Sophia3

Morgan, You think the doctors would understand that by now. It's why we feel so lightheaded or brain-fogged. I also explain a feeling where my head feel like it's not attached to my body sensation...like its kind of floating over me, lol. But I don't mention THAT to my doctor but that goes with the vertigo I sometimes get I think. I remember once, reading in a medical book used in the early 60's for medical SCHOOL something like: "Many women often experience what they percieve to be pain during menstruation. But we now know this is simply psychological"...or words to that affect. I was reading this old book for amusement when the doctor was out of the office for two weeks on vacation. I remember him telling us that THEY were taught menstrual cramps and pain 'didn't exist'..though HE always believed the pain was real. But many of his colleagues didn't believe!! Look at how much we have learned of that and much of that was WRONG...not to mention the bizarre endometriosis pain many women get....who would think our innards could travel around but they do. And if this book was written in the 40's or 50's, look at how many women had had PERIODS for CENTURIES and men still didn't have a clue. Kind of scarey. And since even the OI specialist would tell a patient it was anxiety. I wish more docs were like the late Dr. Streeten. He studied dysautonomia for over 40 years and always believed it was REAL. Hope the article helps your doc understand, Morgan.

Julie I totally understand your being a realist. I think I am too. With this illness after so many years of been there, done that, I think many of us, like myself may come off cynical or negative. But it's real. When Dr. Grubb told me I had done all I could be doing with this illness to fight the wheelchair and being TOTALLY bed bound, I felt validate as well. That said, the right gripe, at the right time, to the right PEOPLE SIMULTANEOUSLY, can get big response. About 17 years ago, I lived in a mixed residential/business setting. Some guy opened a 'teen night club'. It was about say, 5 houses away but the loud music was incredible. Elderly people lived all around us and the kids would urinate in the yards and one guy found a couple having SEX under his window!! YIKES. I went nuts in a letter to the police dept, the city council and the mayor. I signed the letter Concerned Citizen out of fear of retaliation. My letter was quoted and used on the front page of our paper. I got calls from many folks, including the mayor two times! After folks investigated and the neighbors backed up all i said, the rowdy night club WAS CLOSED!! All because of one big mouth, who spoke for a dozen or so elderlu families. The doctor who's office we lived above was thrilled with my letters and to this day, knows I was the one who got the ball rolling. I never did disclose my name to the community about it. Sometimes it's nice to do things anonymously. Especially when the end result makes other feel better. So you never know what a simply paper letter can do. I have gotten an email from a celebrity journalist acquaintances and she said DEFINITELY send snail mail. most producers just delete most mail as it fills up their boxes every day. She said since we do indeed, suffer and unusual illness that seems to affect a minority, to gather letters enmass!! My therapist tried to get a magzine journalist to speak with me last year but the journalist (who wrote about obscure illness for Ladies Home Journal and other mags she freelanced in) thought autonomic problems sounded too broad in scope but would be directed at too narrow of a target audience. Its all about demographics these days. I say all of us, of all ages should focus on one show. What could it hurt? Maybe if enough of us howled during the same full moon, lol.

I just got an electronic email from Dateline but I guess they do prefer snail mail. Besides, it does take more energy and makes it taken more seriously. I knew this was true of many shows but wanted to be sure since so many shows have web sites. This was the address they gave me. ~~~ Thank you for your E-Mail to Dateline NBC. Although we cannot write a personal note to each of you, we do print out our messages, look at them and discuss your comments and reaction, and we do sometimes quote your E-Mail on the air in our 'feedback' segment. If your correspondence is in reference to a specific segment, that letter will be forwarded to the segment producer for review. If you have a specific story suggestion please send it to: STORY SUGGESTIONS Dateline NBC 30 Rockefeller Plaza New York, NY 10112

dizzy girl glad you got some relief. I can not imagine having the intense pain of which you speak. There is something about pain close to the brain that can be difficult to deal with . My hair'scalp would hurt but nothing to the extent your situation sounds like. Hope you have a really soft pillow!

http://www.wicfs-me.org/dr.htm This site mentions how Oprah did a show about illnesses that took 'FOREVER to be dx' and CFS was briefly mentioned. The link also mentions a hypotension like problem talked about in the 1930's. I know Ted Koppel is going to retire soon but does anybody remember when a bunch of us wrote him in 1999 to do a show on Dysautonomia? I don't believe any of us heard back but at least many of us tried. You think somebody could at least send a form letter like "thank you for your suggestion." I DO remember getting a letter back from Sen. Ted Kennedy in the early 90's when we did a monster letter writing campaign on CFS. His note even mentioned HE KNEW of some people who suffered from the illness and was a believer in it's severity. That was when I got the CFIDS Chronicle each month by mail and MANY of us wrote the same people at the SAME TIME. I often wonder what show would be best to approach. I know Oprah is powerful and gets many letters, more than her producers can read. How about 60 minutes? OR DATELINE to ask them to Follow up on the mysterious illness they actually mentioned by name. Also, I have heard many producers like hearing via snail mail as opposed to email. Does anybody know if that is true in this day of electronic email. I just remember I couldn't believe I got a response from Kennedy, though I know many aren't a fan of his. But the fact he sent out a form letter with some 'personalized parts to it' amazed me. Course back then, we all did old fashioined mailings. And phone calls. Like what if we all sent letters on the same subject via email AND via snail mail? Just send out the same letter with a stamp every couple of weeks??? I know there is strength in numbers...The squeaky wheel may get the grease but the wheels that roll TOGETHER actually get somewhere!!

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.

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.

Clooney mentioned this problem on Letterman but I missed the first minute of conversation. Also George jokes so much about the situation but it was quite HORRIBLE for him. Clooney's started after a neck injury tore his dura, I think He kept having a runny nose, major "ice cream brain freeze headaches" and memory loss..... and folks thought it was the sniffles. George has had many blood patches and blows them out by doing something physical. When asked how he wa currently doing by Letterman, he said ok but then made a joke about it all. I had a spinal headache years ago from a myleogram and I STILL remember the pain. Those of you who still get them have my sympathies. Anyway, they talk of weird medical problems...now there's another title for a health segment on a TV show. We would fit into that as well. http://www.azcentral.com/community/scottsd...bruner10Z8.html

Dizzy girl, YES on the scalp pain!!! I was ALWAYS a "tender head" when my mom would brush my hair as a kid. I could only use soft brushes...never "traditional hair brushes". Also, having a pony tail for a long time, and then letting the hair down used to hurt. And I NEVER had tight ponytails. But sometimes the scalp would be so sore that just trying to pick up a bunch of hair at once would hurt. I only have that intermittently but a few weeks ago I experienced this. My hair is cut above the shoulders now. I use those medium sized Velcro rollers for my hair. After my hair is dry or barely damp, will put these rollers in for 30 minutes to a few hours if my hair is too damp. I will lie down in bed and surf the net. Well a couple weeks ago, an area close to the top and back of my head was sensitive. AFTER I removed the rollers, I kept thinking I had left a curler in the back of my head (I have left the house a couple times with a small curler at the nape of my neck but that's NOTHER POST!! ha) But I realized, my scalp had that tender feeling. Not really sore at first, but felt like SOMETHING was touching my scalp. So your question makes perfect sense to me unless I am just as weird. But I think it goes along with my sleep problem and fibro. It's part of the allodynia (sp?) where normal touch can be painful. My nails are tender as are my cuticles. I have only worn nail polish once or twice in my 48 years. Just too darn sore to mess with. Plus I could never handle the smell of nail coloring/removing chemicals. Hope you get through this spell soon and get some rest to see if that helps. Good luck.

I found out the DATELINE segment on our illness was in December of 1999. Then I came upon this article about astronauts and OI being a genetic defect. http://spaceresearch.nasa.gov/research_pro...cs_03-2002.html Paragraph from the article.... Prior to the early 1990s, doctors frequently misdiagnosed OI. "I'm sorry to say that 20 years ago I probably told young women who came to see me about this problem . . . [that] they were deconditioned and they needed to get more exercise," says Robertson. "What changed my view was a finding in the early 1990s that cerebral blood flow, blood flow to the brain, fell more in these patients than in normal subjects. Even though the blood pressure was just as high when they stood, their brain blood flow fell when they stood, more than it should. And that's what keyed me in. We used to think if the pressure was okay when you were standing, your brain would do fine. In this group of patients [ones with OI], that proved not to be the case."

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.

dizzygirl A friend sent me the smiley things from another site. I just copy and paste. ALLEGEDLY you can send them in email but even though I follow directions, NONE are showing up in emails I send to myself (before making an idiot and shooting blanks to friends!!) I do not know what I am doing wrong but am getting hand cramps from trying and trying!! SO I give up. Where is a ten year old computer geek when I need one? LOL.

In response to Jan's add explaining jerks....Jerks can also come in the forms of humans...as in YOUR case the "helpers" who have been obviously letting you down!! I do hope you get all the problems ironed out. It is indeed, all a bunch of rubbish. Sorry...couldn't resist the pun on "jerks". I hope you feel better. Keep us updated! Sometimes,even in the animal kingdom, there are jerks.

Thank you, Jan. I appreciate your kind words.

Jan You are an amazing spirit and that is what this life is all about. Finding something when facing adversity to keep one sane and moving. I agree that being creative is good for us an nourishes our soul and spirit. Keep up the inspirational posts, Jan. There are lessons for many of us. Sophia

For any interested...part way down the page it mentions CFS..since so many have this dx and might be interested in this, I am posting this site. http://hippo.findlaw.com/disability.html

Yes! I do believe that is the doctor! Thanks...

Wow! What a &^%$@ day you have had with one problem upon another. First, yes, I get the shakes in my arms..sometimes but not always...somedays, the whole body tremors...miine is adrenaline based because when I hold out my hands, my doctor says the shakes are quick like adrenaline, as opposed to slower shakes like Parkinsons. I can SO RELATE to not having a comfy share. My fibro can't tolerate hard chairs. And the runaround you have gotten from the disability folks that are supposed to "help you" is disgusting. Please do NOT be hard on yourself. The disability folks are NOT HOLD UP THEIR END OF THE BARGAIN. I agee with the previous poster to call whomever you need to get the support you need and DESERVE for your limitations. Sorry you can only get words from the Internet but take a deep breath, rest and be kind to yourself. Then, make a plan of action to talk with the disability people about your university needs and call your doctors about the missing medicine. You are in a horribly frustrating and depressing place right now and not getting what you NEED is adding to your stress. So cry, scream and get it out of your system...then breathe some more....(actually breathe ALL THE TIME!! lol) and then make calls to DEMAND some swift, practical solutions to your needs. Hugs from across the POND and don't take all the mistakes happening around you PERSONALLY. If the disability system is like the one here in this country, they often mean well but there are many hiccups and bumps in the road along the way. Good luck and get lots of rest.

I posted on the Dr. Phil thread about the lack of follow up on 20/20 and Dateline programs from the mid to late 90's. 20/20 just said Chronic Fatigue Syndrome might be cure by Dr. Heffez' neck surgery but wouldn't use the term "dysautonomia". Course Dr. H doesn't pronounce it a cure, just that it may improve some symptoms.... Dateline DID use the term 'Dysautonomia' and did a GREAT first segment about it that was informative and easy to understand. Dateline Profiled, 'Jenny', an optometrist who used to post at NDRF. Does anybody ever hear updates from her? How she was doing? Last I heard, and it's been years, things were iffy for her. She, too, had the controversial surgery by a doc on the east coast, who's name escapes me. Just wondered. Many of us were disappointed that neither show followed thru with an update as both were COMPELLING stories.

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.

Good grief! What an ordeal for Morgan to go through. However, I am not quick to bad mouth a doctor only because we really haven't learned to understand the entire human brain. Anything is possible but I am also of the mindset that some things CAN be brain based yet still be very real physically due to chemical imbalance. But for some docs, it's the chicken or the egg theory. Which came first, trauma or the chemical imbalance or is it another genetic miscoding in one's body. Whatever the true diagnosis, please tell Morgan there is no shame in any illness even if it is partly mental or totally or some quirk overlooked by a medical doctor. Not that I am saying Morgan has it, just that after awhile, I think physical problems DUE AFFECT our psyche!! I say thank goodness they have her events on tape/video and can at least have SOMETHING TO WORK WITH. Though the nurses could've let her rest in between these events, but I digress. SHe must be totally exhausted. I send many positive thoughts and prayers to Morgan to help her seek whatever treatment, therapy she feels she needs. No matter what her journey is and even if she doesn't ever feel like sharing it here, I hope she starts to feel better. Since catecholamines can spurt out erratically with heartbeat and BP changes, almost anything is possible with these ANS problems. Whatever, it seems the doctor does have Morgan's interest at heart, I hope. And I hope you are able to take care of yourself as you take care of Morgan. I hope I haven't offended you with my post but after 15 years of this stuff, I am open to ALL POSSIBILITIES.

http://www.wholehealthmd.com/refshelf/subs...525,747,00.html This side mentions all sorts of meds not to take if you want to try 5htp http://www.advance-health.com/5htp.html This Dr. Weil site is the only one that doesn't mention selling this product http://www.drweil.com/u/QA/QA76842/ I came across a site on Fibro of CFS that mentioned 5 htp and I don't think it sold this supplement....but I could've dreamed that, who knows. I can't find the site now! I am suspect of sites that sell things but have read in a few message boards that htp has at LEAST help with restorative sleep for a handful. Hence my seeking it out.

Joanie I read articles that high doses or even normal doses of 5HTP can cause headaches, nausea, etc. I am going to start with 50mg though some suggest up to 300m for sleep! YIkes. I will try the baby dose and since it affects melatonin, I realize i may have to use this stuff for a couple weeks before taking my klonopin for sleep to see if it may help. At high doses this stuff can cause some liver problems but I am going to try the lower levels. If it can give me RESTFUL sleep with any regularity, I will give it a try. If I find the articles on all the side affects and positives, I will edit this post. Let's face it, some of us need baby doses of meds and some folks have higher tolerances. I figure for $4, it's worth my giving it a trial basis. Also the fact this has to be taken on an empty stomach to work effectively will make me aware of my evening snacks. Also one can feel side effects more easily if taken w/o food I think. Good luck with your daughter!

This stuff is alleged to help get improved restorative sleep. Anybody tried it? I read on some site about CFS and Fibro it 'can help' many people. I found a small supply for $4 online to try. It should help me decide as that will last a couple of weeks. It's a pre-curser to L-tryptopan which was taken off the market and only available by prescription now from what I read. And what was taken off the market many years ago was a tainted batch in Japan. Shame. This is about the only thing I haven't tried for sleep. Some other things online are very pricey for fatigue and are basically "natural" stimulants....ginseng, ashwaganda, etc. Women shouldn't take ginseng anyway. So though skeptical, I figure the price wasn't outrageous and I read about it on a couple sites that WERE NOT SELLING IT which makes me a little hopeful. Just wondered if anybody else had tried it?

Joanie I stumbled across this site as I thought it may mention my ex sleep doc, Martin Scharf, PhD. But the site is so LONG I haven't come across it yet., lol Anyway, it's interesting and talks about the controversial hype of GHB and the good aspects. http://www.ceri.com/report.htm CBS evening news did a story on my doctor back in the 90's how GHB was CHANGING THE LIVES OF NARCOLEPTIC PATIENTS. I was on the study for fibro and insomnia (odd a medicine can help narcolepsy and insomnia) CBS twisted the positive story by starting and ending the segment with a father over his comatose daughter. The daughter had gone to a rave club and taken the "home made street version of GHB" as opposed to the very safe pharmaceutical version. Though my then doc looked sincere and intelligent and narcolepsy sufferers were GRATEFUL to be able to function from the drug, CBS left the unenlightened with the impression Dr. Scharf was trying to legalize a 'date rape' drug. It really made us all angry but that's the media for you. Distort the facts. But one patient with Fibro had walked with a cane for years and the GHB helped her walk within two weeks and wash her car and even go horseback riding a month after use. Sadly, I had "no such miracle" so we are all different. What helps one, does'nt help another. I also think the more autonomic severity we have, the tougher it is to get help from drugs because our own body chemistry can vary from moment to moment. Its all complicated but we all have to try diet, exercise and or medications that we deem safe for our own personal situation. Good luck. But after 15 years and many meds, some of us are cynical I am afraid.