I know I am early in posting this.

12 years ago Darren Johnson started this site with his own money and his own time.  He did it because there wasn't anything on the web relating to this disease he had.  He wanted to start a site where anyone who had CH could find someone in the dark of their night...to talk to.  He not only accomplished what he set out to do but more...

O.U.C.H, starting in the U.S. and then  in a lot of countries formed, much has been accomplished with all the OUCH's as well as clusterbusters, etc.

I personally owe DJ my life.   I had stock-piled my meds and was about to take my life when in 1998 I got my 1st. computer and typed "cluster headaches" in a search engine.  I've talked to so many people over the last 12 years who have related many stories just like mine.

I started this thread early because I can't think of any better honor we could give DJ than to tell what this site has meant to us.  How it has helped, changed or altered our personal lives.

How about you?

I am no longer alone in supporting my husband. And he is no longer alone in his pain.  We are blessed and humbled by DJ's commitment to his fellow clusterheads.

I have met the best friends in the world on this board.  They have become my family.

"Thank you" is not NEARLY enough.

It was what...6 years ago, maybe 7 I can't even remember anymore. 

After 4 weeks of treatments and no relief, the GP mentioned tumor and set up an MRI.  I spent the week's wait believing I was dying.  MRI was clean, and I was back to square one, until he called me on a Sunday night saying that he thinks it may be Cluster Headaches.

I went online and started searching and I found this family.  Before I even got in to see the specialist, I signed up seeking answers and hope, and I found hope first, and answers after. 

I had to wrap my mind around the fact that there was no cure.  Also that all the many years of pain I'd had before were mis-diagnosed, because the pain was always the same, just now, it had manifested differently than in the past.

Linda and Jackie were the first to take my hand and help walk me through the first steps of acceptance, and away from fear. 

If these two women hadn't befriended me, I'd probably have lost it and just gone down a path I can't even believed now, I ever considered. 

But were it not for Darren, DJ, I wouldn't have found "here". 

This place saved my sanity and my life.  I count the folks here as my best friends, as they know me deeper and more purely than any on earth. 

Some say don't let this disease define you.  But this disease does define the people we become, and I've found that some of the most compassionate and understanding and helpful people reside right here.  Not because of this disease, but in spite of it.

Thank you DJ.  And thank you my CH family.

November 99 for me. In the beginning it was Bob P, Kip, Jonny, Todd and Ted that held me up long enough to make me learn.

Linda_Howell wrote on Apr 9^th, 2010 at 9:41pm:

I personally owe DJ my life.   I had stock-piled my meds and was about to take my life when in 1998 I got my 1st. computer and typed "cluster headaches" in a search engine.

Mine's similar except it was Sept. 2000 and I had come way too close to drowning myself.  I typed it into the search engine the next day.

Thank you Deej. :-*

Words can not describe how important this site is to me and has saved my life countless times since I found it back in late summer 1999.  Following a closed head injury at age 11, my CH's immediately began to ruin my life as an episodic sufferer.  At that time, they gave me a little bluish colored pill that dissolved under my tongue when I felt an attack.  That was the best treatment I received until I joined this site. 

Between the ages of 12 and 30 yrs old I had been to every specialist for every misdiagnosis taking all sorts of meds that never worked and some that created additional medical problems.  I knew my symptoms but no doctor was able to label me with CH's, just migraines caused by....  They blamed it on my closed head injury as organic brain damage, think they said not enough Dopamine in my brain.  They blamed it on smoking pot at age 11 which was laced with PCP/angel dust and I hallucinated and overeacted I guess when I coincidentally got hit by the beast.  They blamed it on a deviated septum in my nose from a fracture that happened at age 8.  They blamed it on the weather, seasonal allergies, teeth cavities/silver fillings, stigmatism in my eye, hormones growing up, etc., etc. 

Been through every CAT Scan, MRI, E?G, etc., been in and out of jail for 'bad temper' toward ER Hospital room doctors, been in/out of countless ER clinics and ER hospitals, lost several jobs, lost several girlfriends, missed out on countless fun occasions, etc...

Never an answer nor a med that worked until I stumbled upon this website that answered my life-long question "What the hell is wrong with me and how do I stop this pain?"....I self diagnosed myself on this website back in 1999 when I first joined.  The Cluster Quiz was right on target and every question was "yes, that is my symptom".  The transitional, preventative and abortive treatments each and all work great for me!  Finally, after all those years of being misdiagnosed and treated like a test rat without positive results...finally, I was pain-free, I found where I am not alone, a true home with a caring supportive knowledgeable family, I found Clusterville  ;)

I am now 41 yrs old and can proudly say after suffering since I was 11 yrs old, that the people who contribute on this site have been my angels.  I read and ask questions, other kind members on this site always seemed to have the right answers.  Then I used this knowledge and began to help support others like me and even to educate neurologists, GP's and headache specialists.  Who would've ever thought I would be teaching them and letting them know what med and how to prescribe for me, lol.  I volunteer on a Facebook Group everyday for the last 4 months as a moderator and help the newbies with the basics, while always referring them here and to OUCH.  I formed several Meet & Greets in my hometown Las Vegas and have been honored with a nice write-up article in the OUCH newsletter for my efforts.  I face the fact that I grew up with the beast and it will be with me for life, so my personal goal is to be supportive of others afflicted.  Never in a million years would I have thought I would be alive today at 41 yrs old because there have been many times every cycle that I have thought the pain is not tolerable and there is an easy way out.  But because of the empathetic members of this site that I am still alive and doing quite well for myself under the circumstances.  The supportive members on this site over the on/off 11 yrs since i joined have saved my life by educating me, being tough with me making me do alot of my own research-yet guiding me in the right direction, which created my desire to learn more, an obsession to understand myself better and this resulted in my 31 yr long battle with the beast that I have been fortunate enough to be in the longest remission ever, almost 5 yrs. :)  Prepared for the worst, but Praying for the best!

Thank you is only a two word common polite mannerism/phrase, unless you truly are sincere...

DJ, I THANK YOU WITH MUCH SINCERITY FOR STARTING AND MAINTAINING START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Happy Anniversary Clusterville  :) 
Sincerely,
Gregg in Las Vegas

Thank you always

i'll say this. all the time i spent out on the road the thing i loved the most was meeting some of you across this country. knowing that i could check in gave the confidence to make it to california and back and have my bases covered as far as getting o2 2000 miles away from home or have to a  shoulder to cry on if i needed one. meeting some of you was the one of the highlights of my career.  i feel enlightened and privileged to be among the likes of all of you. 

                                          
only thing i don't like is the initiation but other than that.....
                                   love you guys
                                                 -johnny-

I truly can say that you saved my life  once again this yer Deej. I had been in remission for over 2 years. I had never had longer than 6 months. I thought they were gone. But the beast  came back worse than ever. I've had to stop work, which I've never had to do in the past and had all but given up.  I was finished, at the end of my rope until my family at ch.com reminded me that I'm not alone and someone is always there to help you no matter how hard it is. They also helped me realize that I have a son and family at home who need me there and how selfish it would be for me to leave him there without a father.
DJ thank you so very much for this place, BROTHER! I'm sure I don't stand alone when I say that I probably wouldn't be here today had you not made this site.

WE LOVE YOU!
Pfunk 8-)
Patrick Cimino

oh yea!  It's ch.com birfday time again.

Time to click the DONATE button below!!

I found ch.com in 2000.  Happy b'day deej,
Mast

In '98 and brand new to the internet - I found CH.com and, as Linda said - my life changed... (I also had my plan). There were people here with the horrible thing that was killing me and they UNDERSTOOD.

There was D.J., Kip, Bob G, Bob P, Drummer, Nancy, Margi, lcbob, our "kissing" Italian, and gosh, so many others to talk to, laugh with and just share stories of this dreaded disease.

We "bonded" on this site and became family and then we began meeting in person and the bonds grew stronger. It still amazes me how strong this "family" is and how supportative it's remained over the years.

Thank you DJ from the bottom of my heart and know that I'll always love you. :-*

Deej, this site was the only find that changed a snowballing terrible suffering. 

Thanks always for your being the best to start helping so many with this.

You'll always have my thanks, DJ, and my greatest respect for what you've accomplished here. 

It's truly a rare and remarkable thing.

All the best, always,

George

I think reading those testimonials for the first time did  it for me. To finally realise that I was no longer alone was definitely a life changing event. After 20 years of suffering I finally have the proper medication and character thanks to you good people to fight back against this horrible infliction.... [smiley=thumbsup.gif]



Lefty

The collection of information here and support is so empowering, it gave me hope when I was feeling hopeless. That is priceless!
I found myself engaging in life and caring at a time that I was depleted.

Thanks Deej, and thanks Linda for staring this.

Steve

Thanks again DJ.  Happy Birthday to CH.com!

As I told you before you saved my life.  I was at the point of trying to find a way that would not impact my family any more than I had to do to end it all when I found the original board through a trial subscription to the internet that I couldn't afford after the 30 days.  That gave me hope.  Then I was able to get on with one of the free services a couple of years later, then with what I learned here I was able to get my life together enough to start digging my way out of the financial hole I was in.  I couldn't afford to go to the OUCH conventions, although I tried every thing I could think of to do it.  I drove 3 hours to go to the first Davcon, met some wonderful people that really cemented what CH.com started, spent 45 minutes and drove home because I had to be there that night.

DJ, I can honestly and gratefully say you are in the top five people who have impacted my life, and I bless you for it.

Jerry

a thumb's up from me .....
[smiley=bow.gif] [smiley=bow.gif] [smiley=me&mb.gif] [smiley=tekst-toppie.gif]

Thanks and more thanks DJ!

I showed up here in late 2000. My hits had been over for many years but I wondered how many others in the universe that had had to deal with it. I was stunned. I had no idea and meeting all of you was wonderful. I spent a decade reading and posting........I'm incapable of stopping as you know.

What a place you created Deej! START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Charlie

And we are all grateful you stuck around even though CH had ended for you MOC...this place would not be the same without you.  I mean that from the bottom of my heart too.   :)

Words can not describe what this place, and the people who I have met through it, means to me.  Those who are not around here, those that are, and those to come will all have a special place in my life. 

Thank you DJ!

Yep, I found it one day while trying to explain to a co-worker what Joe was going through. I sent the link to Joe and here we are.

Words can't express how finding this place made me realize - I'm not alone.  Thanks, DJ !

I am adding my thanks to every one elses here.

I may not be around so much due to Life the Universe and Everything.

But the people I mett here one the board and in person once upon a time ,long long a go in a far away place have changed my life .

I still pop in when I can and fill up

Many thanks to Dj and to you all

Thank you, DJ for creating a place that has changed countless lives for the better.

Beth :)

Awwwww, thank you all, and thank you Linda for starting this thread.  Your comments are humbling, to say the least.  It still brings tears to my eyes reading the stories you guys (and gals) tell when talking about this place.

I've said it many times before and I'll say it again...  YOU GUYS make this place what it is, I just provided the meeting place so THANK YOU for keeping this place alive.

HAPPY BIRTHDAY everyone!

DJ

Happy Birthday!!  My heartfelt gratitude goes out to DJ and everyone else who has been instrumental in the founding and continued success of this forum!! 

Although I didn't find this site until 2005, the O2 information I found here completely changed how the beast affects my life.........what drove me to 2 suicide attempts in early 98 is now just another of lifes trials and tribulations!!!

It is a great service that you have provided for the CH community DJ!!  Thank You!!

Dallas Denny

One thing I forgot to mention is that over the years whenever anyone thanked DJ or gave him an award, DJ would say..."I just started the site.  It was all of you who ran with the ball, researching and putting up the information, starting  OUCH, helping folks, etc.

Me thinks DJ is far too modest.  ;D

Whose DJ ??

Rally up, me hearties, we've a beast to slay.
Stand up, confront it, we'll hunt it each day.
Sharpen our spears, go for its heart,
Load now our guns to blow it apart,
United we'll fight it, for DJ has shown us the way.

I was alone, lonely, nowhere to turn.
Eye lit so brightly, face fit to burn.
No one to help me or tell me what's wrong,
Condemned to a hell with no way home,
But, thanks to Deej, I no longer stand on my own.

We're a team now, me hearties, people who know.
No longer powerless, we all know our foe.
True mates, too right, all in the same fight,
Aware of our plight, our strength is our might!
So thanks, Deej, we couldn't have done this alone.

That was awesome Brian.  Have a beer on me.   ;)

Thank you DJ and everyone here!!!

Linda_Howell wrote on Apr 11^th, 2010 at 12:03pm:

Me thinks DJ is far too modest.  ;D

FAR too modest.  And that modest wife of his doesn't help matters!  ;)

Mosaicwench wrote on Apr 11^th, 2010 at 8:02pm:

FAR too modest.  And that modest wife of his doesn't help matters!  ;)

I know, right? It's not [modest + modest]. It's more like modest^modest (modest to the power of modest).

Thank you, DJ and Steph.

DJ wrote on Apr 11^th, 2010 at 11:07am:

Awwwww, thank you all, and thank you Linda for starting this thread.  Your comments are humbling, to say the least.  It still brings tears to my eyes reading the stories you guys (and gals) tell when talking about this place. I've said it many times before and I'll say it again...  YOU GUYS make this place what it is, I just provided the meeting place so THANK YOU for keeping this place alive. HAPPY BIRTHDAY everyone! DJ

...as one who was "saved" by this forum, I can only add that I (and my family) owe you a debt, deej.
Not one you are comfortable receiving (I say this because I know how gracious you have always been when "we" thank you) and not a debt that can be put into words or dollars.

You give us room to find our particular space and you don't put many restrictions on how we deal with this fucking thief who steals our sleep and makes us so hard to live with. You DO give us a place to vent and spread information.

Thanks bro.. now STFU 

I'm here since 2003.

Big thanks to DJ, Mr. Happy, Batch and everyone from Hungary!

Educating Neurologists since 1998.

Keeping me sane since 2003.

Knowing I did not have to battle this thing alone made a big difference.

That, and having friends here who truly understand the unbelievable degree of pain of a cluster headache.

Thanks DJ.

Steve G

Been out of town since Thursday and just got back and saw this thread.

I found this site in the midst of my last cycle (2000) read the front and bawled like a baby......found the chat....found others like me......learned of a get together in Atlanta......went......and the rest is history for me. 

After 30 years of cycles the one I was in when I found this place has been my last.......but I will never leave this place.

Now we are going full circle (for me)and meeting again in Atlanta this year.

Thanks DJ for keeping this site throughout the years even thou you have been pain free as long as me.

You didn't have to do it. But you will be rewarded, and already have been for your big heart.

Simply......thanks.