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New Message Board Archives >> 2003 Posts >> MONTEL WILLIAMS:  I asked him to help us.
(Message started by: SommelierCH on Mar 23rd, 2003, 8:25pm)

Title: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 23rd, 2003, 8:25pm
Well kids, this is my best shot towards finding a cure.

Mr. Montel Williams, an honorably decorated former navel intelligence officer, dined at the restaurant that I work at, last tonight (for those of you outside the US, “Montel” is a popular daytime television show, hosted and produced by Montel, that covers the gamut of human experiences). Mr. Williams and I have talked “wine” for several years. He is the most gracious celebrity that I have met (and believe me, I go way back… past: George Burns, Jimmy Stewart, Presidents, Royalty, et al).

Ever since I read that Oprah totally shined off (on?), the Clusterheads that tried to communicate with her, I thought that Mr. Williams would have a much more open mind. I wish I had been more prepared, when he came in last night. I only had this one copy, with me, of the info that I had given to my managers at work and posted on the employee bulletin board, during my last cycle. You can see my plea to him, scribbled in between the paragraphs (sorry girls, I scratched out my number). I apologize to Mr. Williams for “publishing” a private correspondence, as it were, but the Cluster family needs to know. This was the best I could do at the time. When he was away from the table for a moment, I handed him this page, and talked for several minutes about Cluster Headaches (totally unprofessional), mentioning that even the smallest segment on his show would be a great help for us. Considering the tragedy at Duke, where the girl received the wrong transplant, medical misdiagnosis MUST be newsworthy, and we are a bed of misdiagnosis’.



http://tinyurl.com/801

http://tinyurl.com/801d



We must fight to get Cluster Headaches declared a “disease”. This is the easiest and fastest way to affect change at all levels; i.e. Government, Medical, Insurance and Employment. This would, also, open up Government grants and research money.

Alcoholism was declared a disease several years ago, and, by law, the insurance companies were forced to take notice and comply, as were the employers. After that, the bucks flowed. No pharmaceutical company can make money off of an “affliction” or a “syndrome”, but they can make money off of us, if we are a “disease”.

We must have an “attainable” goal to fight for, something concrete. If you tell a Legislator that you want a cure for Cluster Headaches, they will blow you off because it’s out of their scope. However, if you say that you want Cluster Headaches declared a disease, that’s a legislation procedure that they can deal with, this is something the general public and the media, can understand. THE CURE WILL FOLLOW.

Does anyone have a video of a Cluster Attack? Would anyone be willing to film one? If the nation could see what a cluster attack is like, on Montel’s show, I bet that the insurance companies will bend over backward to fill the Imitrex (Maxalt MLT 10mg or Zomig ZMT 5mg, for me), and the “cheapest solution”-- O2. Yes folks, Oxygen for all of us, insurance or not, free health clinic or HMO, they will have to give it to us, because the public will be appalled that they haven’t. Somebody has got to do it, for the group.

I ask you, my Cluster family, to support this thread and keep it at the top. Mr. Williams will be checking us out, and I am sure you know what national media attention means, any time that we can get it. Please let him know that we appreciate his consideration.


God bless our troops, may they also have PFDAN,
David J.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by amber on Mar 23rd, 2003, 8:33pm
Hey David

I hope this works, it would be nice for people to see this for once!!! I know that CNN didn't even mention clusters the last time they talked headaches.

I don't have myself on tape having an attack but there has to be someone who can film themselves.  I live alone so it's pretty hard to get.  Whatever you DO need however, let me know and I'll see if I can help.

It was really nice of Montel to listen to what you had to say under the circumstances.  Did you send him to the ouch site as well?  If he's serious about it his boyz'll do research I'm sure.

Good on ya!
Amber

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by achinghead on Mar 23rd, 2003, 9:09pm
You want film??!!  HUH.. I can give you all the screaming, crying, pacing, begging, slobbering, pounding,kicking, praying,fit throwing, summersaulting, running,strutting,backflipping,cussing and any other cluster pounding deamon making possessed looking film you want... just come over and bring your cam.. Im in the middle of my cycle now....
It is something that the public needs to be made aware of.. I can only remember the one time seeing it on television and I believe it was a tiny piece in a segment on 20/20 or something maybe about 6 or so yrs ago.
I sure hope somebody in the publics eye can help us!

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Edna on Mar 23rd, 2003, 9:10pm
Keep us at the top......that sounds wonderful to me.

What a wonderful thing you have done here David J..........and slight chance is better than nothing.

After suffering for over 25 yrs. with this dreaded disease of HA, it would be wonderful to be in the limelight so that people everywhere would KNOW about us...........that we are NOT migraine sufferers, it's called CLUSTER HEADACHES

It's astonishing to see how little is even mentioned about cluster headaches in the material my son studied in nursing.  ONE SMALL PARAGRAPH!!   He knew more, but goes to show how little comes our way in dealing with diagnosing our disease!!

Let's all hope that this is a big break that we here in this family need!

wishing nothing but pain free moments,
EDNA

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Georgia on Mar 23rd, 2003, 11:26pm
Nice job!! I am curious as to what Montel's response was. Did he seem open to your approach? Had he heard of them before? Did he give any mention that he would look into it or was interested in doing a show?

There was a person here not that long ago that made a documnetary on ch's. I believe his name was Ali. I think that Bob P has a copy of that tape. I don't know if there was a recorded attack in it or not. You can search the archives or contact Bob P. Maybe you could send a copy to Montel?

You did a great thing here. Let me know if you need any help.

PEACE NOW,
Georgia

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Charlie on Mar 24th, 2003, 1:46am
You're right kids. It is a good thing you have done.  Montel needs to see us here....well most of us....to know what this horror is like. Nice going and good luck.

Georgia: I was about to make some kind of nasty post so you would reply. It's good to hear from you. It's that guy Den's fault anyway.

Charlie

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Mark C on Mar 24th, 2003, 1:48am
What a cool thing to do David...thanks. To show my apperciation I have a link that made me think of you when I found it.


http://www.tcsn.net/rags/bum/top_5.jpg


http://www.tcsn.net/rags/bum/

;D

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by juvy on Mar 24th, 2003, 2:23am
WTG David,


I'll keep my fingers crossed and hope this goes thru for the sake of sufferers everywhere.
I just woke up and the brain isn't fuctioning yet so that's all you get  :P

Cheers,
April

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 24th, 2003, 3:20am
Georgia—Montel was very open to my approach, he had no choice, I accosted him  ;D. He was very cool; I whipped out my page of info as he was coming back from the bathroom (Clusterheads on a mission have no shame) and he focused immediately on what I was saying, and listened intently. He took the page of info and said he would read it and look into it. I really didn’t give him a chance to respond whether or not he had heard of Clusters, I talk a hell of a lot more and faster, than I can write, and he had a table full of high-profile celebrities that he had to get back to (night before Oscar, you know). He is too much of a professional to promise a show segment on the spot—but, I can tell you that we got our big ol’ fuckeneh shoe in the door!! As far as I am concerned, that means it will happen. The important point is that we were not shut out, unlike a previous television host.

But, it will happen sooner if we help them with the preliminary research, to prove that a Cluster show is viable, and it’s shock value will increase viewer ship. Can’t you just imagine the ad promo’s leading up to the show? Can’t you just see the audience at the show, sitting dumbstruck, as they find out about us? Can’t you just hear them saying: “Oh my God! I had no idea that anything like this existed!”. We have to learn to play the game, if we are going to win. And we will win, one step at a time.

Bob P.—Do youze gots the tape?


It is now my personal goal to make sure this show happens. FUCKENEH!!!
David J.

P.S. Mark C, LMAO. I guess that the lower alcohol content of “Annie Green Springs” keeps it out of the running. At least two of those are made by Gallo, as is the Peter Vella box wine that I am drinking right now.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 24th, 2003, 5:19am
WE WILL NOT GIVE UP!     Here is a way you can help.


OUR NEXT STEP:    Since, at this early stage we are lacking video of a Cluster attack, I have another simple idea. I would like to compile some posts and threads off of our message board and archives into a Booklet, to send to Montel (and eventually others), which will graphically and heart wrenchingly tell our story, in our own words: “Dances With The Beast—Living with Suicide Headaches” (I love the dichotomy of “Living” and “Suicide” in the same line, we are some tough SOB’s). If there are, eventually, profits from the Booklet, all proceeds go to OUCH.

The beauty of this plan is that the Booklet has already been written, it just has to be put together. Since all the posts, were posted, knowingly and proudly, in the Public Domain, for any and all of the world to see, there are no copyright problems. But, who would object anyway? It’s for the cause.

All of us have told our story here—now it’s time to make it count for something!!! “NO PAIN, IN VAIN”!! (Damn, I like that one, too)

Here are the categories that I have mapped out, for the different posts, to be included in the Booklet:

How we support and love each other.
The strength of the Supporters (you are angels for all of us).
Short bio’s of personal hell.
Hassles with Doctors.
Hassles with Insurance.
Hassles with Employers.
Definition of our pain.
How we deal with our families, how our families deal with us.
Remedies we’ve tried, to relieve the pain.
Scripts given for meds that do nothing for CH.
Meds that fuck up your life.
Financial burden of CH.
The recent post where jonny responded with: “I beg to differ with you.” I still ROTFLMMFAO!!
Heartbreaking posts, that still make us cry.
Heartwarming posts, that still make us cry.
The fact that people have found better relief from their pain, from a lay group of anonymous strangers, than they have from the trusted Medical Community, posts.
Any life-threatening misdiagnosis’.
Suicide.


If there are any editors, writers, or hell, anyone who can just read, out there—or a bunch of ‘em—who can help coordinate this—JUST JUMP ON IN!!

We have 19 categories. If ten people would search for the best posts or threads in just 2 categories each, we could whip this out in no time. 20 people is like a Cray computer (yea, yea, I know that I’m dating myself. But, I’m not kinky, I don’t tie myself up first).

I feel in my bones, that this is a major window of opportunity for our Cluster family. I am a Clusterhead, filled with righteous indignation at how my sisters and brothers (and me too, damn it) are treated. I will not take “NO” for an answer, anymore!

Let’s band together, and get something done. FUCKENEH!!!
David J.

P.S. Wish me luck, the “Sommelier of the Year” (CA) awards banquet is tonight.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by catlind on Mar 24th, 2003, 7:25am
Good luck with sommelier of the year David!!!!!!!!!

I think it's awesome that you've done this!  You rock bro!  I'd volunteer for video but my head is being too cooperative to general quality of life and is only pestering me with minor break through low kip headaches hehe.

There is one aspect to this that is a definite viewer appeal right now too.  Military members and families that suffer.  There are a multitude of us here.  If we can be sure to include that aspect, under the current world circumstances, it may draw an even bigger audience.

Do you think he would be interested in the convention?
I may send letters to the Dr's invited to speak and tell them that we are actively seeking national media attention and maybe that will get them to speak!  Just running some thoughts in my head on the board.

Cat

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Woobie on Mar 24th, 2003, 9:31am
Way to go David!    I hope it pans out!!

As far as message board topics to print out... the one I remember the most is the SUICIDE one by DTruett.  (where is he by the way???  is he still here??).

That's the best one.  Ran the whole way from suicide, to meds, to the love everyone has here, ways to cope,  family problems, doctors screw ups.(when his dr gave him contraindicated meds and he went into a coma.. ) .... the pain and utter frustration of it all, and the love here..  

That's the perfect thread!!  There's like a bagillion replys.. but .. it's one i remember well.  

If I had to pick ONE.. that would be it.

Tina   :-*

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by maggie_may on Mar 24th, 2003, 9:39am
David,

I think what you are doing is wonderful.  All the pain and suffering that we go through - sometimes on a daily basis - absolutely has to be made public.  People have to be aware that this extreme pain does exist.  And you're right.  Sooner CH is brought to the public's attention, the sooner it is to getting classified as a REAL disease, sooner it will be for us sufferers to get better help from doctors and insurance companies, cheaper (one can hope) and easier access to the meds that we need!

I'd love to help out.  I'm currently leaving a cycle (I hope  :-/ ) so I don't think I could help very much with the video tape.  BUT I am an editor and would be more than willing to help out with any work that you would need done - just drop me a line.

Great job here   :D

maggie

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by marty on Mar 24th, 2003, 11:27am
David..

Good job! :D

Lots of Jill's writing on its way to you via e-mail, neighbor owns a digital video camera that I can use and Jill has agreed (I guess that this time I won't stop her from banging her head) :D

Marty

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Edna on Mar 24th, 2003, 1:24pm
GEEZ Marty......you da man.......you read my mind and what I wanted to suggest here before I could even get to post it!!!!!!

David, I think we have TWO of the best people with prime examples of both what we suffer......and how we act with one another.

Jill has suffered hell for over a year now, is still in the head banging stage........her parents have come around......Marty is her godsend........she is young and at the age that many of us have started with ch........

and then the wonderful story of how she was brave enough to accept Marty's help.........

AND to top it off, Marty - - - the wonderful person who has given his all to helping Jill - - -

What you say everybody.........thinking these 2 ppl would go a looooooong way to represent us chers.

What you say Jill and Marty........I think I'd like watching you two, plus whatever others of us it takes to make the Montel show.  

After all, anyone who watches any of Montel's shows knows how it runs, he listens well and also tells it like he sees it when needed!!!!!!!!

WOW, David       think you've gotten us onto something here.

EDNA

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by cathy on Mar 24th, 2003, 1:54pm
Hi David...glad to see this post, as you know Wes has agreed to let me video him again when he's next in cycle...although I hope that won't be too soon... :-/, got a friend who works within the BBC going to email her and see if we can get some publicity this end too...will keep you posted....

Cathy & Wes

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by marty on Mar 24th, 2003, 1:57pm
eDna..

nO enGlish speeek i..  tV noo goood

(But Jill does) ;D

MaRTy

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Linda_Howell on Mar 24th, 2003, 3:22pm


David,    (bringing this to the top again)

     Montel Williams is one of the most caring individuals on T.V. and how great it is that you were in a position to accost him......LOL    You're correct that we have no dignity when it comes to these headaches.

     Yes, Jill has agreed to have herself video-taped, but if she decides not to, I will.   Since I am chronic, it's just a matter of waiting an hour or two for one to hit, so count me in.  No one wants their pain exposed, but if it is for the cause of educating people on these horrendous headaches, then it's for the good.  

      I have seen the tape Aki made and NO.......even though it was a very good educational tape,  no headache was shown.  

          Linda Howell

       

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by hdbngr on Mar 24th, 2003, 3:44pm
David:

Docs were always asking me to describe what a cluster headache was like. We couldn't seem to convey how bad they actually were, so my husband taped a few "episodes". The real bummer came when those same Docs wouldn't watch the tape. We brought it to several appointments, and waited until they asked what happened, then said "let us show you".

They seemed embarassed and said it "wasn't necessary". Eventually, I erased it, because I couldn't watch something I already live, and hated having evidence of it in the house. It was one more brick in the wall of sadness and resentment I have found in trying to treat these things. They not only don't understand, they don't WANT to know.

Make some tapes, everyone. I bet if there was a camcorder rolling the next time someone went to the ER, there would be better treatment, too.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by hdbngr on Mar 24th, 2003, 4:02pm
Back David up everyone!

Go to:

http://www.montelshow.com/show/tell.html

Maybe if there is enough traffic, they will put David on the show!


Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by 9erfan on Mar 24th, 2003, 5:11pm
David-

This is so awesome!  Thanks for having the guts to get in Montel's face for us!  It's nice to know that not all celebrities act like total jerks around the "common man".

I've only seen a tape of cluster a few years back on 1 of the news programs (probably the same one that everyone else has seen).

I would also be willing to help with the editing and research.  Please let me know what I can do.  I agree, I think the Marty-Jill story is a great one to tell.

David- good luck tonight, I wish you the best...I have to be honest with you I didn't know what a sommelier was until this past weekend.  There's a new show on the TLC network called "Faking It" and Friday night's show was about a beer-guzzling champion who over a 3 week period trained to be a sommelier.  It was really interesting.  All of a sudden, the light bulb went on  ;D
and I figured out what your user name meant.  DUH!!

Obviously, I rarely eat at the finer restaurants!!  ;D

Virginia

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by das on Mar 24th, 2003, 6:06pm
David,

Good One.

Hope this works out. I was onced interviewed on Canadian TV (CBC) about CHs, with the primary goal of inciting the provincial governments to pay for oxygen use. The file is still on the health minister's desk. The CH community in Canada has recently submitted a petition, but still no word.

I am certain that having Montel speak about CH would be good, no doubt. However, I wouldn't expect any major progress out of one TV story. If we really wanted to get our acts together, we could mail out packages like the booklet you are putting together plus other materials to every major newspaper and magazine in the in the US and Canada (to begin)...

It would be the grassroots.CH awareness campaign.

Just a thought.

Good Luck.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by WendyHowe on Mar 24th, 2003, 6:13pm
David

Good luck for tonight and what an opportunity with Montel Williams. It won't just be America if you succeed as I think the show is sold all over the world.

Huge luck on both counts
Wendy

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Darleen on Mar 24th, 2003, 7:06pm
Hey David,

I just sent off a message via Montel's webpage about clusters and that we would love if he would do a show about clusters.  I guess we will just have to wait and see now.

D :)

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Jill on Mar 24th, 2003, 7:51pm
Hey all...

Just wanted to let you know that the tape was made this afternoon, successfully.

I hope that the tape helps and I was just wondering if, since we all react to the beast differently, would it be better to have more than one tape? Since Linda has also offered, we have two there - just a thought

Guess that that is all. Great work on this, good that someone stepped up and took action and Montel Williams is the one for it!

Thanks for the kind words as well, on Marty's and my behalf.

Jill


Oh and dont let Marty fool ya - he is a Swede and always claims how brilliant they are!  ::)

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Frank on Mar 24th, 2003, 9:27pm

on 03/23/03 at 21:09:37, achinghead wrote:
You want film??!!  HUH.. I can give you all the screaming, crying, pacing, begging, slobbering, pounding,kicking, praying,fit throwing, summersaulting, running,strutting,backflipping,cussing and any other cluster pounding deamon making possessed looking film you want...*snip

I put three large holes in a wall a couple of weeks ago. Right now I have a wall that I need to patch... but I wish somebody would have caught me on tape doing it... would have made good OUCH advertising material for medical insurance companies. I tried explaining a Kip-10+ to my wife (again) but she still doesn't understand the intensity of the pain we endure.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Frank on Mar 24th, 2003, 9:32pm

on 03/24/03 at 19:51:46, Jill wrote:
Hey all...

Just wanted to let you know that the tape was made this afternoon, successfully.

I hope that the tape helps and I was just wondering if, since we all react to the beast differently, would it be better to have more than one tape? *snip

I doubt that one of my Kip-10+ episodes could be shown on network TV. It would traumatize people. (It scares the shit out of my kids).

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by fubar on Mar 24th, 2003, 11:37pm
Jesus, I don't know if I could watch a tape of another clusterhead having an attack.  It's kind of like that guy-reaction to seeing someone kicked in the balls... you just don't need to see it cause seeing it makes you have sympathy pains.

Ouch.

-Fu

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by WendyHowe on Mar 25th, 2003, 1:18am
David

Did you win?

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 25th, 2003, 7:50am
FUCKENEH! I won!

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by brain_cramps on Mar 25th, 2003, 8:03am
FUCKENEH!!!

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by 9erfan on Mar 25th, 2003, 11:12am
DAVID- THAT'S SO AWESOME!! CONGRATS!  ;D

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by CathiP on Mar 25th, 2003, 1:35pm
YEAH! YAHOOOOOO!!!YIPPPPEEE!!!!!!! Our David, CH Extraordinaire, Auction Caller, general cheerleader/sufferer himself........................................
SOMMELIER OF THE YEAR!!!!!!!!
I've been waiting for this news, David! Congratulations to you!!!!
Think I'll go do my happy dance!!! Great job, David!
Cathi

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by BobG on Mar 25th, 2003, 2:03pm
Congratulations David!

I'm going to the 7-11 and get a big box of the best wine they have and drink a salute to you.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by cootie on Mar 25th, 2003, 2:47pm
T-TOTALLY cool David......Pam-Coots-thinkin-David's-way-cool   :)

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 25th, 2003, 3:12pm
http://tinyurl.com/8565

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by BobG on Mar 25th, 2003, 3:21pm
Cool David  :D

It says Sommelier of the Year Crustacean.

What do they mean by that? Are they calling you a bottom-feeder? ::)

Bob-don't-know-crap-about-wine-terminalogy-G

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 25th, 2003, 3:26pm
LOL,

Crustacean, is the restaurant, that pays me to bottom feed.

David J. (too drunk to type)

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by 9erfan on Mar 25th, 2003, 3:36pm
David,

Is that Crustacean the same as the one in San Francisco?  Yum!   ;D

V.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 25th, 2003, 3:44pm
yyyyyyeeeeeeepppppppppppp1111111.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by suzy617 on Mar 25th, 2003, 4:24pm
Congratulations David!  Man, what a life... wins an award, no CH and gets to drink for free on the job.
Sounds damn good to me.  ;)

suzy

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by WendyHowe on Mar 25th, 2003, 4:35pm
Huge congratulations. Sommelier of the year. Wow.
Do you ask for a payrise now?

Wendy

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by WendyHowe on Mar 25th, 2003, 5:11pm
So, another dull old awards ceremony then?

Looks a bloody sight more fun than the Oscars.

How's the head?

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 25th, 2003, 7:31pm
I just “called in drunk” to work. (yes, I’m still up, and no, I won’t go away  ;D )

So, back to the business at hand.

WE NEED AN EDITOR: for the “Dances With the Beast—Living With Suicide Headaches” Booklet. (Please note: This is a commitment.)

People will email the Editor with copies (? Highlight-Copy-Paste into Word?) of the posts or threads, that they think best typifies each category (except for jonny’s category-already done-classic. I love you, brother, you are the spark that has propelled me all this time! You are the King.)

EDITORS NOTE: That is not a gratuitous compliment, it is the truth. Please refer to previous SommelierCH posts. (You see what an editor gets to do?)

The Editor will choose the suggestions in each category, and arrange them so that “Our Story” flows.

When you submit your copies to the Editor, label them with the category that they, best, fit in. (Hell, I know that every post can fit into at least 7 different categories, but give it a shot, it will help the Editor).

Who wants this incredibly significant job?

David J.        FUCKENEH!!

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by CathiP on Mar 25th, 2003, 8:07pm
LA Times Headlines:
:o :o :o :o :o :o :o :o :o :o :o :o :o :o :o :o :o :o :o :o :o
Honored Sommelier Ties One on For Entire Night, does WHo-Knows-What With Unidentified female, then gets committed.........
Now, David- how does that look?
;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
cathi

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Not4Hire on Mar 25th, 2003, 9:58pm
hey smelly-ole-wino.....enjoy the fruits ;) of your labor.....congratz!!!

....and remember: 02 is GOOD fer hangovers too......

;D

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by fubar on Mar 26th, 2003, 1:19am
This idea could have legs....  If you actually go through all the work to pitch a show to Montel, why not pitch it to every show after that?  It's not easy for these shows to come up with content every single day.  If you edit a video together with the cluster attack and some information on clusters, we could have a great chance at getting the segment picked up on *some* show.  If Montel picks it up...GREAT.  If not, we make copies and start mailing.

I know I can get excellent video editing done if we have tape.

-Fu

And Dave, you FUCKIN ROCK!!!!!! Congrats on the award!

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by kissmyglass on Mar 26th, 2003, 7:05pm
Congrats Dave!

I'll give you an award for post of the year too.... :o :o.....that was my kind of post!  ;D  Damn, I'm gunna go look at that again.....


Kev C

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Linda_Howell on Mar 26th, 2003, 7:33pm


  Fubar,

        You said you could not watch another clusterhead having a headache.   I hear ya.   BUT........This tape would not be for you or anyone of us.  We all know too well what the fucker looks like.    It's for those in the general public who have the gall to tell us........

  1.  Take 2 aspirin
   2. Can't you just relax?
   3.  You're embarrassing me.
   4.  this is YOUR fault
   5.  WYF is the matter with you ??
   6.  Cluster headaches?   Never herard of them.
   7.  Oh yeah......I get Migraines too.  

              The last thing in the world I want to do is have MY pain exposed.  I Usually go the nearest closet/bathroom/  to be by myself when one hits.  But I am willing to be video-taped if it will be for the cause.


             Linda H  

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Not4Hire on Mar 26th, 2003, 8:16pm

Quote:
 The last thing in the world I want to do is have MY pain exposed.  I Usually go the nearest closet/bathroom/  to be by myself when one hits.  But I am willing to be video-taped if it will be for the cause.


..dats my sister talkin'........the ballsiest gal on the board...IMNotSoHO.....

you go lady......and bless ya ;D ....i wish I had the SAND (and a video camera) to do this......

David J......the eyes of the ClusterWorld are upon ya.....let's make this one happen......

if I can help, lemme know.......Steve(N4H)

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by fubar on Mar 27th, 2003, 1:51pm
Linda,

Yeah, I know it's for a good cause... I just was saying I would find it extremely difficult to watch.  Of course, those who have had the experience will have different reactions to the video tha those who have not.  Don't be suprised if, even when presented with a video, someone still says "It can't really be THAT bad... that person is hamming it up for the camera".  Al in all, this is a great idea, and I hope we can put together an educational show.

-Fu

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 27th, 2003, 8:16pm
My, hard as FUCKENEH nails, family,

Any one who has the guts, should make a tape of an attack. These are SUPPOSED to look like “home movies”, made by ordinary people, not a production company following a script. Hence, they don’t have to be perfect. They don’t have to have perfect lighting, or perfect sound or even perfect focus, just perfect pain.

With several attacks on tape from people around the world, they will see how eerily similar the pain hits us. Then it will NOT BE ABLE TO BE DENIED! No one has used this method to get our message out before, so no one has ever seen it, but I swear to you, one video is worth one million pamphlets! We will shock the Medical community (the tapes used for pre-med education?) and Insurance companies into dealing with us.

After we have the tapes, we burn them onto a Video CD, along with general Cluster information, and distribute them around the world for pennies apice. Any of us can use the CD to give to our doctors or Neurologists, showing them WTF we are going through, streamlining our ability to get the right meds prescribed. We will educate them all.

We will not give up, we will not be denied.
David J.

P.S. Does anyone want to start work on the Message Board Booklet?

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Wendy1 on Mar 27th, 2003, 9:43pm
God Bless You David!

For everyone else, here is the address to write to Montel to tell your (our) story.

http://www.montelshow.com/show/tell.htm

Please email his show.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by catlind on Mar 28th, 2003, 7:39am
David,

First, CONGRATULATIONS on sommelier of the year :)

I agree with everything here about the video.  I don't know if I could have a camera on in the house though, I'd be afraid of breaking it into little plastic bits of chips and glass.  

I have not volunteered to do the booklet because my hands will be more than full with the convention, but I am willing to help in anyway.  

Linda, I think it is awesome that you are willing to be videotaped.  My understanding from the last convention and talking to folks there that you have definitely got attention getting attacks that would open even some CH'ers eyes.

I sincerely hope this pans out :)  It will be a wonderful break for us if we can get a program like Montel doing this for us.  Between some national and international media coverage, and everyone of us telling Dr's and everyone else we know about this demon, we are bound to win :)

Cat

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 28th, 2003, 8:33am
Cat,

Use a "Nanny Cam", planted in a teddy bear. Practicly indistructable.  ;D

David J.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 28th, 2003, 5:08pm
I have a camcorder on a tripod.

Ill hold off meds and give you a full blown 10 for 90 mins if thats what it takes, just got to work up the nerve to do that seeing that I can abort almost every CH.

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by fubar on Mar 28th, 2003, 5:23pm
Holy shit, talk about taking one for the team!  Jonny, fuckeneh bro.

-Fu

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Jill on Mar 30th, 2003, 2:43am
This idea and the folks that are willing to help is sure booming - what a great thing that is. I love it when a group can come together to accomplish a mission that can help so many now and in the future!  :)

I did want to say to all of those that are considering to video tape themselves during a hit to really really consider what they are doing. And I mean that, think about who will see the tape and weigh the outcomes hand in hand before setting up that tape recorder.

I am saying this from personal experience, so it is a true testimate from someone who knows. We videotaped me while I was in the midst of an attack; I was thrashing, banging and crying and it is all on tape.

How do I feel about this?

Before it was done, before the tape was made, I was eager and ready for it to be done. I only thought of who I would be able to help - maybe not directly but in a sense, how the public and medical community would be made aware of what we suffer. Never once did I really consider how I would feel, what I was doing by making this one tape even though I vowed never to actually watch it.

Now that the tape is made, sitting on the living room table just staring at me, I cant help but to wonder what I have done. Though I still believe that the tape has so many beneficial qualities to it, I feel as if I have taped a part of my life that is so personal, so painful and so enormous. When I think about this tape, I feel like I have been running around the neighborhood completely naked - something along those lines where embarrassment sets in.

Now I am not in any way saying that I am backing down from this because it is for the greater good and, in a sense, I feel somewhat brave and tough for making this tape.

I just wanted to share this with anyone and everyone who is considering to tape themselves. This moment of excrutiating pain that we encounter so often is very private and very scary - really consider sharing that with people from across the world, okay?

Jill

PS. I taped myself for the Montel Show or any other show like that but I am extremely weary (and somewhat against) about it being sold to anyone that wants it and I hope and expect that this will be honored. All I can say is imagine doing something extremely private like going through labor, having a colonoscopy and having it up for sale.

What I am saying is a TV show dedicated to educating the public about this (with a host and such) is much different than having a CD and selling it. Make sense? Thanks.  

So who is working on putting the writings together? I got lots.  ;)

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Georgia on Mar 30th, 2003, 2:51am

Quote:
1.  Take 2 aspirin
   2. Can't you just relax?
   3.  You're embarrassing me.
   4.  this is YOUR fault
   5.  WYF is the matter with you ??
   6.  Cluster headaches?   Never herard of them.
   7.  Oh yeah......I get Migraines too


Linda, you forgot one:

8. I had one of those once.

Grrrrrrrrr.........

PEACE AND LOVE,
Georgia

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 30th, 2003, 9:25am
Jill, great, great points.

Now, I will ramble a bit, to everyone.

ANYONE WHO CONTRIBUTES A VIDEO ATTACK, TO OUR CAUSE—WILL HAVE THE FINAL APPROVAL ON HOW IT IS USED!!!  This is my promise to all of you, for anything that I am involved with. Everyone should feel comfortable with their own participation. It doesn’t always HAVE to be for the group, be selfish, do what’s right  for yourself. I am fighting for myself. I am a Clusterhead for life (Is it ever really over?), I want change before my next cycle. But, I know that if I can help myself, many others might benefit.

WE CAN DIGITALLY MASK ANYONE’S FACE ON THEIR VIDEO. You can be as anonymous as you wish. The world will see your pain, but they won’t know that it’s you.

I have no frigging idea, what all you Pacing Headbangers are like. When I get hit big, away from the O2 tank (can you say “work”), and THEY won’t let me have more triptans, I can’t move. I have to tie something around my eyes, so that no light gets in, I sit low to the floor and press my forehead into a wall or solid object. I don’t want to move, I can’t move. The fact that some people’s bodies can actually function and move during the pain, is amazing to me. I truly have no idea what to expect on a video that shows “moving Clusterheads”. In that respect, I am like the General Public (or most of the Medical Community), seeing it for the first time. This will be a major breakthrough. We will win one step at a time.

I  didn’t mean to suggest selling the Video CD’s, rather to use them as a free education tool, sent to Doctors in conjunction with the ad in the AMA Journal (rock don to Electric Avenue). I apologize to Jill, and anyone else who was offended by this suggestion. I will never trivialize our pain.

David J.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Edna on Mar 30th, 2003, 11:49am
David J.......keep up the good work dude!!

Hopefully NO ONE here is offended in any way by what you're doing.

Jill, proud of you, remember what I told you........it's just giving back when you can sweety........and David's idea of your face being bleeped is a good one if you feel kinda weird about it.

Hope everyone else is in agreement......I'd gladly be videoed if I were in cycle.........and everyone could see my face......that'd probably scare them into helping us chers even more!!!!!!!!!!!!!    ;)

Jonny dude!!!!!!!!!!!       gotta say it again sam......you da man!!!!!     but then again, I would never had doubted such a sacrifice be made by you!!  YOU ROCK

pf wishes all,
EDNA

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by don on Mar 30th, 2003, 12:20pm
So thats a Sommelier.

Here I was thinking you were a skinny black guy with 42 kids and hanging out with Sally Struthers.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 30th, 2003, 1:32pm
Don,

LOL.........but............uh....I did hang out with Sally Struthers.  ;D

David J.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 30th, 2003, 1:37pm

on 03/30/03 at 13:32:17, SommelierCH wrote:
Don,

LOL.........but............uh....I did hang out with Sally Struthers.  ;D

David J.


The question of the day is......When you hung with her was it the "Hot days" or the "Pig days"?.......LMAO ;D

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by SommelierCH on Mar 30th, 2003, 2:55pm
..............jonny,

oink

David J.

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 30th, 2003, 3:01pm
David dude, you just made me laugh like all hell which is not a good thing with this hole in my chin.

That is way too fucking funny "Oink".....LMMFAO!!!!!! ;D

Maybe ill post a pic of my hole....LOL

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

Ok, heres me hole.

http://tinyurl.com/8gvt

I got a length of stainless steel pipe in the hydraulic bender under pressure and the safety lets go crashing into my face.....LOL

Like I need more head pain.....Christ!!!!!! ;D

The swelling is the worst part, my damn teeth dont fit right now.....LMMFAO ;D

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by fubar on Mar 30th, 2003, 3:09pm
Jonny said...


Quote:
Maybe ill post a pic of my hole....


Oh my God... this is just too easy.  Nevermind.

-Fu

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by kissmyglass on Mar 30th, 2003, 3:58pm
OH JEEZE...Sorry Jonny  That really sucks!!  You better get some stitches quick....

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 30th, 2003, 4:09pm

on 03/30/03 at 15:58:30, kissmyglass wrote:
OH JEEZE...Sorry Jonny  That really sucks!!  You better get some stitches quick....


Too late dude.......after 24 hours they wont stitch.

No biggie, the only person that will see this scar is the chick riding my mule and by then she will not care if I was the elephant man......LOL

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by cathy on Mar 30th, 2003, 4:29pm
David .....Congratulations....!!!!

Jonny.... :-*...there you go...I've kissed it better now...lol  ;D

Cathy

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 30th, 2003, 4:35pm
Thank you, Cathy.....It feels better already ;D

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by suzy617 on Mar 30th, 2003, 5:10pm

on 03/30/03 at 15:01:51, jonny wrote:
Maybe ill post a pic of my hole....


OK ya got me scared there for a minute.  :o
It kind of looks like a little womens pair of lips stuck under your chin.
sorry for your pain honey, now just be careful nothing gets in your hole.  ;)

suzy





Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 30th, 2003, 5:34pm
Suz,

I think I need to re-coop, mind if i come spend a couple days?

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by don on Mar 30th, 2003, 6:22pm
You could hide a fuckin midget in there!

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by jonny on Mar 30th, 2003, 6:29pm

on 03/30/03 at 18:22:53, don wrote:
You could hide a fuckin midget in there!



I know, fucking thing hurts like all hell. not CH hurt but a steady fuck with me pain, no one make me smile....that will kill me......LOL

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

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by 9erfan on Mar 30th, 2003, 8:19pm

The swelling is the worst part, my damn teeth dont fit right now.....LMMFAO ;D

............................................jonny[/quote]

Geez Jonny!  You finally get some new teef and now you go and screw em up!  That looks like it hurts like hell!  :o

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by 9erfan on Mar 30th, 2003, 8:21pm
ok, i didn't do the "quote" thing right...i better go back and re-read the directions that jonny sent me.

>:(

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by suzy617 on Mar 30th, 2003, 9:10pm

on 03/30/03 at 18:29:24, jonny wrote:
I know, fucking thing hurts like all hell. not CH hurt but a steady fuck with me pain, no one make me smile....that will kill me......LOL

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


See now how can you come over to re-coop if I cant make ya smile?  ;)

suzy

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Jill on Mar 31st, 2003, 12:41pm
Funny because I dont remember typing a post in this thread - it was right after an ER visit and I was realy doped up on diladid. But, hey, it was a pretty good post and I meant it!

Thanks David for clearing that part up about the video. I had a feeling that that was what you meant but you know how things can turn out and I just dont want the video falling into the wrong hands.

I think that doctors being able to see the tape or one like it is a good thing. I know that my doctor was 'blowing' me off in a sense until he saw a full blown attack. Now his eyes are so called open and he is willing to help more than ever before.

Anyways, that said. That is a good idea about the face distortion but I think that Edna is right - it takes away from the affect. I know that I want them to see my face - that way they know that I am a real person, a person just like any of them. I want to them to realize that I could be them, their son or daughter, brother or sister. Then, and only then, will they began to care and want to help us - they have to realize that we are real people who have jobs, families, friends and so on. Make sense?

Also you stated about how you react versus how others react - that is a point that I tried to make before. Everyone fights this beast differently, that is why we need more than one tape. I, for example, can not be told that I am the norm for everyone who suffers from this - we just need more examples. That said, who else will do it?

That is all - everyone seems to be talking a good talk about doing this but then the thread changes and nothing gets done. Talk is good but that is all that it is sometimes - we need action! Had to say it  :-/.

Jill

Title: Re: MONTEL WILLIAMS:  I asked him to help us.
Post by Georgia on Apr 2nd, 2003, 12:12am
just a friendly bump back to the top



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