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ClusterHeadSurvivor

For us that can not be there in Chicago

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Hi, I am sure I can speak for most who like myself are unable to go to Chicago.

Let me say I am and others are there in spirit and support.

Hope there is some way people make videos,upload them to YouTube and link to here for us that can not make it.

As I have said before. I do not bust but support others in their fight to stay pain free. I think Bob Wold and many others truly need a high five, pat on the back and a hug for so many.

I wish all of you a safe and painfree conference.

If there is shirts avail or souveniers. Ill take a double XXL. or anything. PM me.

Please accept my blessings and support for the cause.

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Sorry I also won't make it...

I would like transcripts or video of any presentations, especially BHD. BOL is still a long way off I realize. But I am consumed by the phenomenon I refer to as CTSD. Take PTSD which is centralized on an single traumatic event, translate that to the 38 years of tourture I have in my Bag O' Crap, that is on going, and treat that! Like walking into the Hanoi Hilton and telling the prisoners "We can't get you out of here... but we would like to try and treat you for your PTSD, have some drugs! :-[

Edit: I had a neuro try to cheer me up by implying that many patients out grow their clusters... Saying "I have old patients, and I have patients with clusters, but I don't have any old cluster patients". My reply was "Is that because they are all dead?". He was not amused.

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I will be sure to post a ton of pics here after I return :)

For those twitter people, you can stay up to date with us in real time:  Follow @Cluster_buster and use these hashtags, [ch8234]#[ch8206]Clusterbuster[ch8236] [ch8234]#[ch8206]CBinChi[ch8236]

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Hope there is some way people make videos

Right?!?  Somebody get McGeeney on video talking about the benefits of hallucinogens for clusters!  (probably want to make sure he knows it's gonna end up on the web though :) )

-Ricardo

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National Geographic did a bit on TV about it...nothing happened.

I think a lot of people would disagree on that.  Quite a few people got clued in to the idea that these drugs are alleviating Clusters for months at a time for some folks.  I'm sure there is no real way to say for sure how many people watched that Nat. Geo. episode but I would bet that it got the term "cluster headache" into a hell of a lot of peoples heads that had never heard of it before.  With them doing it in an entertaining video about hallucinogens makes it so that people actually pay attention.  Unfortunately, not many people want to just sit around and listen to facts about horribly painful diseases.  Probably just not the kinda thing you sit down and relax to.  Make it a slick video like they did and add in the controversial "illegal drugs" aspect and I bet we got quite a few people interested.  To me, this is one more aspect of how the hallucinogens can help raise awareness of clusters.  It's interesting.  People will sit and listen to me talk about crazy psychedelic drugs and the impact they have on the brain, especially clusters and migraines for hours....I start talking about verapamil, Vitamin D, or brain surgery and people don't want to listen much.  Maybe it sucks that people are not interested for the sake off being interested and learning about people with our condition, but I'll take whatever works. 

As far as getting McGeeney talking about clusters and hallucinogens in a video, it is a completely different animal than the NG episode.  This is a respected Boston University Neurologist who can talk about the science behind what is going on and the positive ways he has has seen it impact his patients lives.  That's gotta be worth something.  Hell, it'd be great to have just for us and our site--that'd be a nice easy thing to send to a Doc who is not on board with busting to get them a little more at ease with busting.

-Ricardo

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I was a Chicagoan before I moved to Sin City 21 years ago and certainly would love to be there right now.

It was fabulous to meet all you CH'ers last year here in Las Vegas.  Unfortunately I will not be attending this year's conference as I have responsibilities as a single parent to my son.

Hope everybody has a safe, fun and pain free time together! ;)

-Gregg in Las Vegas

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the person in the video did not go to jail...that is what I meant and perceived in my discussion. 

ah...now I get what you were saying :) 

Still always good to remind people that are getting video taped that it's not for a personal collection, but the internet. 

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As a patient of Dr. McGeeny I would have loved to have been there to talk to everybody about my treatments. I would also like to be able to get a video of his talk to be able to see other things that I am sure we have not had time to go into in our office visits. Please feel free to PM me with any questions or contact me on Facebook. I am there a lot more then here. I love all of the support we have from each other now. PFW

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