pearsjon

i have narrow pulse pressure when standing under 20-35. i am hypovolemic. when i sit it goes to 50 and above. a min ago it was 67.

i forgot about being held at gunpoint and my ex raping me. my point i was trying to make before i was interupted was that if trauma/stressors were the only cause or one of the causes of dysautonomia, there are a ton of people out there that have had far worse trauma/stressors than any of us could even imagine. why don't they have dys? which leads me back to the conclusion that with have something w/i us that has makes us suseptible to this crap. we will more than likely find out ( well our kids will) that it is more likely something that we always had and just progressively gotten worse or better (in some cases). or that aging has something to do with when we feel this stuff. and children having this makes that point even more of a reality to me. just my 2 cents.

born w/ it. always car sick- pain sensitivity was high as child- hyperactive child very rarely slept-parents called me center of attention-sexual abuse-emotional abuse-beaten by 1st boyfriend-pregnant at 16-beaten severely by 1st husband-2cd child at 18-developed cervical cancer during that pregnancy- cervical laser surgery after birth of 2cd child- anesthiia (sp) almost killed me for that surgery- both children natural child birth no drugs of any sort-emotionally and physicallly abused by 2cnd huband-also found out after divorce he abused my children sexually and emotionaly (put him in jail for that)-when told parents of sex abuse at home was kicked out and not believed-several car accidents as child-2 as adult-total loss of everything twice, once from fire, once from hurricane-always had gi probs-no anxiety till later in life- sang all the time for contests and church-3rd child epidural i could go on and on with traumas and stressors that happened in my life, but the only prob i have w/ that line of thinking is- if caused by that, then how come i always managed to pick up the pieces all by myself and do the right thing for me and my children? noone counseled me after any of these traumas/stresssors. i did it i waited 10 yrs to put that SOB in prison for what he did to my children. i am the one who learned to cope after being thrown out because my step brother molested me. i am the one who dealt w/ the beatings from said ex's. i have always been independent. this was a for sure low blood volume issue for me that i was probably born w/. and my dys doc agrees. i want to ask how many have OI,POTS and NCS? this would lead me to believe that a definite dysfunction. besides the fact that my sis,dad, son,daughter,and cousin all show signs of dys, but none has been dx but me.

between the test interpretation of test, i was going to guess, but have bills right here so i can give you exactly what it cost me and i have BCBS. $2698.00 for test. $1888.60 hospital charge. $686.00 to read it. less ins. my actual charges equal-$2105.54 that's my patient responsibility part. wish i good have given you better news. if you need it , you need it.

about 3-4 years ago before dx i would have the same feeling as if my insides were going to fall out of me. thank goodness it hasn't happened in a while. i remember it was when i was standing alot. are you ,OI? i am, that's why i ask. us dysies with OI have to watch that over doing it. of course, i am the kettle calling the pot black. i can give it just don't heed it myself. take a good long rest and drink plenty of water. i know duh. like you don't know that. hey, i get rip roarin mad when i can't do what i want cause of this stuff. hang in there. and i hope you do start to feel better!!!!!!!!!!

thanks everyone. i just thought that i had remembered reading that somewhere, but not unusual for me to get things confused. i did not [anic or anything, just went WOOOOOOW i appreciate the fact that i am not alone. todd: i don't think you are the only one who has been to hospital over them. and i do get the arm and jaw thing.been like that for a couple of days now.

that we were not supposed to feel our irregular heartbeats. am i wrong? cause i felt it this morn as it registered on bp machine. thanks in advance.

no, thank you suzy. as i have often felt this was just me, myself and i. i made bratwurst the other night and turned them w/my hands. totally freks my 8 yr old out and then she tried which scared me. and then that brought a whole host of ?'s from her, i can hardly answer. except just cause mommy can do it doesn't mean you can. and mae, you made perfect sense to me ,too. i have delayed pots so why not delayed sensation. another thing to ask dys doc about. you know he has to love it when i come in.

mae, a person who thinks like me. how wonderful. i second everythign you said and don't believe you are that far off. cause if all of this is vitamin defficiency and auto immune related then they really do know the cuses and are not testing for them. why wouldn;t they? along w/ let's stand and take your vitals how about lets test your vitamin levels and see if they are wacky. there is no money in it for the docs as far as vitamins go. no rx needed, even though they were throwing that around for a few years. you can't tell me that if docs want to make vitamins an rx that they don;t know why or when they should be tested and the what for. ditto ,mae, i don't think your nuts. just more open minded.

in a nutshell, my point was that yes medical science has the horse in the barn but they can't make him run. and rammie i have done mor e research than i care to admit. i have tried every regimen out there, by the cdocs themselves and by self medicating from years of not knowing what was wrong. i have had this probalby longer than mirriam , since birth according my highly trained dys doc, who is on the list for doc in this forum. if they can't make the horse run-i guess we just sit in the barn. cause that's what i have been doing for so many years w/ and w/o dys doc care. plus you have to remember that every doc has to publish something, it's how they get jobs and brownie points, so to speak. in other words, it is no different than any other degree- noone knows your grade just that you have a degree. so do you know if these published journals are from an "A" student or a "D" student. i just tend not to believe everything i read. call me crazy, i'm used to it. and your right, they have made the very brilliant notion that maybe we need to exercise instead of laying in bed alll the time (since the 50's), sure did take a ton of women dying to even figure that out though. was that thru research, or thru common sense? oh yeah, and they know (or at least some do) that it is not psychological. but if they believed themselves, why is there still graduates coming out w/ no knowledge of this syndrome? plus i postulate again, that if there was an answer,which there may be ,they are gonna bleed us dry before they telll us what it is. cynical, h** yeah. after , what i have been through. in other words, if astronauts have dysautonomia, when they come back from space, and they use tilt training to cure it, or do they? and if they can then why can't we have the same treament? i can understand, if it's secondary to something else, but primary, i should just be able to hope on the tilt table fro a couple of months and feel great right? i love my doc, and thank god for him everyday, but he can't help himself w/ this whatever you c=want to call it, so how can they help me. \ you guys, kepp trying to find an answer, as for me and my house, we willl just live as if i don't have it. even though i have a 30 degree tempature difference in one arm. just another day in dys. and i hope and do see some trying to help us. but docs don't truly want to cure, as then they would have no patients. and i am not including all docs, let me state that very clear, there are some really good ones, just so hard to find. and i can't help but to wonder why?

ok, sunfish. it just seemed as if you were telling me specificallly that that was a normal e.f. which i knew. i brought it up more for the fact that other than the weight loss, no one had a clue why the weight loss. and knowing that you are correct most are found on routine ultrasounds, mine was not for a routine, doc knew he would find something (stones) but instead found polyps (tumors, lesions). you are correct in the fact that i should have probably mentioned that i was a symptomatic patient not asymptomatic. but thanks for saying that to me, and sorry you had to deal w/ the pm's. didn;t want everyone to run out and have it checked or get worried. but i can see how that would happen and don't want to make it harder for you. i am a big girl and can give an apology as much as i can except one. sorry i tend to be very passionate and sometimes i can go overboard. but hey that s who i am. love me.

i have to disagree on one point brought up by firewatcher, We all also have OTHER DISORDERS (like EDS or thyroid diseases) that modify our POTS, just as POTS modifies other disorders (thinking of the sleep disorders/narcolepsy poll.) , see i am one of the few here that after over 13yrs of testing DYSAUTONOMIA, is the only thing i have. so see we ALL don't have don't have an underlying (secondary to) dx. i just wanted to point that out. i don't have anything but dysautonomia. so what was the cause of mine? what was the trigger? what, if by your statement, is mine secondary to? just wondering cause i sure would like to know!

isn't what gary said and poohbear and rammie said pretty much all speculation or theories? even in science it is theorized why we have this. seems to me the medical field and all of us here are all postulating theories by extrapolating what is read or theorized in journals. from what i have read, they are no further now then they were in the 50's. the only difference is now it has the word syndrome behind it. whoopee, a syndrome, that very few in the medical field even have heard of. i don't feel we should dismiss anyone's theories at this point. cause to me everyone is still guessing (theorizing), call it whatever you want. IMVHO

forgive me only read topic not posts. but i have a waxing and waning dullness to sensation in my hands and arms. sometimes i can feel it and sometimes i can't. i have burned myself on the oven and not realized it for days, when it starts hurting or i notice the burn mark. i asked about this not too long back myself. i have no idea why it happens. and other times it is almost as if i feel too much ( more than i should).

thank you for postulating some of the theories i myself have had. something is causing this, and i have not been able to find a trigger for me. probably had it since a kid. when they say trauma, do you think they mean physical, mental or both? if that is the case i should be dead, with either one of those. keep helping us , we truly appreciate it. THANKS

what was this topic on i've already forgotten seriously, it happens to me badly. one min i can spell words i've never heard of and the next i can't spell my own name. i asked dys doc about this, worried i was loosing my intellect, he said no, just part of dys, my intellect is intact. and i said "are you sure i had any to begin with?" and we both had a good laugh , and we both raised our blood pressures which we both needed to do. don't worry word recall is one of the symps.

can also be from rx's.

i was dx w/it about 2-3 yrs ago by my allergist, who btw was the one who sent me dys doc and got that dx. the allergist looked right at me and said i know what you have, let me see if i can get you in w/ this certain doc. mind you, i had no idea who or what this doc was. but the allergist told me it was livedo reticularis, and mine stays. it does not go away. it is worse w/ heat or cold. more so the cold. i also have tegangelasties (SP). both are permenate. sorry i can't spell today,oh well, maybe i can tommorrow. but, i don't know what implications other than what you mentioned. i will assume that that was the reason he sent me to dys doc. never mind, i know that LR is what made him send me to dys doc. i thank god for that very competent allergist to this day. and i send any one searching for a good allergist to him. he was awesome. 13 yrs of searching and he found it w/in 5 minutes. and imagine this, it was only by looking at me. he never touched or performed any tests on me that day. a doc that can tell by looking, i thought i had died and gone to heaven. i didn't even know they existed. and not only that, but he didn't even try to squeeze any more money out of me by running any test, even though he could have. and he never sent me a bill. may god bless him. p.s. you will find out more about it under a derma site. on whole body, but less visual on trunk. and now my teganleasties (sp) are starting to connect. i have a literal connect the dots. oh, my grandchildren are going to love playing connect the dots on nonna. what fun we willl have.

always been high, will not put me on meds for it due to all the side effects i get. last one done in 2004- cholesterol-246 triglycerides-51 HDL-47 LDL-189 cholesterol to HDL RATIO-5.2 i had higher readings before that and know how to regulate good and bad cholesterol. here's my secret (it works, i went back 2 weeks later w/normal ratio and all of the above) COLD PRESSED GRAPE SEED OIL 1 OUNCE A DAY. now how do you get this in your system. nasty to just spoon it. i made my own salad dressing and drank what i didn't eat up in the salad. i also fried eggplant in it (you know cause they soak up alot of the oil), just to let you know it has a low burn rate. so you must keep your level at the low to medium range on stovetop. like 3-5. giving you every detail i can think of, since we probaly don't all have same range. i also took vit A. grape seed ooil works like the omega fish oil w/o the yucky fish burp. which i had every time i tried it. i read about this in a natural healing book, after not being able to take the rx and the fish oil. w/i 2 weeks i went for retake and was perfectly normal. i have it checked every so often, to seee when i need to take some grape seed oil. looks like i am due for a test.

i am so sorry for what you are going thru. i will keep you all in prayer. please keep us posted as to how she is doing. i am facing the same thing and am waiting for some more insight into this gallbladder issue. i have an abnormal gallbladder. i do hope this helps her. help them lord.

everyday and all day long. i push and push and push.. i will not let dys control me and pace myself and worry about this or that. it's not life threatening for me. so i just keep going.

ok laet me shed some light on some stuff hear about hair color and the rest. i have been a cosmetologist for over 20 yrs, i have owned my own salon for over 12 yrs. i have OI,NCS,POTS. legalities out of the way. one more this is just advice and not to be construed in any way of telling you specifically what to do. 1st- if you feel there has been a prob w/ hair color in the past, or any time you switch hair color, you should always do a patch test. which consists of swabbing the hair color on the inside of elbow area for 24 hrs. this id protocol for hair dressers. 2cd- if you are in a reputable, not chain store, believe me those bottles and bowls and brushes are kept clean. we pay heavy fines, if they are not, and could possibly loose our license. sanitation is high priority in salon. jen- i think it was you that siad you are lightening the hair at this time and not darkening it. if i am correct w/ who it is, or not read any way. when lightening the hair, you are using a higher volume of peroxide ( and nothing can lift hair w/o peroxide or bleach and peroxide), this alone would cause your scalp to itch and burn. now if you were brushing your hair prior to the application then it would be more intense burning and itching. any stimulation to scalp prior to application causes more intense burning and itching. and if you scratch while it is burning, will definitely make it worse. i would give clients something like highlight needle to poke w/ and no scratching. 3rd- some of you may have reactions, i do not. but if you do or have do the patch test first. i have had my hands in it for years. i do not believe it caused my dx or sx. only because i know of others who have done this work a lot longer than i have and don't have dys. 4th- please be careful with this so-called natural color.. as like anything marketing is more of the key than it actually being natural. and be careful of henna being used, mixing that w/ other types of hair color can cause hair to fall out. i could go on and on, so any personal questions, please pm me or ask at this location, i would love to help if i can.

i was just suggesting a look into the gallbladder, not that it was. and the suggestion sunfish from doc at 39% to have the surgery was more about the tumors in my gallbladder than the actual ejection fraction. i realized it was w/i normal limits which is why i did not rush off and have surgery. and i as someone else here said , have issues w/ eating and having to stand, or i start shaking. eating is no longer a pleasurable thing for me. a few things may happen if i eat: 1. blood pressure and hr drop to shock level ie; 60/40 area or lower 2. i start shaking and get naseua 3. i vomit 4. i burp like a sailor for hours 5. it goes right through me , to the point i may or may not make it to the bathroom. i have yet to find a pattern to this. i just thought that others may want to have theirs checked. i was in no way thinking they would find anything on ultrasound, but doc knew they would. but i think he was even shocked that he found tumors and not stones. that's why the hida scan came in to play as to rule out a bad gallbladder. his suggestion for surgeon i believe is based on the fact that w/ the lower side of functioning and the tumors it may be best for me to have it removed, before the development of cancer. i am in no way suggesting that others w/ same weight loss as I, might want to rule that out. but then again what would i know, i am only living w/ the fact that i have shock episodes quite often, and dysautonomia. sometimes i am not even sure why i think, i could possibly have a decent suggestion.

i just have no depth perception anymore. focusing is a prob on daily basis, along w/ floaters and opaque color circles in whole field of vision black and white floaters, zig-zags, you name it.

me too. i lost 40lbs in less than 3 months. i am still loosing. had endo, also. now they are blaming gallbladder. btu, they don't consider it surgical till under 35% and mine was 39% ejection fraction. i am still wondering if it isn't from dys since it is a visceral organ. other than the tumors in the gallbladder, i still think could be dys related. you all might want to look into the gallbladder even if you are not having sx. i was not having any other than the weight loss when they found 2 polyps. i want to talk to my dys doc before i do any surgery, although they want me to see surgeon. i,too, have been tested for gluten more times than i can count. something to think about.