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Topic: NYC ClusterHeads (Read 2172 times) |
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t_h_b
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NYC ClusterHeads
« on: Feb 10th, 2004, 6:46pm » |
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Anyone interested in getting together just to meet other people with clusters?
There should be about 8,000 ClusterHeads in NYC at the rate of 1 per 1000, plus others in the metropolitan area. Surely there are three or four others who would like to meet another ClusterHead.
Please post here or private message me.
Thomas
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| « Last Edit: Feb 12th, 2004, 5:51pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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EL
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Re: NYC ClusterHeads
« Reply #1 on: Feb 29th, 2004, 8:43pm » |
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hey ya thomas, has anyone in nyc contacted you about this? I was interseted if some clusterheads was meet up once in a blue... i think its a great idea and since nyc has so many people im sure we are not the only ones.. For anyone else out there in NYC lets see some support.. 
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TxBasslady
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Re: NYC ClusterHeads
« Reply #2 on: Mar 1st, 2004, 2:32am » |
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I'm not in NY.....but just wanted to say.....keep this thread going !!!!!!
You will NEVER experience anything better than meeting a brother or sister CH sufferer or supporter.
This board brings people together from all over the world. Friendships that will last a lifetime are right here.
Good luck to you THB......keep up the good work, sweetie. This is a great start for the thrill of a lifetime!
Best wishes to you.....
PF vibes,
Jean
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Peppermint
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Re: NYC ClusterHeads
« Reply #3 on: Mar 1st, 2004, 4:07pm » |
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***'scuse me, oops, pardon me, ow, sorry***
HI.
Just wanted to lend you a little help with some names of people in NYC who might want to get in on this:
suzy617
kim
justin
cbolony
Hmmm... I know there are more.. just have a bad memory, or I don't know 'em well.
So, this is a little push. You all know this is a good thing. C'mon and get busy.
Pep
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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EL
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Re: NYC ClusterHeads
« Reply #4 on: Mar 1st, 2004, 5:40pm » |
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Thanx Peppermint..I would hope some of us can get together sometime. Im pretty new to this and Im sure there are some veterans that can help a newbie like myself and others out there.
SO TO ALL THE NYC CLUSTERSHEADS "LETS JOIN FORCES AND WHIP THE BEASTS ASS!" 
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t_h_b
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Re: NYC ClusterHeads
« Reply #5 on: Mar 2nd, 2004, 11:15pm » |
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EL, this site is the only place I have ever encountered another ClusterHead. It was such a sense of relief--a very emotional moment--when I first found it.
I wanted to go to the convention this year and last year but couldn't work it out.
We should definitely get a group together and if we can't come up with any other ClusterHeads we could start with just the two of us.
If there's no one else here out of the potential 8,000, maybe when the NJ/PA group meets we could hop a train.
Also, if we do start a group for occasional get togethers I will see if my neuro would let some other ClusterHeads know about it.
Don't think I've run into any of the posters Pep mentioned but I'll be on the lookout. And thanks for your encouragement, Jean. It really would mean a lot to me just to meet someone else in person who understands this. (No one but a ClusterHead could even understand that only a ClusterHead could understand.)
EL, let's keep this going as Jean suggested and we should eventually pick up a couple of other locals.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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TxBasslady
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Re: NYC ClusterHeads
« Reply #6 on: Mar 2nd, 2004, 11:41pm » |
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t_h_b
If you and El don't get any hits on your post....you 2 get together by all means.
Get with Randy (Mr. Happy) or Ozzman....they head up the pa-nj chapter. They would be more than happy to have you guys meet up with them.
Keep up the good work!!! 
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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EL
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Re: NYC ClusterHeads
« Reply #7 on: Mar 3rd, 2004, 10:44am » |
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Hey THB , sounds great.. I hope this post being on the t op of the list will have some other nyc lurkers to come forward and get together with others. I wouldnt mind taking a bus down to the nj group if the day is right. Also I wanted to ask you for a recommendation of a good neuro that deals with clusters in the nyc area. Any help would do..
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t_h_b
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Re: NYC ClusterHeads
« Reply #8 on: Mar 3rd, 2004, 6:57pm » |
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Jean, ideally we should eventually be able to form a NYC or NY OUCH chapter. I'm thinking ten or twelve people would be sufficient.
EL, I PM'd you about the neuro.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Peppermint
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Re: NYC ClusterHeads
« Reply #9 on: Mar 3rd, 2004, 11:06pm » |
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Hey people.
Ok, I can get in touch with Kim and Suzy for sure. I'll give them the 411 and point them in your direction.
So far, Suzy and I made the trip out to PA-NJ. Since NY is still small on participation (maybe now not for long  ), you guys might just gather together for the next trip out to meet with the PA-NJ'ers. Atlantic City was interesting.
Suzy and I drove over last time. If that happens again, you might not have to only hop the local MTA for the trip out, depending where you are in the city.
Randy and Ozz are the ones to contact as Jean said. They can add you to the email listing and notify when the next meeting comes up. At the very least, you'll get some info on starting a chapter, at best, you'll meet other Ch'ers and well, get something happening here.
Looks good all 'round.
Pep 
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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EL
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NYC in the hisssouse!!!
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Re: NYC ClusterHeads
« Reply #10 on: Mar 5th, 2004, 11:26am » |
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Hey all again. Wanted to see if I can get a head count of all the nyers out there.. Maybe even a brief "get to know you".. Want to know more about my neighbors and what they are going threw.(whos in cycle, whos not,etc)
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t_h_b
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Re: NYC ClusterHeads
« Reply #11 on: Mar 5th, 2004, 6:54pm » |
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EL, I'm chronic, so I'm ALWAYS in cycle, always always always, but I've got them under control, at least for the time being. CH is sneaky so you can only be sure of the past and present and I never try to predict the future with CH.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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suzy617
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Re: NYC ClusterHeads
« Reply #12 on: Mar 6th, 2004, 1:00pm » |
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Ok I'm a New Yorker. Staten Island. I'd be interested in a get together for sure. Also like Pep said, you might want to hop a ride for the next NJ/PA meeting.
Yes Pep, AC was fun too.
Suzy
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t_h_b
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Re: NYC ClusterHeads
« Reply #13 on: Mar 7th, 2004, 10:07am » |
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Suzy, that makes three of us--that would constitute a gathering.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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justin
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Re: NYC ClusterHeads
« Reply #14 on: Mar 7th, 2004, 1:26pm » |
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hey all,
i'm down to meet up anytime anywhere. as some of you may know i am working on a documentary about people with clusterheadaches. i will be posting today in the general section more about the documentary. but i would love to meet some of you and talk about your experiences. if anyone is willing to talk on camera after that we could arrange something. but mostly it would be great to talk face to face. if you'd like me to arrange a meeting i could do that. email me at justin.ott@verizon.net. i'll put a message together with a compilation of everyones email and we can start suggesting times and places. be well and pain free all!
j
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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EL
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Re: NYC ClusterHeads
« Reply #15 on: Mar 8th, 2004, 1:08pm » |
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Hey There Justin, Sounds like a great idea.. Its good to have someone trying to educate the world on our lovely affiction.. You can count me in to any meeting and Im sure the people above wouoldnt mind either. Im still trying to get a consensus of all the NYC heads on the site. Thats the reason for the thread.I hope all of us will come out of the shadows.
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t_h_b
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Re: NYC ClusterHeads
« Reply #16 on: Mar 8th, 2004, 6:58pm » |
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on Mar 8th, 2004, 1:08pm, EL wrote:| Hey There Justin, Sounds like a great idea.. Its good to have someone trying to educate the world on our lovely affiction.. You can count me in to any meeting and Im sure the people above wouoldnt mind either. Im still trying to get a consensus of all the NYC heads on the site. Thats the reason for the thread.I hope all of us will come out of the shadows. |
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Ditto.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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suzy617
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Re: NYC ClusterHeads
« Reply #17 on: Mar 10th, 2004, 7:13am » |
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Just a thought but you might want to start a thread about this on the general discussion board. I think alot more people will see it over there.
C'mon New Yorkers...speak up...
Suzy
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justin
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Re: NYC ClusterHeads
« Reply #18 on: Mar 10th, 2004, 11:40am » |
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ok, i'm moving this disucussion over the general board under the same subject.
j
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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justin
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Re: NYC ClusterHeads
« Reply #19 on: Apr 2nd, 2004, 10:06am » |
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hey all nyc clusterheads
keep emailing me so i can put a group email together. then we can all agree on a time and place to meet up in NYC. hopefully end of april or beginning of May.
Justin
jdo201@yahoo.com
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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bang_my_head
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Re: NYC ClusterHeads
« Reply #20 on: Jun 14th, 2004, 10:19pm » |
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Hello it's nice to know im not the only one
in n.y. that lives whith ch.I'm in a bad cycle now
I hate it "scared of losing my job. gonna try prednisone again
still moving
Long island ny
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E-Double
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Re: NYC ClusterHeads
« Reply #21 on: Jun 26th, 2004, 11:31am » |
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Name the time and place!
E
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dave_in_nj
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Re: NYC ClusterHeads
« Reply #22 on: Jul 13th, 2004, 8:48pm » |
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Sounds great...count me in. I work in midtown and live in NJ. I'm in the middle of a realy shitty cluster so bring your O2 tanks...
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Anybody got a spare hypothalamus?
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kimh
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Re: NYC ClusterHeads
« Reply #23 on: Jul 25th, 2004, 9:22am » |
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Checkin in from Centerport, Long Island. Sorry took so long to respond to this - was out of town, just getting caught up here. Count me in!
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Charlie M
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Re: NYC ClusterHeads
« Reply #24 on: Aug 2nd, 2004, 11:58am » |
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I'm very intrested in any meeting. I live on long island Merrick to be exact. hope to meet soon
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