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Title: We had a meeting..... Post by LasVegas on Oct 29th, 2003, 12:43pm It was so good to meet five other Cluster Sufferers last night at our first "Cluster Sufferer" Las Vegas meeting. We all introduced ourselves, discussed preventative and abortive meds, local doctors, discussion of hypothalymus gland and trigeminal nerve, triggers, potentially forming a local chapter of OUCH, exchanged phone numbers, a demo of the "Imitrex Tip", etc. Met for 2 and a half hours. All six of us were male, four out of six are smokers, we all are overthinkers, we all are left sided sufferers, ages ranged from 32 to 56, five of us are episodic, one was chronic, we all have health insurance or VA medical assistance, two of the six are Vietnam Veterans, three of us are self employed, one service-related disabled and two are full time employees, two reported deviated septums on the left (Cluster) side-one of these two men had it fixed but did not cure CH's, one had a brain tumor removed-but did not cure CH's, one with history of two closed head injuries. Of the six of us, one has been PF for 4 days, one is chronic with an average of 1 or 2 daily, the other four haven't experienced a CH in 2, 3 and respectively 4 years. Reported initial onset of CH's began at age 11, 16, 24, 30 and mid-20's, mid-30s. Very productive first meeting with all of us understanding that we now have local contacts and are not alone. Gregg in Las Vegas |
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Title: Re: We had a meeting..... Post by taraann on Oct 29th, 2003, 12:52pm This would be great article material for Donna's newletter.........................right Donna?!?!?!? |
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Title: Re: We had a meeting..... Post by Melissa on Oct 29th, 2003, 12:56pm Greg, that is wonderful you were all able to get together!! Looks like you learned quite a lot about each other, and I'm sure you all will keep in touch. I hope to hear more about the possibilty of organizing an OUCH Chapter for Nevada. If and when you all have made a decision on starting one, please let us know on the OUCH site! Sounds like it was a GREAT meeting!!! :)mel |
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Title: Re: We had a meeting..... Post by BarbaraD on Oct 29th, 2003, 12:56pm Gee, sorry to hear you had NOTHING to talk about... hate it when that happens.... Hugs BD |
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Title: Re: We had a meeting..... Post by 9erfan on Oct 29th, 2003, 1:03pm Gregg, Sounds like a great meeting. Who all was in attendance? Isn't is great to meet others from the family? V |
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Title: Re: We had a meeting..... Post by OneEyeBlind on Oct 29th, 2003, 1:30pm Ahhhhhhhhh, and another group forms. Don't ya just love meeting those fellow sufferers ? Sounds like you had quite the experience. Nevada is rocking and they ain't doing it alone. :D |
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Title: Re: We had a meeting..... Post by Tiannia on Oct 29th, 2003, 2:29pm Sorry I could not come. :( :'( I did not get out of my meeting until almost 10pm. Hopefully the next gathering here in Vegas I can be a part of. But I am glad that it was successful and informative. Tia |
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Title: Re: We had a meeting..... Post by Donna_D. on Oct 29th, 2003, 3:03pm Greg, this would be great for newsletter...I will e mail you with details. Donna D p.s. Thanks for the heads-up Tara Ann! |
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Title: Re: We had a meeting..... Post by LasVegas on Oct 29th, 2003, 3:17pm Yes, it truly was great meeting others. This site was thanked last night as the source of us all meeting and a special thanks goes out to DJ. What's this about a newsletter? Have been in touch w/ Bob at OUCH and am sure we will work something out for a Las Vegas or Southern Nevada chapter in the near future. I've emailed everybody in Southern Nevada at least 5 times in the past two weeks to try and coordinate this meeting and many are interested, but were not able to attend last night. As for who attended, as a matter of respect and privacy, am not saying. However, I did email them all a link to this thread a few hours ago and requested their input/reply on last night's meeting to be posted here. We'll see who writes. This thread should be of encouragement to others to organize local meetings, it really was comforting knowing I wasn't so alone afterall. My fiance was the only supporter along with the six of us CH sufferers who was able to make it. I highly encourage and included in my invite for any/all supporters and medical professionals to attend and participate in discussion. Gregg in Las Vegas |
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Title: Re: We had a meeting..... Post by Hai on Oct 29th, 2003, 3:32pm Greg is a great guy. I want to give him major props for taking steps to start this group up. Yes, we just ended up standing on the ramp leading up to a library entrance. YES, we did not do any lectures, or large demonstrations. The main purpose of the first meeting was for all of us to just sit around and bullshit with each other. Exchange horror stories, theropies, meds we use, and other general chit chat. BOY WAS THAT A COMFORT! I lived near the meeting place, so I decided to walk home. It was a good walk, because I was able to reflect on the meeting and was actually laughing to myself at some of the stories that were told that resembled my own personal expieriences (especially the one Greg told about sitting in the back yard trying to light a ciggarette during a CH). I am very bad with names, and I did not get a chance to grab anyones number except for Greg. I sure hope to see you guys and those who missed the meet here in vegas at next months dealio. There was one of you there I am very interested in, see if this quote helps "GET A NEW DOCTOR". Please please please, I could not get over the fact how you suffer and the suck ass treatment your on (excuse the french). Thats all from me. Larry :P |
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Title: Re: We had a meeting..... Post by LasVegas on Oct 29th, 2003, 4:02pm Larry, Glad you got something out of last night's meeting. Emailed you everybody's name and # who showed last night and they all have yours too. Lets get your wife at the next meeting to BS with other supporters. Thanks again for the "Imitrex Tip" demonstration. Stay in contact. Gregg |
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Title: Re: We had a meeting..... Post by BobG on Oct 30th, 2003, 6:17am I was there. Thanks Gregg. Good thing the meet wasn't last night, With all the smoke from the Califonia fires chocking the valley it was hard to breath. The air was so un-healthy that I couldn’t even step out on the patio to enjoy a cigarette. |
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Title: Re: We had a meeting..... Post by Tiannia on Oct 30th, 2003, 1:45pm on 10/30/03 at 06:17:43, BobG wrote:
Now that is the way to enjoy the fresh air. Tia |
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Title: Re: We had a meeting..... Post by LasVegas on Nov 1st, 2003, 10:41pm FYI, there were six of us, only three of us posted. Speak up you three, wat did you think ogf the meeting? Productive, waste of time, what?... Gregg |
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Title: Re: We had a meeting..... Post by nancyc on Nov 2nd, 2003, 3:15am This is so exciting...we are getting ready to have a cluster meet here in SC next weekend...I am so happy for you guys there...I truly hope ours goes as well as yours did...It is an awesome experience to meet other clusterheads and share what you have gone thru and realize that you are not ALONE...thanks for letting us know what happened....great story for the newsletter! :)nancyc |
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