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Look at how far we've come. (Read 2022 times)
Agostino Leyre
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Look at how far we've come.
Sep 22nd, 2008 at 9:14am  
Do you remember where you were before you found this place?  I was in a dark place, I was getting hit so often and so hard and no one could help me.  I had never heard of O2.  I was in a pit of desperation.  I felt isolated and alone.  Dispair was my normal state of being.  Then I found this place and have gotten help with treatment ideas and loving understanding support. 

My attitude towards CH has completely changed.  There is some hope now.  Thanks DJ.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Callico
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Re: Look at how far we've come.
Reply #1 - Sep 22nd, 2008 at 11:07am  
Not to mention the great friends made through this site that make our lives more bearable because we have others who understand at our backs.  The friendships I have made here and at Davcon have made CH worthwhile, as hard as that is to say.  I too say "Thanks DJ", but also a great big thanks to so many who have been there for me when I really needed it.  I know I will never pay that much back.

Jerry
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Re: Look at how far we've come.
Reply #2 - Sep 22nd, 2008 at 11:50am  
Callico wrote on Sep 22nd, 2008 at 11:07am:
Not to mention the great friends made through this site that make our lives more bearable because we have others who understand at our backs.  The friendships I have made here and at Davcon have made CH worthwhile


good friends in deed jerry.

yeah i really don't know were i'd be with out ch.com. i like to say i'm self dependent. i spend weeks by myself on the road without having any real human contact. it doesn't bother me unless i'm in a heavy cycle. even when i'm home there really nobody that can identify with the pain. nobody that can even begin to imagine how close to the edge you can get after being terrified to go to sleep for weeks or afraid of losing your job. for years i thought i was the only one. there's no way anything can be this damn painful. surely i must be crazy. you (jerry) were the first one that i talked to on the phone. i did some heavy praying prior to that phone call. i guess you could say that you were an answer to my prayers. an angel sent to me from god.
and it was a miracle how all the tumblers fell into place and i got that load out to west bend right after we got off the phone. it was just the beginning of several good friends i've made here. maybe some day i'll get the chance to be somebodies angel.
                                                        god bless every one of you
                                                        lot of love
                                                                     johnny
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Brew
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Re: Look at how far we've come.
Reply #3 - Sep 22nd, 2008 at 12:16pm  
-johnny- wrote on Sep 22nd, 2008 at 11:50am:
maybe some day i'll get the chance to be somebodies angel.

When you do, you'll never know it. That's how angelhood works.
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midwestbeth
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Re: Look at how far we've come.
Reply #4 - Sep 22nd, 2008 at 12:16pm  
Quote:
I was in a dark place, I was getting hit so often and so hard and no one could help me.  I had never heard of O2.  I was in a pit of desperation.  I felt isolated and alone.  Dispair was my normal state of being.

That's a pretty good description Thomas.

Before I found this place I had never even heard of clusterheadaches.  After almost a year of going to various Dr's and getting no answers or relief from the pain, I googled migraine headaches (what the Dr told me I had) and started clicking on links.  When I clicked on ch.com, I could not believe what I was reading...........people describing exactly what I was dealing with.  I do not even want to think of what my life would be like if I had not found ch.com

Thank you to DJ and also to everyone else who keeps rowing the boat.

Beth
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Re: Look at how far we've come.
Reply #5 - Sep 22nd, 2008 at 1:46pm  
What amazes me is the sheer number of new people coming to the board every week. People who would have gone on hurting, alone, for years. What a beautiful accomplishment to put on your pearly gate application. You rock DJ.

Guiseppi
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Re: Look at how far we've come.
Reply #6 - Sep 22nd, 2008 at 1:52pm  
You're right! DJ did it! Thank you, DJ, for bringing together some of the strongest, smartest, wittiest  most caring people I've ever known!
Clusterville ROCKS! Cheesy

Just wish we could get the PF part working for everyone......

Cathi
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Re: Look at how far we've come.
Reply #7 - Sep 22nd, 2008 at 7:20pm  
My take is a little different, (of course). I actaully got MORE depressed after I was diagnosed and found this place, learning the truth and seeing it "realized" was not so cool. Ignorance is bliss I guess, and certainly not a slam on this place, just the way I felt at the time of discovery.

That being said, I was more confused than anything. Yeah the pain was terrible but I got used to it from all the years of the "sinus headache" diganosis (I MUST be a wuss if a sinus headache does this to me and everyone else around me seems to be able to deal with them!)

I will forever be grateful for the advice and support I've gotten here. I've gotten (and given, tis true) plenty of crap here too, but nothing will take away the relief i felt from understanding I was not some sort of lone freak of nature.

And the info of O2, yeah, um , that too!

Yes kudoz to DJ for doing this. We all do things in our lives, some matter lots and some matter little, in our minds. Must be cool having done something that matters so much in the minds of so many.
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Re: Look at how far we've come.
Reply #8 - Sep 22nd, 2008 at 8:37pm  
As a supporter, I found this place to have many phases of acceptance. Lisa was 3 hours away all by herself at college when she was first diagnosed. She found all of you and was so excited. My first feelings were very negative, total denial how could you talk my daughter into having such a complex problem?? Stop putting things into her head! But as time passed I found everyone was there to help. Linda, Dave(in England), Paul, and Cyn especially in those first days. Lisa had a great team of nuerologists and all of your advice. Several people included me in their chats and answered my endless stream of questions.  Thank you so much for helping us through the beginning! We would have been lost without this site DJ!

Charlotte
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Re: Look at how far we've come.
Reply #9 - Sep 22nd, 2008 at 9:07pm  
hell i still haven't been professionally diagnosed. mom found a newspaper article on cluster headaches. that led me to a google search and i ended up here. i've been a member for a few years but never got real involved until my last cycle.
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Ree
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Re: Look at how far we've come.
Reply #10 - Sep 22nd, 2008 at 9:11pm  
and blonde that I should be sat here staring at the screen trying to figure out who the heck this guy was named Agostino Leyere...who posted 3400 somthing times and I didn't know him...

I can't imagine what our lives would have been like without our friends here at CH.com... and OXYGENNNNNNNN... thanks Linda H for showing Dave how to take care of his CH without hurting himself.  We have only made one Convention in all the years we have been here but you are all  in our hearts every day...
Love to you, thanks for making our lives a little easier considering.
Ree
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Linda_Howell
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Re: Look at how far we've come.
Reply #11 - Sep 22nd, 2008 at 10:31pm  


where was I?

    I already knew what I had.   I had the tools to abort.  What I didn't know was that there were others.  In 1998 I got my very 1st computer and after swearing and cussing over this keyboard someone showed me how to use a search engine.    I googled cluster headaches and up came DJ's new site.   That was sometime in 1998 and I have been here ever since.

  (wish you and Dave could be at more of the conventions Ree  Embarrassed)
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Mastifflvr28
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Re: Look at how far we've come.
Reply #12 - Sep 22nd, 2008 at 11:47pm  
Women don't get clusterheadaches Smiley

Found ch.com in 1998...first convention in 2000...never looked back, read the board daily for 10 years.

Me thinks it's time to hit the paypal button......look
DOWN!!


Mast
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Callico
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Re: Look at how far we've come.
Reply #13 - Sep 23rd, 2008 at 12:23am  
First time I've been called an angel!!!  But then, Lucifer was an angel too! Grin

All I did was pass along what others have done for me.  I remember when i was about to pack it in and  a couple of people here were able to get me to hang on a little longer until I could get a handle of dealing with the beast.  I'll never forget the first Davcon.  Linda and I drove three hours just to stay for about 45 mins and had to drive back.  Thomas cracked three ribs and gave me a back adjustment at the same time with his hug Grin, and we both cried a little.  I'll never forget that, and the bond that was forged then will never be broken.  The others I met then are indelibly imprinted in my mind as well.

that was the first time I got hit that I didn't feel like I had to run and hide from society like I had some sort of social disease.  A couple of people asked if I needed Imitrex or O2 or anything, then they just left me alone until I was done and accepted me back into the conversation as if nothing had happened. 

I know one of the things I told my wife on teh drive back home was that Davcon was what church should be like as far as the love and acceptance, but often is not.  It has changed the way I deal with others at church as well.

Jerry
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George
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Re: Look at how far we've come.
Reply #14 - Sep 23rd, 2008 at 12:52am  
I suppose I'm a little different as well.

I've known I had CH (episodic) for many years before I found this place in 2000.  So I'd found a sort of accomodation to it--it was simply a part of what I am.  Learned to live with it and through it.  It just was.

But what I never knew was that there were others who'd fought the same dark battles that I had--and the discovery of others was a revelation.  Think of it--there are others.  An astonishing thing.

So--what's the right thing?  What should I do?  I have little to offer other than my experience with it, and time...  The best that I can tell is that CH can be survived and endured, and the fight is worth it.  Life is a gift, given every day--CH or not.  If nothing else, I can give testimony to the fact that we are stronger than we know, and that we can survive.

We live, we breathe, we endure. 

Many thanks to you--my brethren--and my brave companions.  And many thanks to DJ for this, my home.

Best wishes,

George
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Re: Look at how far we've come.
Reply #15 - Sep 23rd, 2008 at 8:36am  
Got a new computer in 1998 and FOUND THE INTERNET. I had gone chronic and was really in bad shape -- all alone in HELL! I typed in Clusterheadaches and lo and behold - this site came up (well not exactly THIS site, but the OLD one).

Gee, there were PEOPLE on it who actually HAD CH and understood what I was talking about. Back in those days we just couldn't wait for DJ to get home from work and "update" the posts (it wasn't instant like it is now - sometimes it was only updated a couple of times a day).

I think the best thing I've gotten out of this site is - I regained my sense of humor (and it had totally disappeared). No matter how bad things got, someone on here could make me laugh about something and I always felt better. As the years have gone by, this hasn't changed.

Those of us who were around in 98 know how far we've come... and are very grateful to DJ....

Hugs BD
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Re: Look at how far we've come.
Reply #16 - Sep 23rd, 2008 at 4:35pm  
Quote:
that was the first time I got hit that I didn't feel like I had to run and hide from society like I had some sort of social disease.  A couple of people asked if I needed Imitrex or O2 or anything, then they just left me alone until I was done and accepted me back into the conversation as if nothing had happened.


That's it.....right there. Although I had been pain free for almost a decade when I got here, I had to stick around. I had no idea. Because I saw neurologists anyway, I had a fast track on knowing what it was. I glad I stuck around and I'm still amazed at what you people know about this horror.  Cool

Charlie
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Re: Look at how far we've come.
Reply #17 - Sep 23rd, 2008 at 9:26pm  
Quote:
That's it.....right there. Although I had been pain free for almost a decade when I got here............


There you go again, showing off Smiley
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Jonny
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Re: Look at how far we've come.
Reply #18 - Sep 23rd, 2008 at 9:41pm  
-johnny- wrote on Sep 22nd, 2008 at 9:07pm:
hell i still haven't been professionally diagnosed.


You know what that means dontcha?.......you have meegraines!......LMAO!  Grin
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Re: Look at how far we've come.
Reply #19 - Sep 23rd, 2008 at 9:56pm  
Quote:
-johnny- wrote on Sep 22nd, 2008 at 9:07pm:
hell i still haven't been professionally diagnosed.


You know what that means dontcha?.......you have meegraines!......LMAO!  Grin

man you don't need no stinkin doctor Grin
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Jonny
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Re: Look at how far we've come.
Reply #20 - Sep 23rd, 2008 at 9:57pm  
-johnny- wrote on Sep 23rd, 2008 at 9:56pm:
Quote:
-johnny- wrote on Sep 22nd, 2008 at 9:07pm:
hell i still haven't been professionally diagnosed.


You know what that means dontcha?.......you have meegraines!......LMAO!  Grin

man you don't need no stinkin doctor Grin


True.  Wink
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Re: Look at how far we've come.
Reply #21 - Sep 23rd, 2008 at 9:59pm  
Quote:
-johnny- wrote on Sep 22nd, 2008 at 9:07pm:
hell i still haven't been professionally diagnosed.


You know what that means dontcha?.......you have meegraines!......LMAO!  Grin

yeah and i treat most of mine with an aspirin or 2. you guys are a bunch of winey asses.
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Re: Look at how far we've come.
Reply #22 - Sep 26th, 2008 at 10:52am  
I was alone; now I am not.

Through this site, I met my best male friend and my best female friends.
Through this site, I found medications that WORK!!!!
Through this site, I found acceptance of the me I am.
Through this site, I've been able to help others in small ways.
Through this site, I've learned to BE the woman I am instead of pretending to be someone else.

In looking at what I just wrote,  this site has brought me much more than help with my cluster headaches. It and the people here have helped me grow, love, accept myself as I am....
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Re: Look at how far we've come.
Reply #23 - Sep 26th, 2008 at 11:06am  
What a great, relfective post, Thomas.... Kiss
CH.com has given us all so much.  I'm thankful for this place every day.  I'm thankful for the help and support we've received through the years......and thankful for the wonderful friends/family here.  This bunch is some of the best on this earth.

Yep.....thanks, DJ.....thanks for bring Stephanie and Brandon to us too.  We love you all dearly.

Much Love,
Jackie  
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Re: Look at how far we've come.
Reply #24 - Sep 26th, 2008 at 12:32pm  
Jackie wrote on Sep 26th, 2008 at 11:06am:
What a great, relfective post, Thomas.... Kiss
CH.com has given us all so much.  I'm thankful for this place every day.  I'm thankful for the help and support we've received through the years......and thankful for the wonderful friends/family here.  This bunch is some of the best on this earth.

Yep.....thanks, DJ.....thanks for bring Stephanie and Brandon to us too.  We love you all dearly.

Much Love,
Jackie  

i've also met some classy people because of ch.com Wink
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