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        Cluster Headache Help and Support >> Cluster Headache Specific >> Famous people with CH
        
(Message started by: coach_bill on Apr 13^th, 2008, 8:39am)

Title: Famous people with CH
Post by coach_bill on Apr 13^th, 2008, 8:39am

is there anyone who may be famous, or a sports star or someone very known to have CH, i have heard of nobody like that. i have heard of sports stars getting migraines, like Jason Kidd and Terrell Davis, my reason for asking is just to see if there is someone famous to get the word out to media about this and use there pull to help with research. thanks. coach bill

Title: Re: Famous people with CH
Post by debOUCH on Apr 13^th, 2008, 6:51pm

funny coach, i was thinking of this the other day.i take acting classes and i was wondering if any actors had...for i could not imagine how they would deal with.well, in live productions @ least.then i thought of sports figures also.............i did some brief"googling" on the computer, but i didnt find anything as of yet.....................i am glad u started this and will continue to do some research!
thanks
deb

Title: Re: Famous people with CH
Post by E-Double on Apr 13^th, 2008, 8:06pm

I don't know of any really famous people though it is possible that they too have been misdiagnosed as many of us have been.

we have a guy here who frequents the board ( I can't recall his screename) that is a relatively famous character actor. He appears on tons of sitcoms.

I wish I could remember.

And then there is me 8)

Title: Re: Famous people with CH
Post by George_J on Apr 13^th, 2008, 9:02pm

The opera singer, Denyce Graves.

http://www.andante.com/article/article.cfm?id=26112

"I ran into some real vocal problems, serious ones. I had a problem with headaches, terrible headaches that they diagnosed as cluster headaches ... I was losing my voice. I was losing everything."

Best,

George

Title: Re: Famous people with CH
Post by Gator on Apr 13^th, 2008, 10:27pm

on 04/13/08 at 20:06:09, E-Double wrote:

His handle is Buckeyescooter.

Title: Re: Famous people with CH
Post by BarbaraD on Apr 14^th, 2008, 7:02am

There was a football player who had to be pulled out of a game (on TV) and given O2 because of CH a year or so back. He gave a press conference about it. (I think it was back in 2004). We sent him a T-shirt and a letter from OUCH, but never heard back from him.

Hugs BD

Title: Re: Famous people with CH
Post by debOUCH on Apr 14^th, 2008, 9:58am

i found a thread on here from nov 26th of 2005 on this........did not have time to read tho!

Title: Re: Famous people with CH
Post by washed-out on Apr 14^th, 2008, 2:04pm

I have four persons from Polish site about CH. I don't know where did they find those information maybe even on this site so you prolly know about these people but maybe not all of you :)

They are not "current stars", though. Still famous (especially two of them, dead).

1. Thomas Jefferson

Quote:

"I was under attack of periodical headache. This is the tenth day.It has been very moderate and yesterday did not last more than three hours."

2. Franz Kafka

3. Oddvar Nordli - former Norwegian prime minister, had to resign due to his cluster

4. Frank Capra - movie director

Quote:

"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. I clutched my head, stumbled out to the broad lawns and over the hedges to the deserted tennis courts and then, there in the dark, I moaned, I panted. Ballooned my cheeks, blew out short bursts of air, licked my hot lips, wiped tears that poured out of my right eye, and clawed at my head trying to uproot the fiendish talons from their iron grip. One racking hour later the talons let go. The paroxysm eased as suddenly as it had convulsed. Euphoria set in. It's gone! Whopping headache, but it's gone!..."

Title: Re: Famous people with CH
Post by Lebowski on Apr 14^th, 2008, 4:20pm

I know Davis had to sit out of during the Broncos vs. Packers Super Bowl a while back.

Huge Broncos fan here!!!!

Title: Re: Famous people with CH
Post by tommyD on Apr 16^th, 2008, 5:55am

F.W. De Klerk, the president of South Africa who released Nelson Mandela and began the lifting of apartheid might have suffered from clusters. Researched this a little but would have had to get off my lazy butt and buy some books to confirm it.

Also, director Frank Capra, who made "It's a Wonderful Life," "Mr. Smith Goes to Washington" and many other films.

-tommyD

Oh, and the world-renowned tommyD.

Title: Re: Famous people with CH
Post by MJ on Apr 16^th, 2008, 12:27pm

on 04/16/08 at 05:55:59, tommyD wrote:

and the world-renowned tommyD.

Thats what I was going to say as well. :)

MJ

Title: Re: Famous people with CH
Post by MinxKittten on Apr 16^th, 2008, 11:55pm

ok, when i become famous i will make sure the world knows about cluster headaches.....

i will form a world wide foundation and raise millions of dollars and give grants to find a cause and a cure.

i will ask brad and angelina to donate...

i'm not making fun, i'm serious.

i hope and plan to be rich and famous some day, and it IS in my astrological chart, and i Pledge to you all that i will bring world wide medical attention to this cause.

i love my CH sufferer and i will do whatever it takes to help him get better, even if have to get rich and famous.

now yall better pray for me and send good vibes my way so i can get this done! :-*

Title: Re: Famous people with CH
Post by washed-out on Apr 17^th, 2008, 1:03pm

I wouldn't wish a CH my worst enemy but imagine that one day someone really famous, with big influence becomes a sufferer (even for very short period of time) D: It would help us a lot :l

Title: Re: Famous people with CH
Post by brewcrew on Apr 17^th, 2008, 1:39pm

on 04/14/08 at 16:20:39, Lebowski wrote:

Huge Broncos fan here!!!!

We'll try not to hold that against you.

Title: Re: Famous people with CH
Post by Jonny on Apr 17^th, 2008, 6:29pm

on 04/17/08 at 13:39:12, brewcrew wrote:

We'll try not to hold that against you.

[smiley=crackup.gif]

Title: Re: Famous people with CH
Post by KatzPurr on Apr 17^th, 2008, 11:01pm

I'm famous. My real name is actually Angelina. :D Seriously though... I cannot imagine with all the famous actors, singers, sports figures, writers, movie producers etc. that there aren't at least a few who suffer from ch. I would suspect that either they have been misdiagnosed or perhaps don't realize there are other sufferers like themselves.

In any case, I don't have a burning desire to be famous, except to become a published author someday. If that happens and I make a lot of money, I will most certainly use the profits to fund ch research. Hey, maybe I should write a book about ch... hmmm... [smiley=thumb.gif]

Title: Re: Famous people with CH
Post by sandie99 on Apr 18^th, 2008, 12:06pm

on 04/17/08 at 23:01:37, KatzPurr wrote:

In any case, I don't have a burning desire to be famous, except to become a published author someday. [smiley=thumb.gif]

That's a dream you and I share. :)

Sanna

Title: Re: Famous people with CH
Post by seasonalboomer on Apr 18^th, 2008, 1:20pm

Certainly in these days of whoring out the juiciest of details in the world of celebrity that if someone did have CH, it would be known.

Title: Re: Famous people with CH
Post by Sandy_C on Apr 18^th, 2008, 2:09pm

on 04/16/08 at 23:55:27, MinxKittten wrote:

Minx,

YOU GO BABE! GET ER DONE!

You've got my vibes. Just remember, when you are rich and famous, throw a bunch of money to DJ so he can keep this site up and running.

Sandy

Title: Re: Famous people with CH
Post by coach_bill on Apr 19^th, 2008, 7:56pm

wow, great anwsers!! im still in research over this. i just cant beleive there are no really big stars or movie actors that would come out of their closets, and admit to their predgnazone addiction.!! geez, maybe their agents tell them no for the PR reasons, but rest easy every CH suffers leaves a paper trail, and coach bill is on it.!!

Title: Re: Famous people with CH
Post by debOUCH on Apr 19^th, 2008, 10:01pm

coach...........(BTW, or like, really a Coach?,,,,,haha).......ck out the old thread i mentioned peviously, i think from 2005.............something about Lisa Kudrow's father...........(the girl from Friends).havent had a chance to look thru entire thread.......... [smiley=cool2.gif].ps coach.my daughter is on the CWPost Lacrosse Team and they are #1 in the country!!!(she is a freshman goalie, not c in too much time, but....next yr!!...).they are going to Texas for the semifinals in May, and hopefully finals!!! they were the National Champs last yr!!!)

Title: Re: Famous people with CH
Post by MinxKittten on Apr 19^th, 2008, 10:28pm

on 04/18/08 at 12:06:07, sandie99 wrote:

That's a dream you and I share. :)

Sanna

me too! me too!!

Title: Re: Famous people with CH
Post by Braindead on Apr 20^th, 2008, 12:14am

Recently my wonderful wife ask that I post a message on here about writting to Dr. Oz at the Oprah show. I realize your specifically asking for Famous People who suffer on this thread but none the less, if we all write to Oprah/Dr. Oz asking for Public Awareness and knowledge, if anybody can get the word out, OPRAH can....if she were to tell the world the sky is purple, people would then believe the sky is! She has that way about her and that Dr. is pretty darn knowledgeable! Just a thought....

Title: Re: Famous people with CH
Post by syrs842 on Apr 20^th, 2008, 8:11am

Hey Braindead,
I was looking on Oprah's website and I dont see anywhere where you can write to her about suggestions for the show. Do have any idea on how to do it. I think it's a great idea, especially if we all did it. I think it's just as important as any other illness out there. Especially since it can be debilitating for some of us at times.
Thanks,

Pat

Title: Re: Famous people with CH
Post by washed-out on Apr 20^th, 2008, 6:38pm

on 04/20/08 at 08:11:38, syrs842 wrote:

Maybe here (http://www2.oprah.com/health/oz/ask/oz_ask_plugs.jhtml)?

If you (whole CH commnity) want to do something like that, I think that someone of the board admins should make a new topic and stick it on the forums (to be read by everyone).

In my opinion there are two ways to pay their attention:
1. everyone send a mail/request on his own, writing short story about her/himself and about our problems (which are not only about the pain, are they?)
2. we write a petition and collect as many signatures of CH suferers as possible (there are many good online petition systems I guess)

I think that one of this thing (or both :>) would work :P

Title: Re: Famous people with CH
Post by RichardN on Apr 20^th, 2008, 8:06pm

Well . . . I was almost there guys.

About three months after finding this site . . . and (finally) getting some control after 13 months of daily, multiple attacks . . . I had a film audition for the fourth lead (behind Jude Law, Nicole Kidman, Rene Zellwegger (sp?))

My only audition tape (for Screen Gems) was good enough for a director call-back . . . and he didn't even want me to "read" again. Just a chat, discussed some things on my resume . . . . that's when I shot myself in the foot. On my resume I list CH and a "limiting skin condition (EB)". When he asked about this . . . I couldn't keep myself from going into a full explanation of CH and extoaling the virtues of 02 . . . . when I should have been using that limited time talking about the character (which I had down cold . . . and yes, I would have tried to talk the director into giving him clusters . . . could've worked). Basically, I gave them concerns about my ability to function. Films are incredibly expensive . . . every minute of a shooting schedule (and all involved) costs many $$$.

Had I not found this site, I wouldn't have been able to consider the audition. And then, I couldn't shut-up about it . . . an unfortunate messianic compulsion I have when there's a possibility I have the "answer" to another's problem. There were only 2-3 other actors up for the role . . . and yes, I would've produced a more memorable character . . . that may be immodest . . . but it's true.

A bit of trivia about Cold Mountain (the film in question). I had to get a passport because all the snow scenes in the movie were shot in Romania (there's not a lot of snow in the Carolinas in August/September . . . Screen Gems has sound stages in Wilmington). So, it was just the principles and crew that went to Romania (for a month). That job . . . and subsequent residuals would have gotten me out of debt and built a house. The second time I've come VERY close to "the big time".

So . . . if there are any film (sorry . . . don't have the stamina for stage anymore) directors/producers out there . . . pm me and I'll send you a copy of my resume ;)

Be Safe, PFDANs

Richard

Title: Re: Famous people with CH
Post by MinxKittten on Apr 20^th, 2008, 10:45pm

Richard,
you're already a STAR in our eyes :-*

Title: Re: Famous people with CH
Post by Dee on Apr 28^th, 2008, 12:23am

Hi Folks,
I'm not really new here, I just don't feel comfortable "posting", would rather read... you all have so much to give, and have saved me without even knowing (Thanks for everything)!
Anyhow, if one of you budding authors were to write a book titled "Suicide Headaches", expound on some of the gory details, then follow-up with the resolution many of us found in dealing with the beast, viola! The title would catch anyone's attention. It's a "Victim TV" hit... the kind of book Ophrah loves!!!
Just a thought.
Again, thank you all, foreverything, forever,
Dee

Title: Re: Famous people with CH
Post by FK5 on Apr 28^th, 2008, 1:19pm

In regards to getting the word out in the media: I have some suggestions.

Being in marketing I would say that you are always on the right track if someone famous has a "condition", usually it's out in the open and then they have a foundation and money and attention gets to the cause. Then they have a media frenzy and PR people propelling the cause.

However, since nobody of any celebrity has made this known to a level of attention, I would say it will take this entire community to work together to make it happen and be our own PR.

The media news is usually circulated information that starts somewhere and evolves through constant pushing by the people behind it. An example is a missing person. It will get attention once or twice but its the family behind it that make it constant news. Without the pushing of the family being seen and heard, the missing person unfortunately just becomes another statistic. There's thousands of people missing, yet only a few continually hit the evening news.

I think the objective is to get CH attention so that ultimately a cure could be found but more realistically to help others who do not know about this support board, for those who have been misdiagnosed and unaware of CH, those who have not seen a professional and do not know what CH is and to get health professionals educated on how to diagnose and treat this condition.

For the most part, media writers are looking for stories. They get stories from people. They don't have a list of things to write about. I would start by seeking out a key health writer in the USA today, New York Times, Chicago Tribune and others. Have one person write to them and have the rest of our group follow up with words of encouragement to see our support group and write about us. Imagine getting hit with a thousand e-mails with the subject line reading CLUSTER HEADACHES!

One, two or three people and 1, 2 or 3 media outlets doesn't make a splash. A thousand people does if you do it in a professional way. 50 media outlets makes a splash. It will get written about. Continue to push as a group and it will get talked about and then it will be seen on the local news, then to to the National news and then it will be added to every regenerated migraine story that the news constantly talks about.

It's not about getting one story done. It's about getting our group to push push and push to get 100 stories done. It takes dedication to make something happen. It would require everyone on this board to participate somehow.

I would like to hear everyone's thoughts..

FK5

:) :)

Title: Re: Famous people with CH
Post by andrewjb on Apr 28^th, 2008, 3:52pm

:), count me in FK5, sounds as though you've the brewings of a plan. i'am in the uk, not sure it matters in this global age. andrew.

Title: Re: Famous people with CH
Post by coach_bill on Apr 28^th, 2008, 9:37pm

it was in the local paper here in cleveland. dr. donahoue or something like that. and i like the book idea. It was so hard for me to even try to explain this to my sister, honest to god, if you dont have CH or if your not a close supporter, you could never really understand it, no matter if i turned blue trying to explain, but most everyone listens to the people on the tube, they feel like they can RELATE. someones out there, their is a rockstar holding a bag of ice on his or her face right now, they are just in cluster denial. coach bill

Title: Re: Famous people with CH
Post by debOUCH on Apr 28^th, 2008, 9:57pm

count me in fk5

Title: Re: Famous people with CH
Post by GrandPotentate on May 1^st, 2008, 10:16pm

I was published in several publications like "Water & Wastes Digest" (no shit!), but gave that up. My day job doesn't lend itself to publicity. I do my best to pack a lot of activity between cycles. I do some serious music. I've also been doin some accordion gigs at German breweries and Irish pubs, and am probably among the top ten blues accodionists in the universe. So far, Letterman hasn't called. When he does, I will speak for us all!

Seriously though, how do we get the attention of the real new writers?

Title: Re: Famous people with CH
Post by Brew on May 1^st, 2008, 10:39pm

I sang backup for Barry Manilow in Milwaukee on October 20, 1982.

I guess that makes me a superstar with CH.

Title: Re: Famous people with CH
Post by BMoneeTheMoneeMan on May 1^st, 2008, 11:50pm

on 05/01/08 at 22:39:47, Brew wrote:

I sang backup for Barry Manilow in Milwaukee on October 20, 1982.

Get the F outta here, Bill. You did?

Title: Re: Famous people with CH
Post by midwestbeth on May 2^nd, 2008, 1:33am

on 05/01/08 at 22:39:47, Brew wrote:

I sang backup for Barry Manilow in Milwaukee on October 20, 1982.

I guess that makes me a superstar with CH.

Pics?

Title: Re: Famous people with CH
Post by Brew on May 2^nd, 2008, 8:36am

on 05/01/08 at 23:50:59, BMoneeTheMoneeMan wrote:

Get the F outta here, Bill. You did?

No lie. Mr. Manilow's concert tour stopped in Milwaukee that night, and as part of our semester assignment for the UW-Milwaukee concert choir, we had to learn the backup choral parts for about 5 of his songs in advance.

The sucks part was that it was the same night as game 7 of the world series between the Brewers and the Cardinals, and guess who didn't get to watch it? I've never forgiven Mr. Manilow for that. The bastard even had the gall to rip off his shirt, revealing a Robin Yount jersey underneath. At that point he was just rubbing my nose in it.

And no, Beth, there are no pics. I'm kinda glad there aren't. ;)

Title: Re: Famous people with CH
Post by DennisM1045 on May 2^nd, 2008, 10:32am

on 04/28/08 at 13:19:25, FK5 wrote:

It's not about getting one story done. It's about getting our group to push push and push to get 100 stories done. It takes dedication to make something happen. It would require everyone on this board to participate somehow.

My thougts are that this is a great idea. If you haven't already, you really need to join OUCH and get involved. That is the organization tasked with getting the word out. I think you could be a powerful part of that solution.

-Dennis-

Title: Re: Famous people with CH
Post by EstieSA on May 3^rd, 2008, 5:04pm

on 04/28/08 at 00:23:09, Dee wrote:

Hi Folks,

Anyhow, if one of you budding authors were to write a book titled "Suicide Headaches", expound on some of the gory details, then follow-up with the resolution many of us found in dealing with the beast, viola! The title would catch anyone's attention. It's a "Victim TV" hit... the kind of book Ophrah loves!!!

Now this^^^^^is a good idea! Any takers...?
:) ;)

Title: Re: Famous people with CH
Post by ak_baumgard on May 13^th, 2008, 9:59am

Dear Coach Bill, Being a Chronic ch'er(over 10 yrs) one of the negative feelingsI struggle with as an accompainment to my headaches is a form of free-floating shame. That is, since I seem to get struck at anytime, anyplace and soon dissolve into what has a body but is basically a lump of moan and groan pain that most people, even my loved ones, don't seem to understand. For example, there I am with my daughter and granddaughter enjoying a celebratory meal, all dressed up, looking and feeling good, counting the blessings of family and then...Wow! backslapped by the Beast! So I'm suggesting that CH may be a "closet" afflication for the famous.

By the way there is an interesting book, The Life & Times of Captain N" by Douglas Glover(who taught me when I was getting my MFA) set during the War of Independence in which one of the main characters is beset by what appears to be CH's. It's an interesting read as the author has great powers of description.

Title: Re: Famous people with CH
Post by LeeS on May 13^th, 2008, 11:54am

I once snogged a girl who dated David Cassidy, if that counts :-/

More seriously, Arthur Ransome may have been a clusterhead:

http://www.acnr.co.uk/mar_apr/ACNR_MA07_neurology.pdf

http://en.wikipedia.org/wiki/Arthur_Ransome

He's dead now though :'(

-Lee

Title: Re: Famous people with CH
Post by wanna_swap_brains on May 13^th, 2008, 12:24pm

thom yorke?? (radiohead)

Title: Re: Famous people with CH
Post by LeeS on May 13^th, 2008, 12:52pm

Neigh me lad, am thom Londinium :D

Title: Re: Famous people with CH
Post by LostAgain on May 14^th, 2008, 1:57pm

I don't know if any of you saw the House M.D. episode had a kid that suffered from cluster headaches, supposedly. I don't think they did a very good job of portraying them though. What did you all think?

Title: Re: Famous people with CH
Post by Tara Ann on May 15^th, 2008, 9:39am

on 04/18/08 at 12:06:07, sandie99 wrote:

That's a dream you and I share. :)

Sanna

Add me to that! Someday, sometime. If the dopeymax doesn't destroy my brain too awful much :D . I also want to include some sort of photography.

Title: Re: Famous people with CH
Post by MDR on May 15^th, 2008, 5:13pm

SPORTS PEOPLE: BASKETBALL; Sonics' Gill Is Sidelined
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Published: November 25, 1993
Seattle SuperSonics guard KENDALL GILL, who suffers from recurring cluster headaches and who collapsed at practice on Tuesday, did not play at Sacramento last night.

"He will remain in the Seattle area to undergo testing in an attempt to determine the cause and treatment for the headaches," said the team's spokesman, BILL EVANS.

The Sonics were midway through a two-hour practice and running a three-man weave drill Tuesday when Gill went down at the side of the court, observers told The Seattle Post-Intelligencer.

"I looked over and he was lying on the floor," said his teammate VINCE ASKEW. "That was scary to me. It's scary on TV when you see it, but to be right beside him. It was freaky stuff."

Gill was given oxygen by the trainer, FRANK FURTADO, and had a series of tests Tuesday afternoon and evening.

Cluster headaches can be more severe than migraines. They cause intense pain behind one eye and can wake the sufferer at night for periods of weeks or months. (AP)

Title: Re: Famous people with CH
Post by KatzPurr on May 20^th, 2008, 9:27pm

Your ideas are awesome Dee and FK5 and I'm definitely on board! If I counted correctly, there are at least four of us in this support group who have expressed a strong desire to become published writers and I think this may very well be our chance. What do you girls... Sanna, MinxKitten, and Tara Ann think about a collaborative work of some sort? Perhaps we can even include stories from some of the members of CH.com. Let me know what you all think.