's always someone here to help...And do alot of reading here at this site ! Also check out OUCH !
Goodluck !


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