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First time conference


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I just got back from the conference, and WOW! If you have never been to a conference I would put it right up there with oxygen on the priority list.

What an amazing healing experience. To meet other clusterheads, share our stories, and realize... others struggle with the same things I do, CH related or not.

We are of the same breed, and not only am I not alone, but I am also very much ok the way I am.

I am talking real people, real good people, just like me... a little crazy... but crazy strong.

Just the raw years of experience in one place was overwhelming.

The speakers... what can I say. You see just how hard we are working in advocacy, trying to raise awareness for research, education for doctors and service workers, the struggles entheogen is going through to get us the medicine we deserve... and you begin to really see the home that clusterheads have built for themselves. People say it is important to not let CH rule your life... ok I agree. But, my take on that is you can either suffer through the attacks and get completely free of anything CH for the PF times, or you can accept it for what it is, an integral part of your life, and treat it as such. Take it seriously, and spend time in remission learning more about it, learning how to help yourself better, learning what needs to be done for us all, and getting to work in some way because NO ONE ELSE IS GOING TO DO IT FOR US!

Ya, you will be trading some PF time for the cause (Your cause), and you will still suffer when things get bad. But now you will know that you are prepared, have done all you could to help yourself, and have a whole family who cares, accepts you for the person you are, and will do most anything to help you through it.

Things really happened there. People got love, lots of love, help with the medications they need, questions answered... some got to try oxygen for the first time, and get demonstrations on how to get set up and use the equipment. Farmers were giving lessons, and the atmosphere was rich with the exchange of knowledge.

OK... so was it fun? I don't know... we are a bunch of clusterheads... Hell yes it was fun! I don't know if I would have ever imagined laughing my ass off over stories of headbanging and turning into the incredible snot flinging hulk in front of someone at a business meeting... but when talking with other clusterheads where everyone knows the drill, it is damn hilarious. Best money I've spent in quite a while.

See you all in Chicago 2013!  8-)

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Thanks for sharing!  I've been wondering about the conference.  Definitely very curious and would love to have been able to attend.  Chicago isn't too far from my home so maybe next year!

Your post did give me something to think about though.  Sometimes I'm lucky enough to go 2 years between cycles.  When I'm out of cycle CH is the furthest thing from my mind.  I think I block it from my thoughts as a way of self preservation.  My CH episodes aren't as traumatic as they were before I discovered O2, but the fear is just as strong when that first one hits.  For someone in cycle, or for someone who is chronic, CH affects every aspect of our lives- our ability to parent, to work, to build our social relationships, maintain the activities we enjoy...  I just want it to be gone, even though I know it's only temporarily gone.  It certainly makes things more difficult when they come back.  If you intentionally forget, you have to relearn a lot and get up to speed again.  Then there is the guilt I always feel when I come back here and see what progress has been made by those who never left.  And I absorb all of that progress.  I read those testimonials of the people who have it so much worse than me.  But still, if this cycle ever ends... I may do the same thing again.

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Now that is a good post...wished I could have said it like that. I love posts like that.


DITTO-DITTO-DITTO...can you tell that i agree  :D :D :D

I was very impressed of what and how CLUSTERBUSTERS is doing for us...from the bottom of my heart,i thank each and everyone of you.....Lenny

BTW,i am convinced that Bejeeber can walk on water  :o :o :o

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Couldn't have said it better.  So thankful to all for making my first conference so informative and special.  Thanks to all who worked so hard to put it together.  After 2 1/2 years being chronic it was helpful to be with everyone.  Hoping for remission one of these days.  See you all next year.


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we may set the venue, arrange the speakers, set the agenda, etc.....but it's the attendees that make it a success and the friendships that are formed, that make what happens, last long past the end of the conference.

Much more to come but just wanted to share that and how we all feel that put these things together.


My biggest regret with them becoming larger each year is that I get to spend less time with everyone. My sincere apologies.

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There should never be any shame in disappearing when in remission... but you will miss the gratification from being a part of things here as well.Cool Its all good.

True, so true!

My CH episodes aren't as traumatic as they were before I discovered O2, but the fear is just as strong when that first one hits.

Siouz76, IMHO you explained it yourself as to why it's so understandably hard to stay connected.  Fear.  It's horrible.  In fact it's the biggest thief ever! 

I sometimes think this fear has worked in favor of the medical/science community.  Maybe it's subconscious on their part, but it's worked for years to keep us isolated from one another.  I don't think science could have helped us 50 years ago, or even 25 years ago.  I think science has only recently advanced enough to begin to dissect the complexities of cluster headaches!  Sensing this to be true has taken a large portion of my fear away.  In fact it's rather exciting!!!!

One day we'll do 24 hour fundraising walks toting our portable 'e' tanks around middle school tracks across the world!!! 

Just a 'screaming and a' huffing 02....together!!!! 


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My biggest regret with them becoming larger each year is that I get to spend less time with everyone. My sincere apologies.

As long as each person who attends takes away at least ONE thing that is informative and helpful, that's all that matters.

Sorry I missed it but am aiming for Chi Town. 8-)

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This was my 1st conference also.  I traveled 20 minutes by car and the drive was well worth it both days! ;)

I am very familiar with traditional treatments and am on clusterheadaches.com since 1999. 

However, before this conference I was completely ignorant on alternative treatments and never came to this website before.  I am glad to have been a part of this 2 day event.

Thank you for including me in the photos and I am very pleased to have reunited with many old and new CH'er friends and supporters. ;)

-Gregg in Las Vegas

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You were the first person I pm'ed on Clusterheadache site last year!!!! Glad to hear you made the conference and enjoyed it.

Funny, you referred me to this site in 2011. THANKS Dude, you saved my life by sending me here.

Hope you hang around. :) As the saying goes, 'You are good people in my book'.

all the best,


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Right-on Gregg!

It seems many are slow coming here because of the legal issues, drug policies at work, social stigma etc. When I first heard of busting my first instinct was to call BS...

However, I would challenge anyone to attend a conference and walk away with anything other than excitement over the treatment and where it is leading us.

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Hey Gregg,

Sorry you had to make that long drive to the convention ;D

It was good to meet you and I'm glad you made it to the convention.

Welcome to this site, hang around.

It was my third meeting and each one gets better. I hope to see you on the board and also hope to see you next year....it's a longer drive to Chicago  :)


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