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        New Message Board Archives >> 2004 Posts >> Letter to Oprah Winfrey Show
        
(Message started by: Carl_D on Aug 28^th, 2004, 12:33am)

Title: Letter to Oprah Winfrey Show
Post by Carl_D on Aug 28^th, 2004, 12:33am

Submitted to the Oprah Winfrey Show.

I suffer from a very rare and debilitating disorder that has changed the course of my life. At 17 I began having headaches that were horrible and by nature, would last about an hour and occur 1 or 2 times a day. When they returned a couple of years later, they were torturous! As many as 12 times a day everyday they recurred. The majority of the pain rests in the eye and the temple, but on one side of the head. They are called "Cluster headaches" and are the rarest, and by far the "most excruciating form of pain known to mankind" according to the New England Journal of Medicine. They are also known as the "Suicide Headache," as some sufferers have taken their own lives to end the pain.
It is also the most misunderstood medical condition. This is why I would like to petition the Oprah Winfrey show to do a show on Cluster Headaches, and the devastating impact it has on so many lives around the world. More information can be found on this topic at www.clusterheadaches.com and www.clusterheadaches.org.
September of 2004 marks my 17th year of having Clusters, and have been chronic with them the last 5 1/2 years. In that time I have learned alot about this disorder, and can provide any further information you may need on Cluster Headache.
Sincerely,
Carl Daniels

I'm worn out on what looks like will be another sleepless night after only having a total of 4 hours sleep since awakening on Monday. Just sent this letter a few minutes ago. Have written to Oprah in the past, as have alot of people. But you never know when they will give in, and if they did a show, or even a segment on cluster headaches - the whole world will know.

Peace,
Carl D

P.S. - Remember: The sqeaky wheel gets the grease. If you want to write Oprah to petition her to do a show go to...
boards.oprah.com
and click on the submit show ideas link.

Title: Re: Letter to Oprah Winfrey Show
Post by Lizzie2 on Aug 28^th, 2004, 1:46am

Carl,

There was an article written in one of the past editions of "O Magazine" -- Oprah's magazine...about a woman with clusters, chronic daily headache , and migraine. I can dig up the link and post it for you if you want. I got pointed in the direction of the article because of the fact that my aunt was the associate publisher of Oprah magazine. She knows Oprah personally!! I have tried to contact Oprah, using the fact that my aunt was associate publisher, but I didn't get anywhere! (darn) At any rate, my aunt just left her job there for another job. But...I still try to contact Oprah from time to time!! ;)

Lizzie :)

Title: Re: Letter to Oprah Winfrey Show
Post by Gator on Aug 28^th, 2004, 3:15am

I have also approached her and many others via e-mail and never received as much as a "Thank you for your suggestion" or a "Screw off and take you idea with you."

Maybe with Oprah, we should approach it in a manner that makes it look like women are getting slighted and therefore doomed to suffer needlessly because of some sexist myth that WDGCH. I know no woman here has ever been misdiagnosed because of that myth, right? ;;D LOL

Ladies, e-mail me your story of your years of being undiagnosed and then misdiagnosed and the suffering it caused you. It would be especially nice to be able to write it up that soon after being properly diagnosed, a suitable treatment was found that helped you deal with CH. If any of you have had that experience I especially want to hear form you. E-mail address is: mnjday@brightok.net

It just seems like a story a women's tv show or magazine would jump on. Maybe we can get it out to more than just Oprah. Seems the media might be a little more sympathetic to a woman's needless suffering. Please don't take this comment as me being sexist. I am just trying to look for that angle that might help here. The end result will be the same - coverage for all of us.

Gator

Title: Re: Letter to Oprah Winfrey Show
Post by vig on Aug 28^th, 2004, 9:06am

speaking of this, where's Sommelier?

Title: Re: Letter to Oprah Winfrey Show
Post by crazy_mj on Aug 28^th, 2004, 10:29am

I would love to assist, but I wasn't denied proper diagnosis or treatment due to me being female, just that the doctor I was seeing was a complete and total jackass. :-/

Title: Re: Letter to Oprah Winfrey Show
Post by Lizzie2 on Aug 28^th, 2004, 10:37am

http://www.oprah.com/health/omag/health_omag_200309_pain.jhtml

There's the magazine article. I know it wont' be well-received here because it focuses on the fact that she has chronic daily migraine, but the message is a good one at any rate for anyone living in chronic pain. I have chronic daily migraine, too...as do several other members here, so I've been able to relate to that part of the article quite well. When I wrote to Oprah, it was a few months after this article was published. Good luck!

Lizzie :)

Title: Re: Letter to Oprah Winfrey Show
Post by Jeepgun on Aug 28^th, 2004, 10:47am

I'm with you, Gator. I've written so many letter to so many newspapers, TV shows, and medical journals, and no one ever bothers to write back. Every letter has been flatly ignored. FUCK 'EM ALL!!! I am SOOO fed up with these slaves to mediocrity, and the "Don't cause me any extra effort," mentality that is so pervasive among people in the media. Fuckers... >:( :'( :-X

Title: Re: Letter to Oprah Winfrey Show
Post by Jonny on Aug 28^th, 2004, 10:52am

on 08/28/04 at 10:47:20, Jeepgun wrote:

FUCK 'EM ALL!!! Fuckers...

FUCKENEH!!!!

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

Title: Re: Letter to Oprah Winfrey Show
Post by Kevin_M on Aug 28^th, 2004, 12:29pm

on 08/28/04 at 00:33:51, Carl_D wrote:

Submitted to the Oprah Winfrey Show.

I suffer from a very rare and debilitating disorder that has changed the course of my life. At 17 I began having headaches

Carl, I know it probably wouldn't make a difference, but anyway, once I got to the word "headache" I gave it the old ho hum. Using headache right at the beginning takes out the interest to see later it is a cluster headache, they scan immense amount of letters.
Yes, the fact it is a cluster headache puts it into a different realm of affliction than a headache, but it is not in the public interest enough perhaps to want to know about them. There is nothing to say about them but despairing news, I don't see much hand clapping going on, except for a big hand at the end for the people who suffer with them. She probably wouldn't show Chuck's hit because of the disturbing content of the clip, therefore words alone would be difficult to put it in its proper context. The audience may not take a "headache" as a serious affliction or an interesting topic of discussion because of the way they view the word "headache". I guess though, they'd be very glad they don't get them, if they saw films, which wouldn't happen.
Everyone knows the difficulty describing clusters with words to other non-sufferers and how the reaction always pisses many off.

Kevin M

Title: Re: Letter to Oprah Winfrey Show
Post by PittsburghJoe on Aug 28^th, 2004, 12:37pm

I propose that, if Oprah and others continue to ignore our letters, that we send them a message like this:

Dear Sir or Madam:

FUCK YOU, YOU FUCKIN FUCK!

Sincerely,
Me

Title: Re: Letter to Oprah Winfrey Show
Post by Racer1_NC on Aug 28^th, 2004, 12:42pm

on 08/28/04 at 12:37:23, PittsburghJoe wrote:

I propose that, if Oprah and others continue to ignore our letters, that we send them a message like this:

Dear Sir or Madam:

FUCK YOU, YOU FUCKIN FUCK!

Sincerely,
Me

I pretty much do that when her show comes on......as I am changing the channel. ;;D

Bill

Title: Re: Letter to Oprah Winfrey Show
Post by Jonny on Aug 28^th, 2004, 12:43pm

Oprah is the negro woman from the south and shes not keeping it real!

Title: Re: Letter to Oprah Winfrey Show
Post by Gator on Aug 28^th, 2004, 1:34pm

on 08/28/04 at 09:06:49, vig wrote:

speaking of this, where's Sommelier?

I'm sorry. I guess it hasn't been mentioned that I have been asked to take over for him. Forgive me for not mentioning it sooner. Been getting hit kind of hard again lately. I guess it has made me just a bit addle-brained. This is why I was asking specifically for the ladies' stories, especially those who were misdiagnosed and who had success at treating once the proper diagnosis had been made. Like I said before, looking for that angle.

Since Sommelier just disappeared and took all the info with him, I am having to start from scratch with the target e-mail/letter program. Nothing worse than re-inventing the wheel, but in this case I don't have much of a choice. I am currently working on different drafts of target letters to be approved by the powers the be over at OUCH. I am also cultivating snail mail and e-mail addresses of people and organizations to target. Once everything is in place, I expect to be putting up target letters here and at the OUCH board and asking for participation.

Please be patient with me. Any input or suggestions would be greatly appreciated.

Gator

Title: Re: Letter to Oprah Winfrey Show
Post by Jeepgun on Aug 28^th, 2004, 3:47pm

I would just like to say that I think Oprah Winfrey is a babe. That is all.

Title: Re: Letter to Oprah Winfrey Show
Post by don on Aug 28^th, 2004, 5:31pm

Quote:

Please be patient with me.

Fuck you fuckin fuckin fuck fuckin fuck fuck!

I WANT EM NOW!

I have a headache.

Love
don

Title: Re: Letter to Oprah Winfrey Show
Post by Charlie on Aug 28^th, 2004, 6:58pm

If you're going write a letter to these people...or to most any business; keep it short. Two or three short paragraphs works better. Trust me.

Charlie

Title: Re: Letter to Oprah Winfrey Show
Post by Tiannia on Aug 30^th, 2004, 3:26pm

Gator -

I would love to be abel to help you, but the neuro who finally said that he honestly thought I had clusters (as well as another type of HA that was triggering some of those said clusters) I can no longer see cause of insurance. I still dont have a Viable working preventative and and just praying that i can get through until December.

Sorry hun, dont mean to sound bitter, but I am so fucking tired of hearing that "well it sure sounds like cluster, but your a woman so it cant be" or, "Well, what do you expect us to do about it?"

PM me if you really want the details, I will start at the beginning, but I am very tired and really rather scared atm cause I thnk the Beast is finding a way to eat through Imitrex. Cause 4 times this WE trex did not abort. That really scares me cause that is ALL I have right now. Granted I am not useing full shots, cause I am trying to ration but still. It scares the fuck out of me. :'(

PF Wishes

You know Carl. I think that your letter was great. It would be wonderful, if someone could get our story out.

PS: does anyone have that link to the IHS or what ever the fuck it was called that broke down the symptoms and diagnosis guidelines. I know htat Gator had one but you could not print and then someone posted a link to a printabel one. I would really really appreciate it.

-Tia

Sorry about the spelling. Fighting a K6 or so right now and praying that it does not get worse.

Title: Re: Letter to Oprah Winfrey Show
Post by IndianaJohn on Aug 30^th, 2004, 11:04pm

Vibes and prayers for you Tia...Hope you start feeling better....

Title: Re: Letter to Oprah Winfrey Show
Post by cootie on Aug 31^st, 2004, 12:12am

Doesn't Oprah mostly do uppity stories of tragidy like someone's cadilac they just bought has a faulty door handle that sticks ? Myself I think some of those talk shows hosts make a mockery of the people they are doin stories on. And with human nature we love to see how miserable they really are. I have a girlfreind that has been on TWO talk shows......she's on one in October. Locks of Love I think they call it where they do makeovers and give the hair they cut to be made into wigs. Can't remember if it is Maury or Jerry Springer. But it airs in October. My girlfriend will be the one with all the tatts...she used to do tatt shows all over the USA and been on some magazine covers. Her entire family recieved a make over. Guess they told them they had a chance to win a new Harley and all sorts of cash ect but only thing they got was the hotel room while filming......5-star hotel tho I mite add. Maybe you'd have a better chance gettin on one of them 'it's not MY baby' episodes and then tell yer story of CH and how it made you do it. That seems to be the big show stopper these days.............sheesh !!! If it's not mine it must be yurs Pam

My freind had about 36 inches cut off her hair and it is still to her waist.....it was below her knees.

Title: Re: Letter to Oprah Winfrey Show
Post by Jeepgun on Aug 31^st, 2004, 6:43am

Locks Of Love is a very worthwhile program. People donate their hair and it is made into wigs for people who have lost their hair to chemotherapy.