pearsjon

i was on half dose of .1mg since july of this year. except for the weeks i mentioned before. and yes i had fluids at the same time i restarted the florinef, ame day to be exact. i started having trouble not urinating after bad reaction to fluids. it was like i was having a mini-******* every time i did urinate. now it has been 2-3 days now can't remember and the swelling is gone and i am urinating regulary. i don't have the i need to pee and cant feeling. my doc is out of town but did discuss this wiht him before he left and he has mentioned trying something other than florinef. so i think i'm ok there. i didnot know about weaning though. too late for that. plus i figured i survived 9yrs with this stuff and no medication or sympathy or understanding, much less a competent doc. so, i think i'll probably be ok, like i said he 's just going to monkey with it. and i know what the symps are for the really bad stuff. i think sometimes we take too much stuff. i mean the whole reason for me trying to find out what was wrong with me was my left leg or left isde of body. nothing has helped yet, except to do nothing fun only rest to do what i have to do( laundry, cooking , childcare, etc.) what kinda of life is that? i am going to just live it the way i used to and see what happens. of course i am not an idiot i know that pots is going to bring me down alot and thats ok. i will just deal with it like i did before. when it is real bad i will call doc who will tell me to see my pcp or go to er. nothings changed. i just have a doc now who knows what it is. which will help when i do have to go to er. but pretty much the rest is the same. i have no other health probs though and i know alot of you do. so i am not advocating this for anyone. this is just my situation and my decision. noone shoud follow my footsteps, cuz ther kinda small.lol

had mine in 2000 at age 30. had pots then and didn't know it. i had vaginal hysterectomy and did just fine. i had a baby 6 weeks prior to that. it was one of the greatest things ever. i had a little trouble "waking" up, though. now i know why,duh, pots. just did not know then. i had no prob urinating, i hate cahts and wanted it out ASAP. and wouldn't stop raising cain till they did take it out. i went within 2min. i agree with everyone to let anestheseologist know though. but i was one of those women who was up painting on a ladder 3 days later. i was sore, but able to handle it. of course even though they say pots is not progressive, i don't think i would be up that soon after surgery now. as i have been on a steady decline in symptoms for over 9yrs. i can;t do stuff now i did last year. so it is all relavent to you. just make sure everyone that comes in contact with you at hospital on day of surgery that you have pots an i think you will be fine.

i got a bad vomitting bug and it took 2 weeks to start back on meds. started back and the swelling and paralysis got bad again. so i went off of them again. went to dr. appt. and went back on again and got fluids. starting swelling really bad, kept taking the florinef and other meds for about a week. swelling was still so bad, clled doc sayed to watch it it could be sign of ather things, see my pcp or go to er. which we all know is a waste of time, so i just kept dealing with it. but i noticed during the swelling bp and hr were great. sitting and standing. so i decided that florinef was causing the swelling do be worse, cuz i have always had swelling. do i stoped taking it and in a matter of days swelling is down. i am gling to check bp and hr today to see where i am at. if it is still good i am staying off of it. i can't do anything when i am like that, swollen and the like. i figured the doc was going to do the same thing/ monkey with my meds, so i did it for him. and we'll see. anyone else have florinef trouble? i mean i swelled form a size 4 to size 8 in a week. that's not right in my opinion.

cardiactec, i am like you. i am up at 5:30am everyday and i fell pretty ok. but i start really feeling potsy ablut noon on. i have a few crazy eye episodes before then. but fatigue and all the rest usually happen later. that is if, ido not have any thing residual left from the day before going on ( swelling,pain, etc.). which can happpen a few times weekly. and even then i am still up at the crack of dawn. on my ttt i had a delayed reaction. i was feeling pretty good that day and i took at around 2pm. i did start showin symptoms early but, my legs were killing me. i made it to the last few seconds of the 45min test and lost it. i was slurring adn couldn't breathe that well. i had gone longer than anyone else had according to the techs. i had also gone higher than any other hr and lower than any other bp they had seen. so my reaction was a delayed pots. doc says it's cuz my sympathectic system is so strong. what ever that means. but i think it does explain the delay in pots. when i did fall i was only breathing 3bpm. pretty low. so i don't think a delayed reaction makes us any less potsy.

i have been told that i do not have seizures. and i have never had epilepsy. but i do take phenobarbital evey pm. as i have what appears to be seizure like epsisodes at night. i wake up with severe abdominal pain staart pouring sweat and loose my bowels and pass out. almost like i go into shock. i don't know what you would call it, but i take seizure med for it.

i went through the same thing for different reasons(leg swelling and paralysis) from a nuerologist. i just kept going to different types of docs and even fired a few myself. so don't give up. and see any doc that will see you. doesn't matter what type. just keep going. it took me 9yrs but i finally got a dx.

i am a hairdresser ,too. keep going on disability. it is a pain in the behind. but i had to quit i lost all clientele cuz i can't be there when they want me to, and yo know what i am talking about. i can nolonger stand long enough to do it. go for the appeal, try to explain the nature of our business and also i ahve adpoted the "i don't care attitude if i get it or not" i think it helps get through the red tape easier. you will not be qualified until the lawyer gets his 25% first and then you'll get it. i am going through it with you honey, too. i'll let you know how i'm doing and you do the same.

that gets sweaty palms? this is a recent thing for me. actually since TTT. i am sitting down and they are sweating. oh yeah, got fluids for the first time yesterday and i felt kinda loopy during and after. that happen to anyone?

like if what u just wrote you had to say out loud your voice would be softer looking for that air, to get the "explian exactly" out. once again dys30 and me 0

i have this too. i also get the shortness of breath to the point i can't finish the sentence. also, the word search happens and then my words start slurring or i stumble over them. like if i try to say the sky is blue it comes out the blue is sky. or sometimes i just stammer so much i go blah, i'll spit it out in a minute. in other words i have become a very good listener. now appearring shy which i have never been.

thanks morgan for explaining that.

i keep reading that here and have yet to see anything that tells me how i have a predisposition to dys. i guess i am not understanding how you all know you are pre-disposition for dys. totally lost on this one. cause from what i have read on a few websites, i am like the only one that has nothing else wrong with them but dysautonomia. no other medical probs. PRIMARY DYSAUTONOMIA. just trying to understand.

i havehad them for 9 years all over my body. some can happen in one spot fro hours. and yes the muscle aches. i have watch them happen i know at least 100 times in one spot and then move to a different spot just to start all over again. i have been on muscle relaxers and the docs tell me my neck and shoulder muscle are stiff. never have known why though. now i have electrical shock like feelings that actually make (say it's in my leg at the time)jump. almost like an involuntry muscle jerk. idf you get any info about it please let me know. thanks.

ernie, i am so sorry for your loss and the worry and agony you are going through. i also wanted to thank you for sharing your story, as i know it was difficult to do. i applaude your attitude, it takes a great deal of strength to have that. i will pray for you daily. and send big hugs .

i am sorry u r dealing with this also. i ahve the leg pain noone can explain either. and did u know that different hospitals have their own set of rules by which to take blood. i went for some yesterday and she had to look one up on which type of vial to use and also had to call the hospital to make sure what their protocol was. so if it varies so much on levels and how to draw them no wonder it's so hars to dx of anything. also ther is a website called lab tests on line, and it heps.

thank you morgan!!!!!!!!! i completely understood what you were saying that time and greatly APPRECIATE thefact that you took the time to explain it for me. that was VERY sweet of u. my father has the electrical wiring prob u talked about, that clicked with me, cuz that's the way he described his prob to me(he's an electrician), and from your explanation i would say he had the ablation. he won't telll me that. doesn't want his little girl to worry about him. now i get it . awesome, thanks again.

just wanted to say i am sorry u had a rough day. tommorrow will be better, if notonly cuz u won't see him again. i couldn't tellu how many socs i've seen. ii mean docs. hey,don'tlethim get u worked up, u know it's bad for us dysies. call soc in birmingham's office, maybe they know somewhere closer, or know a friend of a friend of a friend. it is obvious to me that the when you spoke to him about dys before he just didn't want to look like an idiot, so he pretended to understand what you talking about, and what do you know he still came out looking like an idiot. hope i made u smile alittle.

i just wanted to ask if yall could put that in some lamen terms for us "learners" out here. thanks.

i understand what goldie is getting at. i think it falls more on the individual seeking the advice and not the advice giver. i choose not to believe that anyone on this forum has any malicious intent for anyone. only to help. even in enabling i think it is more how the poster themselves choose to perceive the intent of the replier. i come here fo research( most of u have dealt with this longer than i) and to sometimes lift my spirits or to lift the spirits of others. i tend to look at u long time sufferers as guiders in my journey. we have to be realistic. some of us will completely recover, others will never, and some of us just fall right in the middle. a wise woman told me one time I am the only one who can dictate what my feelings are. other people try to change them all day long, good or bad, but essentially it is my reactions that make the difference. we are all enablers to someone in our lives to some degree. my emotions when coming to the site vary daily, according to my needs or wants. and usually i am satisfied in one way or the tuther. as a matter of fact, I have decided that i will get up everyday whether i feel like it or not and try to accomplish something. I am not making daily goals other than to have my feet touch the floor. i know that for some of u that is not possible and that's ok, see, cuz it's my dysautonomia not yours. validation is only relevant to the validator. i recieve validation just knowing there is a site for this dys stuff. i still search for answers, but more for a cure or better managment or a cause of dys for all of us. i am stillso new that i still can't wrap my head around all of it. err go , the ?'s. i am so glad this was brought up as i feel we ALL still ? our problems. and i am not even going to pretend that i can support anyone else i can't even support myself all the time.

ok, so as long as the blood work is normal then everything is good. right. 2yrs ago they found a 4mm cyst(they believe it si a cyst) in my kidney. explanation was that i was born with it. which i thought was strange cuz it wasn't on the probably 4 prior MRI's. when the last MRI was done there was no mention of the cyst in the radiologists report. now with the other things i mentioned at the atart of this post , was the method to my madness. where did the cyst go? and did they not go any further, cuz bloodwork was norm? and also what is the difference when your bloodwork is always on the borderline mark? within normal ranges, but barely? just asking. does it have to be off the scales to be remarkable?

i am hving probs with sweaty palms everyday. i know i have pots,oi,ncs. i have also developed vertical ridging in my toe and hand nails. which i know can show kidney issues. doc won't tell me specifics of what type. i am worried there is something going on with the kidneys. am i onto something or just searching. i have not been feeling well for weeks. swelling and para;ysis have been bad also. i would appreciate any comments. thanks

i am newbie so i didn't know her, but wanted to offer my condolences and prayers.

i also had this prob a few years ago. it has slowed down some. but not enough. i do not eat out and have a cup of coffe afterwards, i'd have people coming to check on me in the WC. if i ave errands to run i cannot eat. basically i can't eat if i am away from home. i know where every WC is where i am shopping at. i even know where port-a-pottys are on the road. i don't like going places i don't know where the WC is. i have found that a xanax helps alittle. but it can still happen to me on a muscle relaxer. go figure. the only thing that is 100% is not eating. i am sorry u have this too. it does cause a serious change in lifestyle.

i have the severe sweats like u r describing. i have soaked the bed twice in the night to the point i have had to change bed and everything. u would have thought i had been in 100 degree weather gardning by the amount of sweat. but i do not like to be cold. typical pots i believe. asked doc about and for me it seems my sympathectic side is overactive. and thats all he said. i can't tell what that means though. i will burst into sweating frenzy sitting doing nothing. of course i am on florinef, and the typical pots regimen meds, except phenobarbital. i don't think it is a regimen med for pots. u r not alone and i am only 36. not menopausal.

i am going to rhuematologist in nov. to try to answer that exact question. i have alot of pain everywhere. some days real bad others not so. doc says pots doesnt have that much pain wiht it. but all my joints swell and hurt right in front of or beside the joint. he thinks fibro. i believe they are going to do a spinal tap to look for something called "substance p". which can apparently produce these symps. i'll try to remember to come back here and let you know. i have been couch ridden for days and weeks cuz it's so bad. if u don't here from me. get on to me. my memory *****.