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My first CB Conference (w/ pics)


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Well, it has taken me a couple days to digest all of it, and I still can't put it all into words.  I probably never will be able to.  If you have been to one, you know what I am talking about. 

I met my first fellow clusterhead .... and then I met soooo many more.  Meeting that first one is an experience I will NEVER forget.  I've been chronic for 3 years now, and this is the first time I have felt "normal" since before my first attack.  The love and support is impossible to put into words.  I sat with people and had long, meaningful, in-depth conversations ...... and we never spoke a word.  Looking into the eyes of another clusterhead is one of the most amazing things I have ever done.  No words are needed, we just "know".  Looking at another clusterhead is like looking into a mirror.  We are all alike.  We are all the same.  I feel like I have known each and every person at the conference for years and years and years.  It was like a family reunion.

I saw someone have an attack in person for the first time.  I helped someone use o2 for their first time.  I taught someone how to extend trex shots.

My family grew exponentially over the weekend.  My phone is FULL of numbers of people who love and care for me.  People who really truly understand.  I am no longer alone in this. 

I laughed harder than I have laughed in 3 years.  I cried harder than I have cried in 3 years.  I played harder than I have played in 3 years :)

I have never EVER given or received more hugs in a 3 day period in my entire life.  Hand shakes are unheard of .... we hug it out.  The closest thing I can relate it to is an old hippie commune of the 60'-70's.  Everyone getting along for the good of all.  What's mine is yours and what's yours is mine. 

On Sunday I dropped the daughter of a fellow sufferer off at the airport and headed for home.  It was a 4 hour drive for me.  I made it about 20 miles out of Chicago and had to pull over and cry for a little while.  It was THAT meaningful.

I met CHfather.  As soon as we realized who each other was, you guessed it, a big ass hug ensued.


I met the weatherman.  We chatted for a few minutes, but regretfully I didn't get a picture.  My mind was in such a whirlwind that I often forgot to pull the camera out and for that I am disappointed in myself.

On the day that I was diagnosed, 3 years ago, I heard the words "cluster headache" for the very first time.  I raced home and sat in front of the computer for the next 12 hours reading everything I could find.  That was the day I found this message board, and the day I made my first post here.  My introduction post must have stirred something in "Clustermom" because withing minutes of posting, she messaged me with her phone number.  I felt pretty odd about that actually ..... a total stranger giving me her number like that.  Later that night I was feeling pretty depressed after reading all the horrible shit that goes along with CH so I picked up the phone and called her.  We chatted for a good while.  That was the first "human interaction" with anyone familiar with CH.  We stayed in contact those first few months, but then I went through a real bad time and we fell out of contact as I abandoned this board for almost a year.  When I did finally find my way back on the board, one of the first things I saw was a thread started by her titled "where's b.g.".  That touched me.  Anyways, to make this already long story a little shorter .... on the very first morning of the conference we passed around the microphone and introduced ourselves.  It was then that I saw her in person for the first time.  Poor lady never saw it coming.  I walked up to her with tears coming out of my eyes and she immediately stuck her arms out and hugged me.  We held each other for a good while and then she pushed away and said "who are you"  :)  Now fully crying and all choked up, I barely mumbled "I'm b.g." ....... and then we of course hugged again.

This is a REAL BAD time of year for me as I am switching from low to high cycle, so I unfortunately missed some of the speakers/events while sitting in my dark hotel room hugging an o2 tank, but what I did see was all pretty amazing.  If you have any questions, feel free to ask and I will do my best to answer. 

I could go on and on and on and on ....... but here's some pics for those of you who didn't make it:




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B.G. What a heartfelt warm story.

I really enjoyed reading that. And the pics too are great. Beautiful people.

Personally I think I would be just as overwhelmed.

I only ever met one former CHr who was episodic and they disappeared on him 10 yrs ago. When he met me. He saw the horror in my eyes and said nothing but OMG I feel so sorry for you.

I have only heard of 2 others in my city of 350,000 people. One who is 100% recluse(wouldnt even meet me in fear of having an attack) and the other a wealth former businessman who retired early. He wont meet me either.

It takes a strong willed person as yourself and others to attend an event.

Makes me smile to know that all of you bonded, shared and learned from one another.

I doubt Ill ever be able to come because of disability and the expence but glad I can come here to read about it.

Thank you so much for sharing....

My wifes recovery is the same...they HUG. When I first went to a few meetings with her in NA, I thought...hey dude I dont even know you...and they hugged me. But now...I get it...Hugs Not Drugs.

So I am sending a virtual hug my way to everyone.


thanks for sharing and keep the stories and pics coming.

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Thanks b.g.!

Man it's great to see the photos (but NOT great to know you were having to hit the O2 tank).

This group shot that appears to be an "everyone hug Bob!" event is FANTASTIC - what a moment in time captured - and I think it should seriously be considered for prominent display front and center right on the CB home page:


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I won't miss another one. I have been absent from this board for a while. I hope you all understand....BUT IM BACK

I hope all of my buddies are doing well. I have been on the cluster headache FB site some. Damn there are A LOT of "Us" out there.

Best pF wishes to all, especially CHF and Jeebers

I've missed all ofyou!


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Thanks b.g.!

Man it's great to see the photos (but NOT great to know you were having to hit the O2 tank).

This group shot that appears to be an "everyone hug Bob!" event is FANTASTIC - what a moment in time captured - and I think it should seriously be considered for prominent display front and center right on the CB home page:


Forgive me Mr.Jeebs...That particular photo can be a bit deceiving...From what i have been told,that lovely young lady in the purple top which looks as if she is hugging Bob (actually-its Bob hugging her)...just won the raffle...she gets to bring 1 other lucky individual to have lunch with Potter @ next years convention...hope that clears things up a bit...  :D :D :D :D :D

On a serious note...that is a great photo...thank you B.G. for the photos...i bet that 4-hour drive must of seemed like 15 minutes or so...thanks again for sharing...hope to meet you next year.....Lenny

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Two full days of the best comfort-people experience in the world.

It's like getting your soul revitalized and mind energized.  Total overload with renewed information and support from a community of genuine human beings who really care.  Amazing how the true spirit of helping your fellow sufferer comes across even more than the website chats (if that's possible).  It's as real and genuine as it gets.

Clusterheads might be the most blessed and most tortured people on the planet.

Thanks b.g. for the great photos, wish I'd taken more too.

Looking forward to Nashville already  :D


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My family grew exponentially over the weekend.My phone is FULL of numbers of people who love and care for me.People who really truly understand.I am no longer alone in this.

So true.

I found myself thinking about all the "firsts" on my return flight and welled up like a big ole baby, and just knew the guy seated next to me was going to start "trying to help".... I tried really hard to turn and ignore but it's practically impossible squished between this guy and the window person.  He amazed me and said, "I think those are happy tears, am I right?"  OMG.

BG, thank you.  You've nailed the experience for me and the hundred or so others who made it to the bestest of the best CB conference ever...and the guy on the plane?  Well, he wasn't quite the cherry on top of the sundae but damn, I did bust out in a real boo hoo session at that moment too!

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Thanks for the kind words everyone!  So good to see you back again Big Dan!!  And so good to meet you Lee and Cindy.  Yes, we are a pretty sexy bunch :)

I'm also looking forward to Nashville so much.

I'm still high off of Chicago and this is a feeling I MUST have year after year.  I'll Never miss another one.  Hoping to see many of you in Washington as well.  It will will my first Headache on the Hill campaign, and much like the conference, once I hit one, I'll probably never miss another.

I also wanted to say my piece on the BOL-148 update for those who missed the conference.  I was very much looking forward to the update, and very disappointed afterwards.  Yes, it does sound promising, but the fact of the matter is that it has sounded promising for well over a year now :(

Although sad, it does make perfect sense though.  It's all about money. Money, money, money.  Basically, pharma is greedy (as if we didnt already know that).  To paraphrase the information that was given at the conference, these pharma companies want to spend 25 million dollars and get a 2 billion dollar return on their investment.  Well, the facts are that not every drug in the world is going to be as profitable as viagra, and basically spending a shit-ton of cash to produce a deritive of LSD that can only be marketed to such a small number of people just doesnt make good business sense.

On the plus side of things, I have personally seen HUGE strides in awareness over the past couple of years and I feel very confident that our train is barreling ahead at full steam with no plans to slow down any time soon.  Awareness = money and money = BOL.  Sad formula, but it is what it is.

Thank you for the kind words HeadacheRelief.  You know you are a Goddess and a hero.  :)

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