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        New Message Board Archives >> 2003 Posts >> Tell me!!!!
        
(Message started by: jonny on Aug 24^th, 2003, 5:32pm)

Title: Tell me!!!!
Post by jonny on Aug 24^th, 2003, 5:32pm

How many of you have met another clusterhead or supporter?

This is key folks!!

If you havent met one Ill let the folks that have clue you in.

Talk to me....................;D

.........................................jonny

Title: Re: Tell me!!!!
Post by Hooter on Aug 24^th, 2003, 5:37pm

Lots but they were all British (apart from Riccardo)

I want to meet a real live American one now!

Love

W the B

P.S. Where is Riccardo? Is it the Rome convention week at the moment?

Title: Re: Tell me!!!!
Post by stevegeebe on Aug 24^th, 2003, 6:03pm

Jonny,

Only two.

One has been PF for several years and the other checked out (for good).

Nick, the one I can still talk to, has helped explain CH to some of the people at my office.

Steve G

Title: Re: Tell me!!!!
Post by Big_Dan on Aug 24^th, 2003, 6:13pm

... two...

Jim (JDM) and Mark (? Bad with names, Echo)...

... both times, I felt like I was seeing a long lost brother. Its nice to know there is an actual physical being that knows what its like to deal with Satan himself....

.. oh.. and I spoke on the phone with Leesa... supporter. Hell of a gal too... (thought *I* had a southern draw.. ;D)

-Big Dan

Title: Re: Tell me!!!!
Post by OneEyeBlind on Aug 24^th, 2003, 6:22pm

Met with Jill about a year ago when I helped her out.

Met Opus/Paul in the spring. His sister actually lives quite close to me !!! Small world.

Then this past week spent a glorious time with Fenny/Cathy from England, CathiP from Oregon, Kim from Long Island, CLR /Cindra from Oklahoma, Opus from NY State and Pep from Queens. It was a life changing expererience. Missed Suzie617 on that trip ........ maybe next time !!!

I will get down to meet LiveForFun who only lives about 1/2 hour away from me. Just hasn't worked out yet. Also have plans on joining the next Reading meeting to hook up with those guys !!!!!!!! Jonny I'm sure I'll meet you one of these days. Can never meet enough clusterbuds !!!!!

Title: Re: Tell me!!!!
Post by cootie on Aug 24^th, 2003, 6:27pm

I fineally met a awesome bunch at the NY convention.....I fell in love with em all......then got the convention blues.....then.....shit hit the fan on here and I am very disappointed.......there ALL good people !!! Pam that really had a great time in NY

Title: Re: Tell me!!!!
Post by Leesa on Aug 24^th, 2003, 6:35pm

Well lets see here......... Yall I can tell ya this if ya aint met a Ch'er ya gotta!!! It's the BEST!!! I've met Jonny (and gawd what a tall drink of water he is!! ;) ;D) Met Elaine (grand lady she is) JudyW, BarbG, Den, Georgia, NancyC, Riccardo, Ueli, BobP (aka Boob) "da man" DJ, Jayne, and soooooooooo many others in HOT lanta! I ever got mooned in HOT lanta. (Hey Jonny nice ass bro! ;)) If yall get the chance to meet a Cluster bud DO IT!!!! Its time well spent a time you will NEVER forget!!
And Big Dan you do have a southern draw hun! ;)
Gotta love da family Leesa

PS check out the convention pics and yall will see what I mean. HOT lanta will NEVER be the same!!! ;)

Title: Re: Tell me!!!!
Post by Kirk on Aug 24^th, 2003, 6:46pm

2 in person. One on the phone

TTFN

Title: Re: Tell me!!!!
Post by cathy on Aug 24^th, 2003, 6:48pm

on 08/24/03 at 18:22:17, OneEyeBlind wrote:

Then this past week spent a glorious time with Fenny/Cathy from England ;D thats me...lol, CathiP from Oregon, Kim from Long Island, CLR /Cindra from Oklahoma, Opus from NY State and Pep from Queens. It was a life changing expererience. Missed Suzie617 on that trip ........ maybe next time !!!

Ditto to Nans post..... also met Opus/Paul and Nancy... and have yet to meet, 9erfan, Linda Howell, and Jonny

Cathy

Title: Re: Tell me!!!!
Post by cootie on Aug 24^th, 2003, 6:58pm

Cathy.....start collectin yer beer tabs now fer the first time ya meet jonny.....he collects em and esp likes em down his pants. Pam that witness'd jonny gettin tab'd

Title: Re: Tell me!!!!
Post by Linda T on Aug 24^th, 2003, 7:03pm

Jonny,

Almost met a couple of clusterheads last week (hi Kim and all the rest). Spoke with Kim on the phone on several occasions but that's it.

My loss. LInda T

Title: Re: Tell me!!!!
Post by Charlie on Aug 24^th, 2003, 7:03pm

Yeah...Finally. Spent lots of time getting and getting to know not enough of them. Strange thing is that for the most part they were pretty much as I expected.

It was hard to see people get hit. It was my first experience watching what this horror can do. I hadn't really thought about having to drag CH equipment around. Shitty deal but clusterheads are a helpful bunch. Even the children behaving badly at the moment.

Charlie

Title: Re: Tell me!!!!
Post by OneEyeBlind on Aug 24^th, 2003, 7:09pm

Hey LindaT ....... when I get back up to Kim's WE WILL MEET ! It was our loss as well. Dang the blackout !!!!!!!

Title: Re: Tell me!!!!
Post by CathiP on Aug 24^th, 2003, 7:14pm

Laugh? YOU are NOT gonna make me laugh more, are ya, Miss Fluffyknickers? Cathy's right....we are all guilty as charged....we have met.....and it's gonna happen again!
In addition, I am sooo looking forward to meeting Linda Howell and Virginia (9er Fan) in Oct.- perhaps Slammy....oh, and I already knew Marc....he's the reason I ended up here....sorry, Marc-I'm here for the duration, and I met Martin and Jill.....and I'm going to meet Brian Y in Oct......and, and....
In case anyone is listening, here's my two-cents worth.
Since it's been nearly a year and a half since I arrived, I have made some wonderful friends. it was never my intention to stay- just get the info, and move on. I found people who were without supporters, fun people who were simply a pleasure to banter with......angry people who were in constant pain, and kind people who encouraged me to stay. I may not be the most knowledgeable person on this website, but I do come here with only the best intentions......as do most who are here. I will not tout myself as an expert on the subject of clusterheadaches- but I will always be around, as as sounding board, "encourager"(I am NOT a groupie, nor am I a cheerleader)....and if more people would take even a modicum of interest in this site, perhaps a cure/control would be forthcoming. I will never intentionally harm anyone who resides here....my intentions are purely positive, and at the end of each day, I will wish you ALL PF.
If everyone here was focused on the most positive aspects, and posted with love and concern...AND RESPECT for one another, the anger would be uneccesary, and we could all interact without fear of recrimination.
As you sow, so shall you reap........sow the seeds of good intention, and your harvest will be bountiful.
Looking forward to meeting soooo many more in the future.......
BE PF!
Cathi :-*

Oh, and Hoots, and Coots.....I really look forward to meeting you 2...and Echo :-*and Grant :-*and Jonny :-*
and Suzy :-*and Charlie :-* and Kirk, Lee......well, good grief- ALL of the people here!!

Title: Re: Tell me!!!!
Post by cootie on Aug 24^th, 2003, 7:33pm

Ahh yes Cathi the best is yet to come ! (stick laugh sounds here) ;D ;D ;D Lookin forward to meeting ya too 9and alot of others on here).....and still sad I couldn't go ta NY the second time ta do so ! Pam that has clean feet ;)

Title: Re: Tell me!!!!
Post by Miss_Deleny on Aug 24^th, 2003, 7:46pm

Well, the only CHer I have met is my man ... hoping to meet others in the future. :)

~April~

Title: Re: Tell me!!!!
Post by Ueli on Aug 24^th, 2003, 8:02pm

I have met about 100 clusterheads and supporters,
50 in Atlanta 2001 and 50 in Regensburg 2002.

My sister I meet quite often.

Ueli

Title: Re: Tell me!!!!
Post by Karla on Aug 24^th, 2003, 8:21pm

I have met many in Atlanta and Vancouver at the OUCH conventions. About 100 peoples. Also I have met quite a few Wisconsinites that are clusterheads.

Title: Re: Tell me!!!!
Post by andy on Aug 24^th, 2003, 8:30pm

I have not met one yet. Do all of you really exist? Im wondering if im the only one and you all are a figment of my imagination. I guess ill have to go to the Fla get together to find out for sure. ..............andy

Title: Re: Tell me!!!!
Post by 2late on Aug 24^th, 2003, 8:43pm

i haven't met one yet...........you better believe we all exist andy! .............Jack

Title: Re: Tell me!!!!
Post by JDH on Aug 24^th, 2003, 9:21pm

I've met 6 clusterheads and their families and all have been this year.
I met the first four, M.R. Cerebus, Pink Foyd and BrianW in Chicago Memorial day weekend and and Big Dan and Koda seperately about a month afer that.
Also found out Carl_D lives close by and hoping to meet him in the near future so I can say I knew him when ;)
It has been AWESOME to finally meet other people who know what this is all about.
If ya haven't done it yet, I highly recomend it.

Jim

Title: Let me tell you
Post by Opus on Aug 24^th, 2003, 9:32pm

Nan, and ect. have told of my meetings,
It was unbelievable how you can become instant friends with peaple you have never met. The only thing we have is common is that we have felt, or seen, the pain. If anyone gets a chance to meet a clusterbud, do everything you can to make it possible. Chances are you will never be the same, and you will know beyond a doubt that you are not alone in your fight with the beast.

Opus/Paul

PS Hooter, I hope I get to be one of those yanks

Title: Re: Tell me!!!!
Post by Hooter on Aug 24^th, 2003, 9:56pm

Paul, Cathi, Cootie et al
We'd better get a date sorted for next year then!

Hooter aka W the B

Title: Re: Tell me!!!!
Post by jimbo on Aug 24^th, 2003, 9:59pm

I have met only one CH! He is not part of this board, and no matter how hard I try an how much I talk to him he just doesn't want to listen to me. WTF? I tell him about all of the other people including myself on this site , along with the wealth of information here but he just doesn't listen to me. I dunno, maybe he's suffered so long that he has become immune to advice and the fact that he isn't the only one that sufferes from CH's.

Believe me, I have talked my ass off to this guy, but he just doesn't listen to anything! What more can I do?

Seeya,

Jimbo

Title: Re: Tell me!!!!
Post by Big_Dan on Aug 24^th, 2003, 10:01pm

.... He's probably convinced himself that he's really alone in this....

I can see how he'd come to that conclusion on his own.... depending on how long and what type he's got...

-Big Dan

Title: Re: Tell me!!!!
Post by suzy617 on Aug 25^th, 2003, 5:13am

Never met another Clusterhead until I went to the last convention. Roxy was the first one I saw and sadly the first one I got to witness getting hit. :(
Otherwise it was a great experience. Strangest feeling when you do meet, its an instant bond. For those who havent met another CH yet, you really must put it on your priority list.

Suzy

Title: Re: Tell me!!!!
Post by badfly on Aug 25^th, 2003, 6:17am

I never met one b4, but it is definatly on my todo list. Hopfully I will be meeting someone from this board on the 4th :-)

Title: Re: Tell me!!!!
Post by Patrick_A on Aug 25^th, 2003, 6:23am

My Dad was a CH sufferer. I watched him struggle for many years as a child. His stopped about the same time mine started. Weird thing about CH's for me is. Ya get defensive with people who dont understand, and ya start shutting them out when ur in pain. I didnt talk about my CH's till i was well into my 20's. My Dad still has loads of sympathy for it.
I will go to the next convention, but i am a bit apprehensive about watching people suffer. I like my privacy when i get hit. I do all of the things that others talk about, i.e. Banging my head with my fist, poking my eyeball till it feels like its mush. These things embarrass me afterwards.
I will be more involved with CH people, and am committed to helping all i can!

PFDAN, Patrick

Title: Re: Tell me!!!!
Post by BruceD on Aug 25^th, 2003, 7:44am

I've only met one clusterhead ... Karla. Although I just found out that my next door neighbor from when I was a kid growing up was diagnosed last year with CH. He actually just had DHE treatment up with Dr. Robbins in Chicago but I haven't heard anything else. Kinda wierd.

Take care
BruceD

Title: Re: Tell me!!!!
Post by Georgia on Aug 25^th, 2003, 8:01am

Meet one? Shit...I married one. _{stupid stupid girl}

I met this long-haired freaky ass scary mother fucker once too. I think he was a clusterhead....hard to tell what he said exactly....he was too busy beating the crap out of my (now) husband and I was too busy running the other way. :)

I have met lots of clusterheads...and everyone blows my mind.....there are no words to describe it....there is nothing comparable....pure love...pure magic....instant understanding...the depths of which are wide and deep...wide and deep.

If anyone reading this has yet to meet a clusterhead and is anywhere near Houston TX.....this is your official invite. Name the time and place and I guarantee you'll have two clusterheads there to greet ya.

Email me: pixieg@txucom.net
Phone: 936-597-4801
Cell: 936-537-0452

Peace and love,
Georgia

Title: Re: Tell me!!!!
Post by stuey on Aug 25^th, 2003, 8:17am

I met one a week ago at my headache specialists office. It was strange but reassuring at the same time. Stuey

Title: Re: Tell me!!!!
Post by Donna on Aug 25^th, 2003, 8:32am

Met 14 two years ago here in my hometown, and will meet more in October.......and some of those that I'd met before. It's like being reunited with long lost family.

Title: Re: Tell me!!!!
Post by miCHel on Aug 25^th, 2003, 9:09am

Never met another one! I had nice private mail exchanges with a few and came close to meet with Ann on a few occasions but that's it...

Strange. I have been fighting this for almost twenty years and I have never spoke to a Clusterhead or even to anyone (except my neuro) who knows one. Talk about degrees of separation...

Another reason why this board is so important!

miCHel

Title: Re: Tell me!!!!
Post by 9erfan on Aug 25^th, 2003, 10:03am

I had the privilege of meeting DJ & SFChris last December when the Zipperhead was in town for his surgery. Instant connection!

Will be meeting CathiP, Cathy & Wes, and Linda Howell in October. Hopefully, a few more Californians will show up as well!

Virginia

Title: Re: Tell me!!!!
Post by brain_cramps on Aug 25^th, 2003, 10:51am

I've only met 2. Mike (Margi's husband) and Arby (Ross). Great people!!! Looking forward to meeting more.

I've spent hours on the phone with a few of you, but can't afford to do that anymore ::) (at least not for now ;)).

Grant 8)

Title: Re: Tell me!!!!
Post by kim on Aug 25^th, 2003, 11:04am

Last year I met (on telephone) Linda T who is a love by the way, and we have since then been trying to hook up (LOL) so far we've been tripped up by Fifth's Disease ( :o) and a tremendous black out :o We'll keep tryin!

Last week I met Cindra, NancyOneEye Blind, CathiP, Cathy(fenny) and Paul. I'm still flying from the whole experience. When people say it is like meeting a long lost friend - SO TRUE....I miss them all sumpin awful and can't wait to hug em all again.

To be honest I felt both excited and also a bit scared. I've only looked at my own clusterface all these years and felt many emotions b4 meeting another sufferer. All that fear vanished and there was only this incredible bond, screaming laughter and affection. To gaze into another face - can't rightly describe it and don't wanna start slipping into kimspeak ;D

Well wishes, Kim

Oh. I have showered and feet lookin much betta ;D

Title: Re: Tell me!!!!
Post by ZAIRA on Aug 25^th, 2003, 1:07pm

I know a lot of people from OUCH Italia... I didn't meet anybody of you... but when I'll be in Rome for Cluster Club, I'll meet Don... Mo and Chris (UK)... Ete (Germany)... Carmen (Spain)... In November I'll be in Chicago so I'll meet Paul/vig....WOW ;)!

Zaira

Title: Re: Tell me!!!!
Post by Linda_Howell on Aug 25^th, 2003, 1:17pm

I've been to 3 conventions now, so I've probably met 100 to 120 CH-ers and their suporters. I've watched people get hit and empathized with them and then when it was over, laughed with them. I've watched the supporters crying and laughing right along with us, waiting in the wings for the next one to hit.

To say there's nothing like meeting another clusterhead is a gross understatement. It's life-altering. It's making life-long friends who mean the world to you. It's almost a spiritual thing.

Where I'd be right now if I had never met these people, I hate to think about. LindaH

Title: Re: Tell me!!!!
Post by don on Aug 25^th, 2003, 5:54pm

If you want to meet more then someone really should go to the OUCH members forum. There is a thread there for next years convention proposals. So far..........no responses.

Title: Re: Tell me!!!!
Post by toothpick on Aug 25^th, 2003, 6:34pm

Johnny never met another clusterhead the D.R.s in this small town never have either. When I found this site and read the story about the fella ripping at the dashboard on the way to emerg I new I was in the right place. Read an article once in a med book about how we all look similar and have pockmarked faces never believed that bullshit from the start my skins great my heads fucked.
Felt pretty much alone but not any more and can't wait to meet a clusterhead face to face.

Russ

Title: Re: Tell me!!!!
Post by jonny on Aug 25^th, 2003, 6:41pm

Its going to be the greatest thing that ever happen to you, Russ.

Over the years hear ive met hundreds of clusterheads and it always hurts to say goodbye.....BIGTIME!!

......................................jonny

Title: Re: Tell me!!!!
Post by suzy617 on Aug 25^th, 2003, 7:03pm

on 08/25/03 at 18:41:57, jonny wrote:

Over the years hear ive met hundreds of clusterheads and it always hurts to say goodbye.....BIGTIME!!

......................................jonny

We know Jonny. Some of us even sneak away in the airport just so they dont have to say the word "goodbye" ;)

Suzy

Title: Re: Tell me!!!!
Post by jonny on Aug 25^th, 2003, 7:13pm

on 08/25/03 at 19:03:09, suzy617 wrote:

We know Jonny. Some of us even sneak away in the airport just so they dont have to say the word "goodbye" ;)

Suzy

For me it hurts that bad, sorry I didnt say bye.

.................................jonny

Title: Re: Tell me!!!!
Post by Linda_Howell on Aug 25^th, 2003, 7:14pm

When KOP and I got in the car with Bill and Deb to go to the airport, I saw Cat going to tears....but I was able to hold back mine til they dropped us off at the terminal.

Mind you, I have never met Cat before. People don't go to tears about people they've never met before right?

WRONG.

Not once have I met a clusterhead and said to myself, "I am dissappointed. Not once. LindaH who is going to tears again.

Title: Re: Tell me!!!!
Post by ShariRae on Aug 25^th, 2003, 7:25pm

I have not had the joy of meeting another clusterhead, however it is my goal that I WILL get to the next convention!!
Shari

Title: Re: Tell me!!!!
Post by toothpick on Aug 25^th, 2003, 7:27pm

Can't wait johnny I'am a sentimental bastard so I know about goodbyes and special people.

Russ

Title: Re: Tell me!!!!
Post by kim on Aug 25^th, 2003, 8:03pm

Hey, ole stinky only makes laughter and confused thinking followed by more laughter......that was always my way.

It came time to say goodbye. I grabbed on and did not want to let go. I sobbed all by myself on Amtrak - as I moved away from my sisters and brothers.............no kidden.........some folks meet and then politely move within worlds with a sigh of relief and practiced farewell. I felt a deep shift in my chest and was unable to stop the flood of love - was really hard to give up the connection. I know you know what of I speak.

I held on and said thank you from my heart as the tears came and grabbed on..........I said how much it meant and felt it in my bones.....it's a rare and special feeling that i will always cherish. Connections of the heart. WOW!!!!!!!!!!! :)

Title: Re: Tell me!!!!
Post by Mastifflvr28 on Aug 25^th, 2003, 8:24pm

I got that one Kim...sobbing on the plane for most of the trip home from NY.

Still can't believe the bond to someone you've never met before.

Still miss the porch...sigh,
Mast

Title: Re: Tell me!!!!
Post by OneEyeBlind on Aug 25^th, 2003, 8:32pm

Mast, you guys still miss the porch, some of us still miss the River. Shiiiiiiiiiiiiiiiiiiiiiiiiiittttttttttttttttttt. Why can't we all live right next to each other ????????????

That's it ........... I am going on a cross country trek !!!!!!!! Watch out you guys !!!!!!!!!! Iza commin' ........ as soon as I can get there !!!!!!!!!!!!!!

Title: Re: Tell me!!!!
Post by Mastifflvr28 on Aug 25^th, 2003, 8:43pm

Nancy...the "post meeting blues" are the WORST!!!
Mast

Title: Re: Tell me!!!!
Post by kim on Aug 25^th, 2003, 8:45pm

K, Nan, weather is good, goin to beach, be there in an hour ;D Fenny is waitin on the corner - LMAO!

I'm cryin again gawdamit. Subudy faat willyas? :-* Okay. A smarmy burp and I'll be ok. :D

PS: Those Halter Bras are a ripofff ::)

Title: Re: Tell me!!!!
Post by cerebus on Aug 25^th, 2003, 8:55pm

J- Rilla.....

The woobster and I have met several, one of the more, "enlightening" experiences I've had.

Peace,
Ramon

Title: Re: Tell me!!!!
Post by cootie on Aug 25^th, 2003, 9:25pm

Yup it was fuckenech COOL !!! Pam that's computer is a nearly has-been and not sure how long it will stay on.....it's friggin screw'd up bad.....wah !! It will be like leavein the porch all over again when it goes :'(

Doubt it makes it much longer without repair'd or beat with a steel ball bat (it's fairly new !!!!)

Title: Re: Tell me!!!!
Post by BillyJ. on Aug 26^th, 2003, 2:07am

Words can't expalin the feelings!!!!
Overwhelming!! A real 'Trip"

Instant Bond? tore me up to leave!

A bro once told me"fawck it,just walk away"
I couldn't do that,so I said my good-byes,one by one,
earlier in the day and just dissipaired in the darkness.
Even that was Very painful,even though I had never met
these people until a few days before,It hurt like hell
to leave. :'(

Posted by: Mastifflvr28 Posted on: Aug 25th, 2003, 9:58pm
Nancy...the "post meeting blues" are the WORST!!!
No,the "post meeting blues" and then not being
able to get into chat for a weak is THE worst! ;D

Alas..........it's not good bye,it's just.....till next time!!!
PF2ALL!!
Billy

Title: Re: Tell me!!!!
Post by UnsolvedEquation on Aug 26^th, 2003, 3:20am

I met one other clusterhead at Chelsea hospital (MHNI) but I didn't get much time to talk to her. It was the first time I had believed that this person goes thru what I do. It was kind of special to me, but I think she thought of it as no big deal. I gave her my e-mail address but never heard from her again.