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Portland Conference, a life changing experience


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After 7 years with episodic clusters and nothing more than a prescription for Imitrex, I finally have some hope.  Up 'till this past Friday evening, I had never met another Cluster sufferer, and now I feel like a member of one of the most supportive families that I could imagine.

Just like the diversity of our cluster community(and that of Portland itself), I'm so struck by the range of experience that the conference provided.  On one hand, there's the wealth of information by the extremely knowledgeable doctors that presented. Previously, I hardly understood what was biologically going on with me, but now I feel like I just completed a medical school course on the subject.  And on the other hand,  the outpouring of emotion... compassion, sympathy, optimism, brother/sisterhood is still choking me up as I write this.  There just aren't words to describe how much this has meant to me.

It's taken me about 6 weeks to finally type up this first post.  Partially because I was in the throws of my annual July episode, but also because of negative experiences on other forums.  Let me say that if anyone is apprehensive about speaking about what they're going through like I was..... Don't Be!  The folks that make up this community are open minded, intelligent and compassionate people that welcomed this newbie with arms open.  And if your style is a little more on the private or 1-on-1 side,  send a p.m. or come to the next conference like I did. 

I'd like to thank everyone again personally by name right now, but that'll take quite a while and ya'll know who you are.  But seriously....THANK YOU for the truly life changing experience!!!


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Hi Daniel,

Welcome. Good to have you here. Lots to read - check out ClusterBuster Files. Ask questions. Sometimes it takes awhile to get an answer, so be patient. Glad you enjoyed the conference. We couldn't make it. Maybe next year. When you get the chance, would you please provide us with a little more of your background.

My name's Ron. I'm the caregiver for my son, Michael. He's chronic but has had a lot of success with the psychedelics. He's 23 and just recently joined the forum himself.


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Hey fellow New Yorker!  Glad you got to enjoy the conference, wish I had could have made it.  I keep promising myself that I am going to make one of them.  Need to get serious about that, I finally met a fellow sufferer and it was as if we had known each other for a lifetime.  Welcome home!

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Hi Lee Ann!  Tell Dan the Coors is on me when next we meet(hopefully soon)!

Thanks for the warm welcome to all the folks I haven't met personally here yet.

Birdman-  I felt the same way about meeting everyone, it was like we had already known each other for ages, what a rare feeling.  I spent years living on the other side of the Harbor from you in Brooklyn.

David- We're literally neighbors!  I'm in Hopewell near Shenandoah.

I'm sensing a New York mini get-together soon!

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Hey Daniel - I work in Brooklyn and live on SI.If you have any get together ideas, definetely let me know.Pain free wishes to all!!! 

So for sure we have Daniel and I minutes apart, birdman (who I got to go to a ball game with) an 1 and 1/2 hours away and AO up in the boonies of Buffalo area. Now we just have to figure out a place to meet. If the Georgia and Texas people can do it, why can't the New Yorkers make it happen. :)

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There just aren't words Eddie, or is it "there just isn't words".  How about both.... x 1,000,000.

I kinda think of you as my Obi Wan Kenobi in the fight against ClusterVader.  My only hope is that I can pass on some of the support and love that you so generously showed me.

Maybe at some point soon we should start a thread specifically for a New York/New England meet.  Maybe make it a little easier for some folks to hear about it without having to just happen upon these specific posts?

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If the Georgia and Texas people can do it, why can't the New Yorkers make it happen

And Oregon (folks too) LOL

O what a wonderful feeling, O what a wonderful day!

I just have so much happiness in my heart today!  Meeting all of you wonderful (fellow sufferers) and equally wonderful supporters was like being in Disneyland with only your friends, free for all!!!

Eddy, I still laugh and cry so hard thinking of the speech you gave.  My husband has a new understanding of our disorder and he really appreciated your candor.  Of course Dan and Le Ann's speech was also enrapturing being equally sad (pre-cluster busters) and hopeful!

So happy to have met SherrienAZ, Mastiflover, Galwin, Fungi, Darrel, and on and on!

What a happy birthday I had!!!!!

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