pearsjon

anyone have trouble with this rx? it seems everything they give me for vasoconstriction does not seem to work for me. florinef caused me to swell way too much. midodrine made my bp and hr crazy. now the cymblata dry mouth something terrible,and i am trying to determine if its' the cymbalta or the b12 shots making my bones hurt. so i stopped taking it yesterday, we will see. plus my blood pooling was the same while on them. i had been taking them about a week till i quit. i son't know how long it takes for them to take effect though. the midodrine thing really has doc puzzzled though. any help is appreciated,thanks.

welcome mark, even though i hate to see another added to the list. i am still pretty much a newbie and don't understand alot of this. you sound alot like me, except w/o the injury. my doc said i have one of the highest sympathectic systems he has seen yet. you maybe can translate thta to doc terms. i can't. i just assume that is why i can never sleep or sit still. even when my body makes me i am not happy about it. my mind never shuts down even in sleep. i am up at 4-5am everyday. so tired of that. sweaty palms and armpits, all while i am freezing. i cannot get out of bed w/o the hyper sweats. shower water is always cold to me no matter how hot it is. b12 defficiant which has been showing up for the last 9yrs, noones caught till 2 weeks ago. my adrenaline keeps me going all day most of the time. i crash hard, usually a 15 hr sleep, and it's back to the adrenaline mode. i don't know any technical levels on epi and cates, but i thought that maybe telling you my symps that they could not be related to accident. most people here have had a trauma or something to set this off, for me it is primary. i feel alone in that. my dx is pots, ncs, oi, b12 defficiant. if it helps let me know and i can go further into symps. they found a 4mm "cyst" in my kidneys 2 years ago, and nothing furthers has been said about it. nor has it been checked on.just letting you know our adrenaline seems to be running at the same mode. i hope you find out you don't have adrenal dys. good luck to you. sandra

i am glad to find out i was not the only one getting tired. i am going to monitor next shot friday to see if it happens again. did anyone have bone pain start after the b12 shots? i am at 5 days after 1st shot and am experiencing alot of bone pain. i think i need dg here. day one of shot- got tired, awoken that evening with charlie horse bad, that lead to contracture for the next day and could barely walk. day2-wlaking was painful and a chore day3- muscle contracture let go day4-a little bone pain and i am still tired day5-alot of bone pain and nausea i don;t know whats from b12 ND WHAT'S FROM dys. and it appears to be standard prtocol as for dosage. i am hoping it was just fluke it all hit me after shot. we will see friday. but my main concern is the bone pain and nausea. i think i will contact prescribing dr. and let her know. thanks for all your help yall. cyanocobalamin 1000mcg IM once a week for amonth then once amonth.

ok took b12 shot and got very tired. coincidental? maybe i will have to see when i give myself a shot next week. funny thing is i got the cramp from you know where and now i am swelling,paralyzing,and muslce pain and bone pain agian. i was sure from what i read it would help these things. i need dguest i think to commment here. i am going to see if it happens nest week and then i'll know. could all just be a fluke it hapeened at the same time. iknow at dys appt. i was showing hypotension, with increasing heartrate. so will see. thanks.

well i found out i have anemia caused by b12 defficiency. i have to give myself a shot. havn't seen rhuemy again yet but is looking and sounding like malabsorption. we will see. any one else have this?

from what i have read it can be proven thru skin biopsy. this is something i have been looked at for. i have livedo reticularis. if you google that there is a dermatology site that shows pocs and explains alot. welcome, and hope you are negative.

the only thing that helps me is to stay on the xanax. one @ a.m. and one @ p.m. it leaves a constant flow for me, i am pretty small so doesn't take much. although i have had to take more than that in a day, especiallly if anything major is going on. i have just learned to adjust for me. like it use to be real bad riding ina car with people than it got bad enough that even with family. i have gotten so much better now about it, but i still don't ride with anyone other than family. i had a pots "dump" episode happen in public which i think is what lead to the anxiety about it. that was b4 i even knew what dys was. i had a couple more over the years and now know that i just can't eat and travel. if i do it's short distances. and b/f know's when i say i gotta go, I GOTTA GO. i carry a towel in the car at all times, even when i ride with family. i don;t know why it helps but it does. i have never spoke of this b4 now. but i thought it might help u, i hope it does. coping in our own way is i think the cure for this disease. it doesn;t have to make sense to anybody but you. but if it works then it's worth it. if you really look back b4 your dx u will see how much u did COPE with things u didn't even know were part of the problem. i know i have begun looking back and realizing i have had this alot longer than i even thought. i had just developed my own coping skills for things that were going on with my body, never realizing one day it would come to a point where i would have to seek medical support for it.(u know new symps all the time). much less get a dx. but here i am, and it's not easy to find the right management for your issues, but they can be done. i started getting worse about 10yrs ago now. somehow i knew that it was going to get to a point where i could no longer to my job.(there now) but i started planning then for the career move. i am finally at the start of it. my b/f the jeweler had to startworking to build inventory for years to get where we are today.(opening jan 1st). it's a nice store, but could be better and i am planning for that too. this is my way of coping-planning. yours could be totally different. of course the latter is long term, where as the former is short term. i hope you have better days ahead. and if music, reading, standking on your head, curling up in a ball, screaming at lyour neighbor, whatever it is DO IT. and let the world laugh. joy comes from making others laugh, even if it is at our own cost. love ya guys.

this bothers me as much as yall. it is was sent me to eye md that gave me dx of occular migranes. i get as dizzy as you described. very nauseas too. i have always been a car sick person unless i am driving. maybe it is the over stimulation. but when they did the strobe light thing to me at nuero, i showed nothing. so i am more confused. but it is god awful. i put my hand over my face( of course i am not driving at the time) ]. thanks for making me not feel alone.

that's the thing. she ruled out fibromyalgia in 1st visit. good thing. now i am doing a 24hr urine thing,and had to give special u/a yesterday. did fasting bloodwork(not glucose) yesterday. checking cortisol level. anyone know what that's about. the tech was freakin out on how many test rhuemy was running. she looked at me and said "ph my god what do u have". of course i didnot want to even go ther about dys. i told tech hopefully nothing. she said she had never seen such an intensive work-up. i was surprised by that. rhuemy i think believes ther is more going on than just dys. i am hoping she is wrong. dys is bad enough. oh yeah of course they blew my vein again. that's 5 times in a row for bloodwork. what is up with that? and it's swelling at the location, i have never had that b4 nor have i ever had one so tender. just thought it weird. thanks for yalls input.

do they seem to help. i just had 1st appt. 2 days ago. seems to want to try to find some more answers for me. just curious if seeing one has helped anyone else. and the treament if i may be so bold to ask. thanks

they have always seem to make me feel better, so not much help there. but was glad to find out i wasn't the only one still having sex.

desiree, iam not sure how he came up with that, other than from my ttt. i don't anything albut actual numbers that were shoen, but ican tell you that the peop;e doing the test said i do not do well with lying or standing (not tha i know what she meant by that). i am ortho hypotensive. true ortho intoralerance. at one point i told them i was having trouble breathing in the lying part and i was down to 3 breaths per min. not a good thing. the techs also aid to me that was the highest they had seen w/o passing out, and of course i did subsequently nod out i guess, or pretty darn close. when i went to find out results of ttt. my doc said i had a very high sympathetic system. that's all i know. i don't think i helped u much. but i can tell you that i have always been the type of person to never sit still. of course tha's all changed over the years. and i still have the hardest mental time wrapping my head around that. so typing and anything i can do sitting even though i still have trouble then, sort of keeps me on the level mental status. ok ok i still drives me nuts but i am handling it better. i have alot of questions for him on my visit,and this is one of them, iwant #'s expained to me. i'lllet u know what i find out.

ditto for me dys doc said i had strong sympathectic system, i am asuuming the rushes are coming from that. i don;t know about you ,but when its gone i crash and burn.

thanks pat, i did look up the periodic paralysis and the others. i do see alot of similarities in what i've going on. i am going to talk to doc about it when i see him next.

ajw, this has been happening to me for oaver 10yrs (paralysis and swelling). i don;t have white caot syndrome cuz i do stand up for myself. if the doc had looked at previous records he would have seen that i am always low bp ( which is why i have suffered w/o dx for so long). they did not get a babinski or non babinski sign. which they should have gotten a response there, either up or down. and they got nothing. the PA saw weakness of whole left side ,just not as severe as the legs. when this is not going on i have "normal" reflexes in feet and achillies. the paralysis and swelling were bilateral, meaning both legs equally. yes went b/c i couldn't move legs, and also end up wit abnormal gait even though they never write that down. if the doc is dragging me, then apparently i can not move my legs. i think the only reaspn i can stand is that my thighs muscle are still strong enough to keep me up. cuz i can feel the strain on them. and because i knew my bp and hr were up i could feel it. my dx is orthastic hypotension, so for me to runf that high it's not right. stress is not something i can't handle, i think i do pretty well, anyonewho knows me would say that. this had been going on for 5 days before i went to er, so i was resting for that long before i went in. so increased activity and stress do not make sense. when this happens i can not move anything below my knees( and sometimes they r difficut). icouldn;t move my ankles raising or lowereing and same with toes. i can't make toes srpead apart, lift them up nothing. i just can't figure out how swelling and paralysis in any part of the body is normal, especially when i am having so much trouble finding someone else it's happening to. btw, i am no more bipolar than the man in the moon. if u knew me u would understand. i raised 2 children w/ no chid support and no husband for 10yrs and i started at age 16. so i think i would know if stress was causing it. ioften wonder that if i was so stressed to cause this why would it not happen everytime i go to the doctor. in other words if i caused this to myself, wouldn;t i find it a little easier to get help while at pcp office and just make it happen then. every doc that has seen it(other than er docs) tell me to go to research hospital they have never seen anything like it. they tend to freak a little. anyways thanks for the help, when it does happen again and it will i am just going to go sit in my dysautonomia specialist office till he sees me. then he might know if it is dys realated or not, and go from there. and yes, i have occular migranes, but not at the time this was going on. i am prescribed 3 xanax aday to help with heavy adrenaline prob. i was on 2 at the time. ishould have been a mellow cow. pat, i have done a little research under that hypokalemic and i will do some more. u know with this dys stuff i have to read everything 2-3 times before i quit merging altogether in my head. i am also going to talk to him about dystonia tht dguest ,brought up to me a while back. thanks again for your help.

my last er visit was horrible i won't go into all the gory details, as it is not good for me to get that upset. i wanted to know if anyone has gone in with paralysis below the knees. swelling from knee down. they could get not get reflexes from knee down. reflex at knee but that was it. they did orthostatic bp's sorta of. they took bp as soon as i stood up, and only once. i thought with the dx that they would take it for up to three mins. am i wrong? it seems when this happens to me my hr and bp are fairly ok, meaning they are alose together. like lets say 111/99. when i went in it was 142/93 with a resting hr of 100. high for me. as i am always low like barely reach above 90/60and hr is usually around 60-70. of course i was told that was normal. the more they messed with me the lower bp went. normal also. it was suggested i was bi-polar. lol. iam always worried they are missing something when it comes to my legs. my calf muscles get extremely large , as if i am a body builder.not. i smoke, so that doesnt help. it was also suggested that it could be from my period , i ahve had hystretomy. i am a little concerned that they r not dealing with my legs.. i do not get upset about it just worried. how can nothing be wrong and yet i have no reflexes? my dx from them( and yes they knew about all my pots,oi,ncs stuff) chronic,intermittant bilateral lower extremity weakness. even though PA was stating left sided weakness. i recieved no other info from er doc just sent me home like i was a crazy person. i am really worried about this leg thing as it is coming on again. i told er doc it was an average of once a month,he was like so maybe every 28 days, i said no, on average once amonth. so have any of u ever gotten swelling and paralysis at the times of your period? kinda of trying to figure his reason on this. i couldn;t think clearly enough then to think of thta question. and have i ever seen i psych. was a question. or maybe i was stressed. this is wwhere my dys specialist is at, and the er he told me to go to for that reason. i am so confused. should i step out of the bounds and go to uab or mayo?

dizzzy, this happens to me just like you described. i try not to laugh which makes people think i'm a u know what. but i'm not, well at least not most of the time. i alos had to give up singing. i cheat on that sometimes, though. even though i get very symptomatic when i do. it brings me joy, so i suffer. i was releived to see u describe laughing as u did, finally some one else who has this. my last visit to er, was disasterous ,cuz i had no crying with my pain and paralysis(something else we have in common). icould not make dr. understnd that crying takes to much effort and makes me feel horrible, even though i want to. i get the freezing and sweating at the same time prob. i don't know why this happens, i know it is on the avoid list here. i'll keep in touch with that and u too. maybe we can figure this out. do you also fell nauseas? the fever evrything happens to me just like you said. i have been telling docs i feel feverish before this stuff starts for years. of course to no avail. do u also get sweaty palms? right now i have a cold i guess, can never tell waht is dys and what isn't.

i have both, wiht true othastaic intolerence. my bp and hr are all over the place. on my ttt it showed both. i have only passed out at night. i have the incresed hr upon standing and if i ignore that i will hve the low bp and low hr. i feel syncopal but have yet to pass out, at least during the day anyway. but i have been very close before. i am still notmanaged well on the meds. my doc is dys specialists. so he should know.

does this mean since i am 37 i will grow out of it in 13 years. wohooo!!!!!!!!!!!!!! that's the best news yet. pots,oi,ncs

i am in your same boat. can't find anything other than pots,oi,and ncs. basically all the same. but it has been nine years and i have progressed. i was dx in june of this year. but like i said have been dealing withit for 9yrs. even though i have periodidc paralysis. i know some have come out of this, but i haven't. i hope you are the lucky one.

i was a cosmetologist. and i ran the salon ans a fine jewelry business. and a landscaping business. had to quit in january of this year. i still try to help manage salon and jewelry, but a we all know it changes daily.

we all need to find single anesthesiologist and marry them. they could monitoer our probs and give us the meds we need for that time and that part of the day. ok i'm kidding! but it could work. hope thats a laugh on me.

luky charm, that was kind of what i was getting out. how can a consistent high bp been any less threatening than a flucutating one? we potsies r classified as non-life threating(chronic, benign) call it what you want. but BF's high bp can be life threatening and yet we are on the same drugs for the similiar reasons ( to maintain bp). i have pots,OI,and NCS. iam just trying to wrap my head around the difference. i have had resting hr all day long fluctating between 105-120 with symptoms exaclty like he looks when he had it one time. AND THIS HAPPENS TO ME ALL THE TIME all day long. am i making any sense,well inregrds to the question anyways. i am not trying to compare the 2 probs just the mechanics behind the 2.

i am not understanding how a racing hr and then a slow hr, then a high bp and then a low bp is benign. my boyfreind has high blood pressure and he is not considered benign. WHY? surely a constant rise and falll in all our areas r just as remarkable as a constant high or low bp or hr. is one just faster than the other at nearing the end. i am very confused by this. he manages his through atenolol. and i take clonidine. all for the same purpose right. keep bp under control. am i having a dys moment or is what i am asking making sense to anyone?

in my defense i was only 30yrs old. i am not advocating my craziness for anyone. i am kinda of stubborn. my family would laugh at "kinda of". YES THE BODY NEEDS REST AFTER ANY SURGERY. i was just giving personal experience. by the way i can't get on a ladder now either,stairs are hard.