OCsunshine

I started birth control pills many years ago and they have helped tremendously. I was on desogen (a very strong form of bc) and started taking the pill for 10 weeks at a time so i didnt have a period as often. It's wonderful for me! I am currently on the patch (which is not Ortho-Tri... it's called Ortho Evra) and though the media has been scaring people lately, the FDA has not issued any extra warnings about it, just the regular warnings that all Birth Control meds give out. It gets into my body in a more steady stream and I just love it love it. I don't have to worry about 'the pill' being in my stomach if I have IBS or am throwing up or anything. The patch goes right into your blood stream. Anyway, I've been on BC for years and have found it amazingly successful- my blood volume has increased, my blood pressure has slightly increased (a good thing) and I'm not as anemic anymore since I have less periods. I hope you have a pleasant experience with your new med. Don't worry too much... just keep a daily journal so you can notice any change in symptoms.

You mean when other people wake up with lines on their face, they don't last for several hours?? I thought everyone's did.. eerrr... actually I had never really thought about it before. I often have them and they last for hours. Is this really a sign of low blood volume? I mean, I have been aware that I have blood volume, so I'm not surprised... but I had just never considered the face-lines as a "symptom." Interesting...

Ever since I was diagnosed with CFIDS/NMH (1994), I have had digestive problems. We chalked it up to IBS and CFIDS symptoms. A polyp was seen on my gall bladder, but the docs didn't think it was progressing and didn't think the polyp was too blame. A few years ago, I had GB attacks (worst feeling ever) and that's when my docs decided to take out my GB. Funny thing was, when they removed it, they saw no polyp. Go figure... Right after my GB was removed, I couldnt eat anything without getting sick. It was ridiculous. A few months later I found out about "Questran" and started taking that almost every day and now it's 100% certain that if I take Questran before a meal, I won't get sick. Makes eating out at restaurants possible!! Anyway, GB gone = digestive problems much better here.

Yep, I have definite light-problems. My pupils are always huge, so I'm majorly sensitive to sunlight, flourescent light, bright light.. anything besides moonlight. Too much light will cause a migraine, so I also wear my sunglasses year-round.

There is a gene for POTS? Specifically for POTS? Or all types of OI? I dont get it... why haven't I heard about this? HUH???

Lisa, I, too, want to know about some genetic research! I mean that really could be the key to figuring this out. My mom has always been a fainter, but didn't know what she had until -I- was diagnosed 11 years ago. My aunt has the same story, only more severe than my mom. I am more severe than both of them. My grandmother, too, has always had low BP. Seems to worsen with each generation in my family... I wish we could take these clumps of families and have some genetic research done. Looking forward to hearing some responses on this strand... -Rachel

I saw a new neurologist today. He didn't have my medical history or anything, so at first we just discussed my face pain (the possible trigeminal neuralgia). He did a long exam on me ("touch your nose" and "watch my finger" and "walk this way" etc etc). While he finished up he said, "I don't know if you realize this yet, but your autonomic nervous system is severely off-set." Obviously I know that, but I baited him and asked him why he thought so. He said that first of all, my PUPILS are HUGE. I do know that, too (I get comments by store clerks, people at bus stops... you name it... I am told often that my pupils are huge. Weird, huh?). So the neurologist said that's the same part of the brain that controls the heart rate, blood pressure, and skin temperature... so I must be having some strange struggles with those things. Well shoot- those are my top 3 problems right there. I was just rather impressed that he told ME all of this about myself just from examining me before I even told HIM! So anyway... I was glad to have another doc that was very knowledgable about NMH/dysautonomia, and he was very kind and personable. Whew! When I told him my 'story' and about Hopkins and Dr Rowe there and everything, this new neurologist explained the nervous system and the problems I have the best he could and also said "I know that Dr Rowe knows more about this than I do, but I am just telling you what I know." You have to admire a doctor that will go ahead and say he doesn't actually 'know it all.' :-P So it was an interesting visit. We couldn't really get to the bottom of my face pain, it is indeed a mystery. The wisdom teeth surgery is a real question mark though, since that was fairly recent. The pain isn't so severe now, so I'm going to leave it alone and not take any more meds to try to heal it. I did get another Rx in case it flares up and I want to try something else, though. Just thought I would update you....

You have the leg pain, too!!! I just posted a couple of days ago (I think it was titled "Shin Pain") and I don't think I got any responses. I figured no one else here has that kind of pain... I have never met anyone that experience this specific kind. I totally understand what you mean... it's not a muscle problem, but a BONE pain. It feels as if my shin bones are going to crack in half. It feels what I think shin splints might feel like, but I'm no runner!!! I just don't understand it. I have had x-rays of my legs, but they look "Normal" of course. Just don't understand why these pains happen... they are REALLY debilitating!! Sympathizing with you, Rachel

Ever since I have fallen ill with NMH and CFIDS, I have had this horrible trouble with "shin pains." It's impossible to explain, but I will try: It isn't a constant pain through life, but it might happen twice a month or once a month. It can start in the middle of a busy day or I can wake up with them in the middle of the night. Awful "shin pains." Usually they throb and throb and the only thing that relieves the pain is pressure- I wrap them up tightly in ACE bandages. Sometimes I'll have my husband sit on my shins and that will help slightly (weird, I know). The pains can last for an hour or maybe 12 hours. If I'm desperate, I will take Darvocet or something to ease the pain and it does help. Yesterday I had another attack. My shins gradually started to ache as I was sewing and sorting through fabrics. Within the next hour, they weren't throbbing as usual but I could NOT walk another step. I wound up in bed by 5:00pm and was stuck there the rest of the night because anytime I put my foot down and put weight on it, it was an excruciating pain into my shin bone. (This pain is in the front of my shin, like the bone... not in the back of the shin like a charlie horse.) If I was laying down I was all right, as long as I didn't flex my foot or point my toes too much, then the pain returned again. So last night was different than the usual 'shin pain' but still, does anyone have this problem? My doctors have been baffled and pretty much threw their hands up in the air years ago. I had x-rays and of course my legs look normal to them. I thought only athletes got shin splints. Obviously I don't run or anything like that. Any ideas?

Good job on speaking up and also asking for breaks when you needed them- that might even help your case (not hiding the illness). We are behind you 100%, let us know how it goes. Good for you for putting up a fight, we're proud of you!

thanks for sharing exactly how that works. that is really interesting. i know i totally would have considered that when i first fell ill, but my docs were very hesitant to do that to a 13 year old, i guess. i'm so glad that works for you and provides you with such help and relief, that is really a great thing that you have set up there! a big improvement over going to the hospital so often for a hookup! thanks again for sharing and explaining it all.

I don't have an answer for you, I'm just letting you know I am eagerly waiting responses. When I am in a 'crash' I can spend months on end in bed not being able to get up. The IV drips really help, but it's not worth it to me to spend 12 hours in the ER with all of the germs and chaos and then feel good for one day after the drip, and spend a few days recovering from the stress of the ER! So I would love to know about people that have IV access at home. HOW do you do it yourself? I mean, I surely can't believe that people are putting them in themselves. Do you have a permanent needle in there? Oohh that would make me sick (I have a really weak stomach when it comes to that stuff). Looking forward to responses.....

Exercise is definitely a challenge. I have found out (the hard way) that if I do an aerobic workout that gets my heart rate up, it's like my heart doesn't re-set itself or something. I just get very, very sick from exercising. But it also depends on my general well-being. I can do NO exercise when I'm in a crash. If I'm feeling so-so, sometimes I can get away with pilates (that's very low paced and it allows me to lay horizontally while doing the movements), and when I am doing very well I have found success with a water aerobics class. I'm not sure how my body allows me to do water aerobics, it's the first time (since falling ill 11 years ago) that I have been okay with getting my heart rate up. I guess it's because I'm in a "good" patch now and am feeling "okay" so I can do some workout. In the water I haven't felt light-headed, the water somehow keeps me stabilized and it also causes less pain- no impact b/c my feet don't even touch the pool floor. The water temperature might also help my body temperature to be controlled. I don't recommend it... I'm just saying it's been working for me lately. If you're getting very very sick doing aerobic exercises for goodness SAKE don't do more! I would definitely take it down a notch. Take slow walks. Don't worry about getting your heart rate up for a technical "aerobic workout" just give your body movement and slowly work up some muscle tone. That's just my two cents... listen to your body for sure.

Oh yes, a major migraine sufferer right here. *Waves hand in the air* Mine last for about 24-36 hours, I have to lay in a quiet and completely dark room. Severe pain. I pack my head in ice (literally) and often end up vomitting because the pain is so intense. Recovery takes a few days. I don't know if my NMH causes the migraines specifically, but I have a CFIDS diagnosis and that is listed as a major symptom (along with a thousand other things).

I remember hearing or reading (years ago) that there was a 'theory' that a certain disorder was manifested as CFIDS (note: I am only talking about Chronic Fatigue Syndrome here, not dysautonomia) in females and it was manifested as ADHD in males. Of course that obviously isn't completely true (if true at all). Don't throw tomatoes at me, because I'm not saying it's MY theory. I just vaguely remember hearing that a few years ago... one of those random things that stuck in my head. On a side note, when I am coming out of a "crash" I have sometimes gone on methylphendiate (ritalin) to boost my energy and get my body moving so I can get the muscles working again and get my body in gear. So, the meds work on opposite on me than they should for a person with ADHD. (But that's no surprise b/c most meds work opposite on me.) I think I am getting off-topic, I don't know... sorry about this one...

Yep, I really like the idea! If someone made and sold those clear rubber bracelet things or anything like that, I'd buy it! I think it would really spark some interest and some questions (which is the whole point). Cool idea, good thinking.

When I start to faint, everything goes black (lose my vision) and I gradually just "disappear." At first, even though I can't see anything, I can still hear. I feel my body fall to the floor and have no control of what's happening. If I am laid flat (by someone nearby helping me), then the blood will come back to my head and I will get my hearing back first and then my vision returns. If people try to sit me up or keep me upright (REALLY dumb), then I will just stay unconscious and don't have any awareness or presence or anything... until I am laid flat so the blood returns. My warning sign is the vision loss. Sometimes I get very, very hot and sweaty, too. I usually have enough time to throw my body to a horizontal position (on the couch or bed) before I go completely out and fall down and hurt myself.

I think that, in some cases, there is a definite genetic link here. I think that very often, the disease doesn't really 'show itself' until triggered by a virus. I have very severe NMH (Neurally Mediated Hypotension). I fell ill and become diagnosed when I was 13 years old (11 years ago). These terms and this whole lifestyle was all very new to us... it was just overwhelming to learn about this illness as I dealt with it! As I was studied at Hopkins, my mom was brought into the clinic. She didn't think anything was wrong with her. She thought it was COMPLETELY NORMAL to not be able to stand in line at the movies, or to stand upright talking to someone for a few minutes. She was always trying to sit down, would bend down to tie her shoes, would shuffle around trying to get the blood circulating. Growing up she was known as "Kathy the Fainter" but in those times people didn't really go to doctors. She just grew up thinking that EVERYone was that way!!! She didn't give it a second thought until I became ill and couldn't sit upright without blacking out. Then all of the pieces of the puzzle started to fit... My aunt (mom's sister) is also a fainter. Happens all the time, she's just been known to take naps at her office because she's overwhelmed with exhaustion, and if she stands up too long she'll black out. My grandmother (my mom's mom and my aunt's mom) has always had very low blood pressure, but not with any problems. It seems that this blood pressure disorders gets more extreme with every generation (at least in our family's case). Scary.

Well it sounds like "blue" already has a number of causes associated with it. Mulit-color might work. Somebody mentioned puzzle pieces- I do know that those are part of the "autism" symbol. I have a magnetic ribbon on the back of my truck- it's a blue ribbon and it has primary colored puzzle pieces inside the ribbon. It's for Autism Awareness. I have also seen the same Autism ones (puzzle pieces) but with a yellow background/ribbon, I think. Okay about the "dysautonomia" word... I can figure out how to pronounce it and how to spell it, but I have never HEARD it said so I don't know which syllable to put the emphasis on. Is it DYSautonomia? Or dysAUtonomia or what? Help please. :-P

The only thing I'm familiar with that's remotely close is "CFIDS Awareness Day" (which is Chronic Fatigue Immune Dysfunction Syndrome). That's in May, and the color is blue. BUT it's not only for CFIDS, that "blue" is for all Immune Disorders (AIDS and everything else). They are all lumped together. I would -LOVE- to have a special color ribbon for OI (you guys keep saying "dysautonomia" and that is SO hard to spell, and I have never even heard the work spoken before... I don't know how to pronounce it, help!! I am only familiar with the terms "NMH" and "OI")!!

Most people think beta blockers are used to "lower" blood pressure. As I understand it, beta blockers are used to "regulate" blood pressure. This means they can have different/opposite effects on different people. I take a beta blocker (atenolol) specifically for the purpose of -raising- my blood pressure. My BP is normally 60/40 without the meds. Hopkins started me on a beta blocker over a decade ago and as I increased the dose, my BP increased to a safer level (about 95/60). So you are taking a beta blocker to lower your blood pressure? I am really confused. I'm sorry to ask such an obvious question (this is directed towards the entire audience here), but do you guys struggle with low AND high blood pressure? Or is it the combo of the two (like spiking really high and then dropping crazy low?). I don't really understand... I have a good understanding of my diagnosis (Neurally Mediated Hypotension), which is that, upon standing or sitting upright, my blood drops into my feet and therefore my blood pressure drops drastically in that moment, and I faint (to put it very simply). I guess I don't really understand POTS and the other diagnoses. I'm sorry for asking such a dumb question... I have been wondering about it for a while, though. I read the main info page about dysautonomia in general, but it didn't really answer my question. Sorry, guess I got off topic here...!!! Just trying to understand all of the types of OI, I guess you could say! ;-)

I would think that just the OI/POTS itself would cause paleness. When I'm lightheaded, I know my BP is low, and I can't really stand up... I am totally pale. I just always thought it was the blood dropping into my hands and feet (happens right away with me on the TTT). My feet and hands turn bright purple, my face gets totally pale. No blood is going up to my brain/head/face... hence the NMH/NCS.

Was it Dr Weingart? Hopkins?

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.

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...)