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OCsunshine
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Hey folks,

I was just looking on www.drphil.com and it says one of his upcoming shows is going to be about extreme disorders. There is a link (on the homepage) saying something like "do you want to be on the show? do you have an extreme disorder?" So I clicked on that and sent a short email saying how Orthostatic Intolerance is a physical disorder that keeps people from actually -standing upright- or sometimes even -sitting- upright at all. Hey, that is 'extreme' to me, don't you think?

Anyway, just a suggestion... if you want to go to the website and write a very short, intelligent-sounding email saying how there are so many people out there with OI (NMH, POTS, etc...) and it would be amazing to have this disability discussed on the show.

Just a thought....

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Great Idea!!!

I'm on it :DB)

I sent the following message. If any of you want to steal it as a template: be my guest.

To whom this may concern,

I have been diagnosed with Orthostatic Intolerance (OI). This is a disorder of the autonomic nervous system that prevents me from standing, or even from sitting for long periods. The symptoms include tachycardia (fast heart beat), hypotension (low blood pressure) and dizziness when upright. This condition has affected all aspects of my life. I am unable to attend school full time, unable to work, and sometimes unable to get out of bed for days.

There are many people who suffer from this disorder (almost 500,000) yet it remains unknown. By accepting me to appear on your show, you would allow this disease the exposure it deserves, and would help to dispel any myths associated with it (such as it is precipitated by anxiety, or it is a result of laziness). Please allow me the opportunity to educate people about this debilitating condition.

Sincerely,

Lauren Mitchell

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Lauren,

That was a FANTASTIC email. Good job! *High Five* to you!!

We do need to get this story out there... so many medical stories are out there on CNN and news shows every day (autism comes to mind, it has just exploded in the news community). We need OI to be one of those stories, I feel so strongly about that.

I just crave to someday say to someone "yeah, well I have Neurally Mediated Hypotension" and they say "Oh my goodness! I know all about that!" Instead of looking at me like I just told them I have "ookeeepookeedokeylokey syndrome" and they obviously think I have lost my mind. Hrmph.

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Oh, Dizzy, thanks for asking...

It really hasn't been that excruciating the past two and a half weeks. I started Neurontin almost 2 weeks ago, and I haven't seen any change since then. (The pain lessened before I started on that med, so I can't really contributed it to the med helping.)

My GP told me to stay on this low dose of Neurontin until I see the neurologist in Nov 8th.

I do feel a heck of a lot sleepier lately, though. Don't know if it's because I'm tired because we just moved (stressful!) or if it's due to the Neurontin. Hhhmmm. I have always gotten 'sick' and have 'symptom flare-ups' but I rarely feel "sleepy" like this, know what I mean?

I am not totally convinced that I have Trigeminal Neuralgia (what my GP said he thinks I have). I don't have sharp electrical pains, it's more like a deep throbbing. And there is no trigger like chewing, biting, or something touching my face. It just comes and goes whenever it wants to. (I have just gained this info on TN from websites... so I am just comparing my symptoms to what I have read online about TN.)

Anyway, I'll keep you all updated after I see the neurologist. Thanks for remembering and asking about it!!

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Oooooh, neurontin. I was on that for a year for my fibro... it may not happen to you, but the drug can cause hypotension and exacerbate any existing hypotension, so keep an eye on your bloodpressure. Also, the nerurontin made me soooooooooooo sleepy, I couldn't drive, or even walk a straight line when I took it. I hope it goes better for you.

You cracked me up with your earlier post "ookeeepookeedokeylokey syndrome" (LOL) :D

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So that happened to you, too? With the neurontin?

Well I did just call my GP and left a message with a nurse there. I told her how I was feeling sleepy, and that is just unusual for me. (I know, I have Chronic Fatigue Syndrome, isn't it ironic that I rarely feel "sleepy??" When I do too much, I just feel sick- nausea, lightheadedness... but rarely ever sleepy.)

Anyway, I'm waiting for my doc to get back to me to tell me to go off the med or try something different... who knows...

(Sorry to everyone else, we got off topic on this post...)

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For thos people SEVERELY DISABLED and unable to fly, as opposed to APPEARING on the show, you need to be ask to be on the show via remote from your local TV station or a video crew.

To jetset in this day and age of LONG LINES at airports and danger of high altitudes in planes for some of us, the point to drive home is MANY OF US ARE SEMI HOUSE BOUND.

The most 'extreme people' need to be on the show to pontificate in an astute manner of specificities, the DAILY LIMITS of our lives with this illness.

Sadly, dysautonomia is not a sexy enough word which is why it was NEVER USED on 20/20 years ago with the CFS and "possible" neck surgery "cure"

with Dr. Heffez. They did not see dysautonomia as a "sexy enough word" and that is a quote from the then producer of that show.

So, good luck wording an email that grabs the attention of Dr. Phil.

Only if one wanted to put into details the difficulty of standing still and the impossiblities of that for many, and to tie it in with our sex lives or inability to have one or ENJOY one , due to anorgasmia, might they have us on the show.

Sadly, if it bleeds it leads on the news shows. And I am sure they are looking for freaky illnesses.

We need somebody willing to INVESTIGATE the problem of INVISIBLE CHRONIC ilnesses and their severe limitations, as we all know with us, you can't judge a book by it's cover. I can only imagine the EXTREME illnesses they may cover...*sigh*

Good luck to all who email Dr. Phil. But judging one what I read his topics are, I am afraid our illness may go ignored unless somebody can really writh a pithy email. Let me know if ANY OF YOU get a response from Dr. Phil's staff.

I never watch his show. Too exploitive on subjects I am not interested in.

I DO WISH that Dateline would've done a follow up on THEIR show of DYSAUTONOMIA but they never did an update. They did a great job of explaining the inability to stand or sit up but sadly left viewers with the impression that "surgery is the cure"....and we all know that is a tiny percentage help by the controversial "chiari surgeries". Gosh, both shows were in the late 90's and neither had an update....20/20 OR Dateline. Too bad but I guess the segment did not draw enough viewers or the SEVERITY of the illness was not driven home since both people worked that were on the shows. Not to take away from those of you who work...I am just saying that is how the illness was represented before on the aforementioned shows.

Sadly, if we lay in bed and ATE OURSELVES into oblivion to become obese and need our houses torn down to remove us from our beds, due to use weighing 800 lbs, then this illness may get attention. This example happened with a local guy years ago for the Jerry Springer show...before Jerry got so perverted. That obese young man has since died...but Springer did try to help him.

Yikes.

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i can't seem to find the previous topic to link, but the "extreme disorders" topic from the dr. phil page was brought up once before. i'm by no means trying to discourage any attempts to educate others about dysautonomia, but the "extreme disorders" topic is referring to psychiatric disorders.

the description reads "Have you, or someone you know, been diagnosed with an EXTREME disorder such as: schizophrenia, multiple or severe personality disorder, agoraphobia, tourettes, narcissism or any other antisocial disorders? Are you hearing voices, believe someone is out to get you, or paranoid someone is controlling you? Please contact us with your story."

just wanted to clarify what this particular topic is looking for for the show...

:D melissa

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ok...i couldn't find it b/c i was getting mixed up. the previous discussion was re: a topic for oprah on "strange disorders". so while this dr. phil topic does appear to be new & doesn't specifically say that it must be psychological, the fact that ALL of the listed examples are such definitely makes it appear that that is what they're looking for....

sorry for any confusion

:D me

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Yes I do know that many folks are housebound and/or bedridden. I have been there. I do understand that.

I wasn't suggesting that we all get on the show, I know that won't happen (reality check here). I know many people can't travel or fly b/c of this illness. Obviously. I just thought it would be good to have as many emails go to them as possible so, even if they don't choose us, they can't avoid us totally.

Even if it gets ONE of the staff members to mention to a friend "Hey, I have seen a lot of requests for a topic on this thing called dysautanomia... I wonder what that's all about..." and the word just spreads to a few more people... so what? At least we tried as much as we could.

And Sunfish, yes I have seen Oprah's topic about "strange disorders" and I clicked on it and immediately knew that I didn't want OI to be in that category! This is not what they are looking for.

The Dr Phil topic listed other illnesses that are also psychiatric, but "narcolepsy" was also on the list, so that involves neurological disorders.

I just figured it wouldn't hurt to send an email saying "Hi, we are STILL here, and we STILL need our story told" with any chance we get.

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Guest Julia59

Sophia-----------Maybe I should sit and eat potato chips until my gallbladder bursts---then maybe Dr. Phil will ask way I did something so extreme.

I'll say because I was craving salt due to dysautonomia. OK we all know this is a poor example----but you are right, it's pretty sad what gets the attention of the media.

I don't know how much of us we need to put some common sense into the medical community to realize how serious this disorder has become, and what it has done to the lives of so many people.

When dizzygirl came to Toledo to see Dr. Grubb and told me about her 200bpm heart rate and how those nimrods docs in her town just didn't get it----it just shook me up to no end. You can bet your sweet behind that if one of those docs heart rates got up that high they would cry like a little girl for someone to make it go away.

I have sent so many letters to various media---it's obvious they don't care unless something extreme enough happens..... I don't know about you, but i've seen some pretty extreme things happen to a lot of us.........

So many bizarre things have happened to me---that I can barely believe it myself----I am my own skeptic.

Don't these idiots know that we are in disbelief ourselves----why would we go through such efforts to get help so we can feel better if this wasn't real?

I wrote the Dr. Phil show...............despite what the media is interested in---I continue to try....we all have to keep trying---even if they don't care, someone will one day come out of the dark an open their eyes.

That's all-----i'm done rambling----i'm going to eat some chips----but baked because I have gallbladder issues------------------------------------- :(

Julie :0)

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Melissa, you were correct...I just went to Dr. Phil site and this is what is says..

Are You Dealing With An Extreme Disorder?Have you, or someone you know, been diagnosed with an EXTREME disorder such as: schizophrenia, multiple or severe personality disorder, agoraphobia, tourettes, narcissism or any other antisocial disorders? Are you hearing voices, believe someone is out to get you, or paranoid someone is controlling you? Please contact us with your story.

!!!!!!!!!!

Yes, you were right, this IS from the Dr. Phil show and all are PSYCHIATRIC disorders...sigh...or Anti SOCIAL disorders...well, some of us DON'T get out much but not by choice! lol....I didn't see Narcolepsy listed though that is a sleep disorder.

Gosh, I think Jane Pauley was still on Dateline when they did the study on Dysautonomia several years back!! Too late to ask for a follow up on that show I guess.

I mention being on Dr. Phil show 'by remote' only because some shows do that...Larry King, Hannity and Colmes, Bill O'Reilly,...even Oprah does some off camera video...at least I used to know some guys that did that kind of work for her 10 years ago. I also know a local talk show guy who is on TV a lot from a local TV station remote cause he doesn't have time to fly to New York at the last minute. It really is amazing what they can do long distance nowadays.

I remember a few years ago Oprah talked of odd illnesses and Chronic fatigue was mentioned briefly and a member of the audience told her story on video but was present for the taping. But there were no details given to the illness.

It's sad how freak illnesses (not that I am calling Mental Illness freak, but sadly, the world often does!!) get the attention.

I still can't get over Springer going from being a great newscaster and commentary guy to the CIRCUS FREAK SHOW he has become!! It's such a disgrace. He used to be a great local personality and before that a great mayor...except for the time he paid for a hooker with a check!!! Now THERE is a story worthy of his own show...Provided it's still on the air. Is he STILL on TV? I know he has a radio show now.

But "invisible chronic illness" is the last of the challenges to get across to the masses. But it needs to be done.

Larry King even devoted an HOUR to CFS about 14 years ago. If Larry King can devote an hour to Anna Nicole Smith...I mean come on. Maybe we could all go on TV and drop the "F-bomb" and then we would be replayed on the news 24/7 repeated our rude behavior because no doctor listened to us in the early years.....Just kidding. But we have all seen the sports replays of coaches flipping out and cussing and the words beeped out....a classic Tommy Lasorda tirade comes to mind!!

Oprah or Larry king need to do a show titled "Gee, but YOU LOOK so good, how can you POSSIBLY be sick??"

That's what we all live with. And that would cover MS, CFS, FM, O.I. and lots of physical illnesses.

Sorry to make this post so long...I AM prolific today...and have PMS !?!? I need to edit this thing later.

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I do think that all of us who are interested/able should try to find a way to get the word out about POTS. This illness is too common (compared to other, well known illnesses like Lou Gehrig's disease or tourettes) and too disabling to be unknown.

Has anyone tried to write their senators? Does anyone on the site know someone in television/news/journalism?

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Guest Julia59

When I talked to my senators office about my SSDI----and the bogus report one of thier "appointed" docs wrote about me----he said that he has heard of dysautonomai/POTS---and is very aware of the difficulties we face.

That was about it---he didn't go on any further...........

Sophia, Dr. Heffez did tell me that havng surgery definately did not mean my POTS/CFS would improve-----he said we could only hope that it might stop the progression, as the ANS has a close connection to the upper cervical spine and the lower part of the brain. The majority of people with Chiari/cervical spine stenosis/or hypoplastic posterior fossa with compression on the brain stem will have some form of dysautonomia or CFS.

However, most of the damage done by long term compression on any of these area's of the body is usually permanent. Dr. Heffez said most likely he could only stop the progression of injury to the spinal cord-or brain stem area, thus possibly stopping any secondary problems from getting worse, such as CFS/POTS ect.

He tried to make this more clear, but unfortunately the media did what they wanted to do---and things got a bit twisted----as Dr. Heffez kept reiterating that this WAS NOT A CURE------and that it might possibly relieve some ANS/CFS symptoms---or keep them from getting worse.

It is truly sad how the media can take control of the minds of so many people.

It is also sad how we have to word things to get the attention of the media.

How about;

Dysautonomia------->Woman throws gatorade in Doctors face due to his excessive ignorance........................

Just a thought.....

Julie :0)

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Julie

Yes, I remember hearing afterwards from Dorothy how Dr. H was upset that they kept using the word CURE as opposed to possible cure in some cases. The man featured on 20/20 w/Dorothy had an extraordinary recover from his CFs...I wish they did a follow up on him as well. He went to that other grumpy looking doctor on 20/20 whose name I forget....he also is the one to set up the protocol for testing I think...You probably know that doctors name.

Now Gatorade loves athletes..and sponsors NASCAR for instance. I wish some autonomic person with a connection to NASCAR could show Gatorade the benefit to learning of our illness. Many drivers become dehydrated during races and lose 10lbs or up to 10% of their body in fluids. At that point, their concentration and reflexes can slow down so they are thrown water bottles during pit stops.

When Tony Stewart won the Indy Brickyard race, he was so orthostatic intolerant, he had to LAY ON a WALL for an Interview with a cloth on his head!! Granted it was VERY HOT, he had lost a lot of fluids, was THRILLED with his win, but he WAS orthostatic intolerant!!

I wish Dr. Gupta from CNN had been THERE to check BP and HR on Tony. Gupta did a special on CNN about NASCAR and it's extreme effects on the body. G forces and all of that. That would've been a great time to explain Stewarts Temporary case of O.I.

I was so hoping Tony would have another win during the hot weather and be too weak and lightheaded to stand. I would've had to send him a letter about his experience!? That was the FIRST TIME I had ever seen a winning athlete INTERVIEWED by ALan Bestwick lying flat on his back.

If ONLY some enlightened broadcaster would've known the term, "orthostatic intolerance"!!! We missed our moment.

I don't know any astronauts either but maybe somebody can come up with an idea to get somebody's attention.

3.gif

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Last year, there was a Dutch astronaut in space. They did experiments on him and let him have a really spectacular TTT (that was in hospital before he left) He also did bp readings while in space. I'm trying to contact him to talk to him to hear about his experiences in space and after landing. He is a doctor as well, so I think it would be really interesting to talk to him. Unfortunately I'm not (yet) succeeding in contacting him.

Corina ;)

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Rachel,

Thank you for sharing the Dr. Phil stuff with us as well as taking the time and energy to write to his show. I expected you to receive only support here for that, and I am sorry that did not happen.

Thank you to the others of you Lauren (what a well-written email! yeah!) and Steph and all of you who also wrote.

I am bummed that it may have been for psych disorders only...but we can still hope that the message gets through! (Rachel, I know you've been bedridden and I'm waving to you from my bed saying...yeah!)

This thread got me upset b/c Rachel's intentions were all good.

I understand that many of us feel frustrated that our 'ookeypookey' illness has not gotten more funding, more media attention etc. I had to use that word!

Unfortunately, there are many other illnesses that are either perceived the same way as ours, or that were at one time seen as 'ookeypookey' and are now getting the attention they deserve--such as MS, Autism, Breast cancer, AIDS (Anatomy of Illness by Susan Sontag is a good one on this).

Someday, I truly believe that OI/Dysautonomia will get attention like other diseases and illnesses.

I truly believe that this will happen and we are on the way to making it happen. If we continue to put the information out there, to speak up for ourselves, to create communities like DINET and NDRF, etc. more and more people will hear about this illness and eventually try to understand it.

One of the things that makes this illness meaningful to me is hoping that someone, somwhere, someday will have to suffer less b/c of what I have been through. That a doctor will take them seriously, who previously did not take this illness seriously. That what my doctor learns from my case will help someone else. That my experiences that I share with my friends here will help ease another person's suffering.

When I started my blog and posted the link to that as well as a link to DINET in my email signature, I never anticipated that many people would read it. But, my friends are nuts about my blog. My friends and family have been reading it, waiting for updates, and reading the DINET information pages on POTS.

I see through them that this illness has changed both them and me so deeply. I haven't gotten the media's attention or a senator or anything like that...but, I think that little steps matter...every little step helps. I know my friends would never make a snide comment about 'looking good' or it 'beingin my head' to me or anyone else b/c of my experiences. They will be better stewards of their own health. And more compassionate to others with disabilities.

I have struggled so much with being 'enough', but for now, this is the best I can do given my limitations.

I think that if enough of us keep emailing the media (as I know many of you have done in the past) it will catch someone...it will happen...we will get the word out in 'bigger' ways...

Julie has written tons of letters, Steph has, many have and I think these things matter so much...

Thank you Rachel and others who keep speaking up and spreading the word.

Emily

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Corina

That sounds fascinating. Hope you get in contact with that astronaut.

It really is amazing how space can help study illnesses.

I thought in one of the articles I linked recently, that some Russian astronauts are taken of the space craft on stretchers...while others are ok. but the astronauts in the US have to be sharp mentally to get back into our atmosphere..but my PMS Swiss Cheese mind can't remember why?!

Amazing how some tolerate re-entry better than others..makes you wonder what the exact difference is....still, it's all interesting.

Then again, why do some of us have bad spells, some of of progress, yet others can still work with meds, diet and rest? It's all interesting.

Also, what used to WORK for me years ago (diet, exercise, B12 shots) hasn't done squat lately...so what is difference? My PERImenopause? Still regular but at age 48 my hormones are all over. So it's a complex illness for sure.

And why can we PUSH some days and other times can not? I have a few days out of the entire month where I can PUSH myself. I wish I had phlebot to follow us around 24/7 to check hormones and neurotransmitters.

I have been stuck in bed with the lapt top a lot the last 48 hours hence my suddenly frequent postings....Just feeling puny even for O.I.

I wonder if any female astronauts go into space on their period??? lol

**edit** yes they do go into space! Found this as soon as I asked this question.

~~

14. Do female astronauts get their period in space?

Yes, female astronauts get their period in space just like they do on Earth, and no menstrual problems have been associated with living in microgravity. In the early years of human spaceflight, some worried that women would not have their periods safely in microgravity. They thought that microgravity might cause menstrual fluid to travel upwards into the body instead of out of it ? also called retrograde menstrual flow. This would mean that blood would flow from the uterine cavity into the fallopian tubes and then into the pelvis and abdomen, causing pain and increasing the risk for endometriosis. While this has not been observed in past space missions, more studies are needed to better understand how the body works and reacts to microgravity.

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Thank you Lauren, I appreciate the support...

Your email to Dr. Phil was so well done--articulate, to the point, etc. I was super-impressed! ;) (Sometimes I used to wonder why I had my degree if I was just going to get sick and not be able to work...but man, it sure does come in handy for writing and trying to understand this crazy illness of ours!)

Emily

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This may sound strange but i actually like that people dont know about what i have ... there are no stigmas attached or prior assumptions so they actually listen to my explanation.

When i told people i had CFS i could tell most people just assumed i was lazy. CFS has the worst stigmas attached to it.... yet i suppose some people out there are more understanding due to the attention its been given. Its a bit of a double edged sword.

However, good luck with it ;)

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