pearsjon

i was 16 when i had my 1st child. i did not know i had d/a at that time. i took the glucose test you described and i passed out instantly. the next thing i remember is waking up in the docs private office on his nap bed. yes they have beds to nap on . had two more children after that and once i told my obst/gyno what had happened previously, i never had to take another one. i suppose none of them wanted a repeat of the face plant. don't know if this helps, but i thought you should know. and apparently i have had d/a all my life. btw, i was treated as a gestational diabetic, with every child since the pass out, just in case, since they did not want a repeat of the 1st incidence. hope all goes well!!!!!!!!!!!!!!!!!! i have also come up low on my osmo-calculated (i have no idea waht that means either)

i also see dr. thompson and he is wonderful. but am curious as to which er you went to and what the docs name was. everytime i have been to west florida hospital the ER doc is an ***&%$#^*. just curious so if i have to go again, maybe i can request ot be seen by that doc. thanks

i sympathize w/ u on the singing. i was always in choir, gigs of some sort,and anytime someone will listen. i was good,too. like u this is a really difficult thing 4 me to deal with. i push it and do it anyway, which leads to u know where. i also had the losing the voice w/ the swallowing. i can say that the swallowing difficulty, has waxed and waned. but the voice change is just like u describe. all of the sudden i don't recognize my own voice. asked doc, he said u r really exhausted at that point, even if i don't feel it. body saying lie down.LOL like i could really do that. he sent me to have endoscopy done ,but i had already done that b4 so i skipped it. i can swallow some times and i swear i can't breathe. my b/f looks at me like iam nuts and worried. i am literally gasping 4 air. son't understand it, don't know why, so i chalk it up to dys. but it is a veryscary thing to have happen. i also "choke" alot. like i was drinking my water yesterday and i started choking b4 i even swallowed (at that point i could not swallow) so i ened up spitting the water eeverywhere, scaring my boyfreind who thought i was vomitting agian . the part about having something stuck in ur throat *****. it lasted for me a long time. it is still there just not as bad. i haven't found anything that helps. i hope u have success in finding out what it is and that it is not what ur grandmother had. i seem to live in a preverbial course of choking no breath and swallowing probs, along with a constant sinus thing. been coughing, blowing and hacking up brown and yellow junk for 4 mths now. i don't know why, chest x-ray was clear. go figure. not being able to sing is the pits. i am sorry u r dealing with that too. i tried humming, same reaction as singing. just another ur not alone post. i wish i could help more.

ask whomever u r speaking with to describe the time they were the most scared or nervous in their lives to u. and then say that sensation u felt then and just described to me is how I FEEL day in and day out. pretty much will stop them in their tracks so to speak. at least it has worked for me. they r usually amazed i am functioning at all, especially once they have just relived that feeling for themselves. once again my weird view.

mvdula, i am not sure if this will help u or not, but i am going to say it anyway. i am the opposite of what u describe as far as normal bp&hr. it seems to me that when i am put on something to control them, and i take measurements they appear to be in normal range and meds r working. BUT, when the readings r "normal" i am at my worst physically ( it took 4 times 4 me to spell that). in other words when i am SUPPOSED to be normal i feel the worst. and when i am running higher diastolics and hr's i can mange fairly well, even w/o meds. so i don't take any (except xanax to sleep). there r mild forms of pots that can be produced from stressors. not to say that u don't have pots, could just be amilder form than some of us. which is good better chance of recovery. or like me u have "adjusted" to what u put down as not that significant measurements of bp&hr. but when stressed u go out of control. apparently, we all get high spikes in hr when frightened or scared, but i don't believe to the point of which u r speaking. i may be totally off here but food for thought. and if i am wrong about this someone will definitely correct me. hope u find ur answers.

welcome rooster, u have described me so well i think u have been looking in my windows. my only difference from u is that it takes a day or so for me to get to the point of sleeping. i often am very confused when by myself. i make up all kinds of new words. i transpose words, numbers. walk around in circles wondering what the heck i am doing. forget things i should not forget. stumble on words. horrible at recalling words. math was never a good subject for me but now i have trouble with simple multiplication. of course not all the time but more than i want to admit. i have terrible tremors, often when i drive. i try not to drive when i know i am bad. i have lived in the same small town my entire life. 3 years ago i could've lost our local police i knew the roads so well. sweating and freezing just blows my mind. but u will find good help here. and yes maryfw, i slur all the time. people r surprised when i tell them i haven't had a drink in over 10 years. they could swear i am drunk right at that moment. i am often been accused of having vodka instead of water in my glass. it has been bad enough that they have actually smelled my glass. life is funny. to think i used to do this to myself for a buzz. now i would gladly give the "buzz" to someone else. it is a good tool for teaching your children the consequences of drinking, by "example" per se.

thanks flop, i don't think it was a pacemaker for my dad. i'm lucky i got anything out of him at all. med probs r like secretive in my family. i have no idea why. he said that his heart would pound so hard that it would lift him off the bed. and they rewired it. that is all i know. i have my ovaries but have had hysterectomy, so i worry about the early menopause. my cholesterol is high, and LDL is low, but they won't do anything with it cuz i have so many muscular probs they can't dx. cramping and pain, tenderness and such. i get what your saying and thanks again for taking the time. i am not going to worry about it. i was only concerned cuz my diastolic tends to be over 85 most of the time and showing irregular heartbeats. and my muscles start to ache.

flop if i did that formula u suggested my co would be 8.4. i have history of heart probs in my family and have never had a complete cardio work up. they have slways assumed that my low bp waas a definitive sign that nothing could be wrong w/me and i was one of the lucky ones in the fact that i would have a very long life. it bothers me that it has never been a thought to anyone. grandfather had angina and probably dys (he passed in '87), my father has had 3 heart attacks and one when he was younger than i.(37) father has had to have electrical system (in body) rewired. can or does ttt or pots rule the others out? stuppid question from stupid women. but nether less i AM concerned. doc says its just pots, but i am also listed as ncs and oi, an am assuming once again that this is why they call me dysautonomic.

flop, he said (ans) doc that if i took away your pressures you would be at close to a 60% stroke volume. and went on to say that my 60% and some other normal persons 60% were different. like on a 20 oz drink my 60% is totally different than normal persons 60%. i could be wrong about the whole thing, you talk math and my brain shuts down. i think he said it cuz i mentioned my diastolic pressure was high when i was awaken from sleep with charlie horse. i have a more signifgcant change in diastolic than systolic. and hr is through the roof. he made it sound like a bad thing. he also said that he can't believe that i haven't just fell out. and if i keep it up (no med thing) i would end up just falling out. if you like i can send you the last month of bp's. i am not having any luck with rx's and maybe he was trying to convince me to try another one, which i did and now am very sick. so no more meds 4 me. this may not make sense but my bp and hr where ok yesterday and i was sick as a dog. could it be possible that my body is more comfortable out of the norm than in the norm. since i have been out of the norm for awhile? sounds crazy, but i do better with only xanax and a high hr. get me in the normal range and i am ready to go to er. i have always been like that. whatever something is supposed to do my body has the opposite reaction. such as a crisis. i have always done better under stress than most. which should not be the case with dys right? but the more stress in my life the better i function. maybe i am an adrenaline junkie and just never put the 2 togeher. sorry just realized i was typing out loud. thanks for reading and responding.

it has been suggested that i have a 60% stroke volume. i am completely lost. can anyone translate for me and tell me why this would be of concern?! thanks

so i am guessing that it is a dys thing to not recognize the pain. or have a delayed reaction.? this is new to me. i gave birth to 2 kids naturally and always thought i had a high threshold to pain too. then dys t-bones me and i feel like a big wuss now. thanks for validation.

i am having an issue. not anything bad, just wanted to check to see if i was the lone duck. i am not feeling pain as much anymore. mainly, restricted to my arms. let me explain. i have burnt myself twice now from the oven. i sense the initial contact and continue on with my business. it isn't till like maybe an hour or so later that i actually "feel" pain from the burn and realize that i have one. not sure i am making this clear. i thought the 1st time it was just me forgetting, but now i know that is not the case.

what about people like me, who have the primary form of dys. they can't find anything wrong with me but dys. i am not sure if i was born with this. i always had car sickness as a child. had a strange leg swelling and paralysis about age 9 or 10, no one could explain. multiple ear infections as a kid. that's about it. nothing major. i don't see many people on any of the forums who don't have something else going on pre dys like me. i feel alone in the fact that it is only real dx so far. not in the way that i want something else, dys is enough thank you very much. but more in the sense thatit is hard to compare what helps and what doesn;t when it's just dys. i think i am loosing what i am trying to say. not typing out like it sounds in my head. am i making any sense?

i get what i call - recurrent sinusitis. of course it really isn't cuz it goes away without any help from me. but it sure does freak me out. and it happens often and can last like u said a few min or a day or so. but goes as quick as it comes. i may be way off here, but thats my experience with facial pain.

thin, break easily. i have what they call flare nails. white and red at nail bed. cuticle overgrowth. spots of white in them my thumb nails always have the luna at the bottom. basically, they are bad and always have been

dg, i was not dx either before any of my three births. i wanted to specify for you that i checked epidural, but that was only with the last child i had at 30. the 1st birth was at 16 and natural, i believe it was more mild pots then. 2cd child was natural also (age 18 at birth) i know i had it then for sure, but still milder than now. it began getting worse for me in my early 20's. during pregnancy i felt great,of course after initial morning sickness went away. never felt better during pregnancy. thought u could use that clarification, for proper research. i forgot to tell you i had significant blood loss during last pregnancy. not at birth, during pregnancy. pm, me if u really want specifics.

i was told from dys doc belching is a warning of syncope. bloating that can be pots too. i bloat every time i eat. but i am not saying don't try the other things suggested. that was my understanding.

i 2cd sushi.we have the same story. he is also my dr. and he is the best.

i just want to know what designer u were wearing? and did u thank the academy and god for the winning? LOL this is great. thanks dg.

i have this every once in awhile. but it is more like muscle fatigue for me also. but my k+ is fine. but i am verry stiff when i use muscles in repetitive moments as well. thank god it doesn't happen that often.

blood tests indicated both deficiancy's. B12 and folate. and yes, ajw, that is exactly what i am reffering to my leg. nueropathy is something iknow is going on. but they won't say that for sure. i had a 5min leg cramp last night that is making today a ruff day for me. this is what i am worried about i have been showing this for over 10yrs. with no proper treament, so is this damage permanant. cuz that's what i am reading. they are not telling me if it is pernicious or anything, just that it is anemia. i think iwill call dys doc tommorrow and find out the truth. he usually will tell me. i just think someone should tell me a little better explanation then hey your B12 and oh by the way you are folate defficant also. thanks for the help. oh yeah and another bone scan is in order. i am not sure why as they didn't pay any attention the dark spots(which indicate lack of blood flow) on the last one. guess where the lack of blood flow showed up?! if you said in the middle of the back you are correct. if u said in the legs u r correct. if u said in the joints u r correct. the bright spots were in the leg (left side) but were spread out diffusely throughout calf. unremarkable.LOL just think they weren't looking for dark spots only white and then it was so diffuse in the calf it was hard to differentiate. my calf was shining in the film. they also told me i wasn't swollen at the time. i wish u all could see the film, i am so obviously swolllen to tell me i wasn't was nothing more than a bold face lie.

am i understanding the research right? is both an indecate of the megolblastic form? i have read several times, but dys brain sometimes i still don't get it. when they called me about B12 prob they neglected to tell me there was a folate prob, also. i now have to take folgard on top of B12 shots. i am concerned about it,cuz of the neglect to tell me b4 or when they first called. i am also concerned cuz if i do understand all info i have read, coupled with the bone pain since the start of B12. i could be looking at a serious prob. the B12 level was borderline, but folate was low. i have been showing on blood tests for over 10yrs large red blood cells with MCV and MCH were low. this shows the aenmia all this time,but never caught.( i know yall are shocked). so my concern with coupling of everything i am a little nervous. should i be pressing this issue a ittle more? i know they ruled out sclerderma and sprue ana and a few other things. should i not worry and wait to see if supplementation is going to work? i see rhuemy again in three months. could it totally make pots better? does this mean that the nuero damage in my leg is permanent? that what i think i understood, since it has not been addressed for so many years? i am probably worrying about nothing. she judt said it is a form of anemia, not what kind. i am freakin a little.

i could not take this med, which for some reason really trips my doc out. but the reason i couldn't was erratic bp and hr. one minute i was super high and the next super low. on the lowest dose my bp/hr went really low. we upped the dose and my bp and hr sky rocketed. i tried it three different times. same thing each time. i hope you have better luck. some have had great success, just not me.

i love the achohol reference. this may get edited but this pots stuff reminds me of my drug days when i was waaaayy younger. good times. i always did like the drunk feel but never did like the acholhol taste much. do yall get the waves of the floor moving under your feet? or the words move on the puter pr book? i think that's why i feel so stupid sometimes,cuz i can't seem to make things stay still for me. i'm not dizzy either. llike sushi i'm just off when it comes to aim. i am a smoker( i know bad girl) i couldn;t tell u how many times i have lit the cig in the middle. doc wants me to quit, but right now it is my crutch that seems to give me some peace. kinda like a security blanket. sushi, i'm just going to tell them to take me to jail now, i'll never pass. straight line, lol. sorry eeryone amoungst all this research and dys i try to find humor, albeit weird, still the funny things about this dys stuff keeps me going. everyone have a HAPPY HOLIDAYS!!!!!!!!!!!!!!!!

taht i don't run in to it? i haven't found one yet. this prob of not walking straight is really gettingon my nerves. please tell me yall have found some you don't run into.