ana_22

thats kinda what happens to me most of the time. my cardio (who is a pots specialists) thinks i do not have normal resentation of pots and that i have some kind of disorder of OI that does not exhibit the BP drop. Cardi says this as i have visible blood pooling in legs and feet on standing and cannot sstand for a long time (over 5 mins) without headache, dizziness, stomach pain etc.

its like saying you have this though you show no signs of it.

i too have alot of GI stuff.

are you able to work/function?

so its normal! thank goodness....

ok so tonight i took my bp and as i was doing it i though why not take a leg bp....just why not! (when my auntie was in hospital a few years ago i noticed the bp machine was hooked up to her ankle....she had just had a stroke...so im guessing the arms were too busy with ivs and what not)

Any way there is a SIGNIFICANT difference between the bp taken on my ankle..(lower leg part) while i am standing compared to while i am sitting or laying down.

while im relaxing its like 110/70.....while im standing its 190/140 ridiculously high!!!! i understand your leg is doing alot of work while your standing....but is this normal??

i was hoping that anyone else with a bp machine can do this experiment and post your results before i really start to freak out!!!!

i did a bit of googling but thought better not to go there just YET.

just to clarify BOTH reading are taken on the ankle, one sitting or laying down and one standing.

If my results are completely normal i apologize in advance!

congrats!!!! xxxx Im so happy everything went well and you and baby are safe x

i just got this result back and it was quite low...i havent spoken to my dr yet and wont be able to for a month. has anyone had this? what does it mean

tried googling and got all sorts of answers.

i actually have low uric magnesium, iodine and zinc......

TIA

todd....do you know what kind of blood tests you had? and whether there were any abnormalities on the blood test?

or was it just the muscle biopsy?

thanks

i havent gained any weight with it

wow thatnks for that jump.

ill have to talk to my dr about getting off it.

when you say OI did the BP drop too?

hmmm i use it, its called avanza in australia

i use 15mg but have been as high as 30mg. im pretty sure it helped with my nausea.

i use it at night as it is a very mild sedative effect

i tried lexapro but could not tolerate it.

im thinking of asking the dr to try ween off it to see whether it actually helps my syptoms as i dont want to be using it for nothing!

hope that helps.

oh i have not had any side effect from it.

interesting theory!!!

yes i have started feeling bad after meals...usually lunch or dinner....

my eyes feel dry and heavy and i feel weaker.....

i think its the energy im using to digest the meal.

oh how i miss my glass or two of red wine...............

great way to alcohol detox....get POTS! no thanks!

I pretty much feel terrible all day. 99% of my day is sitting down or laying down.

I feel dizzy almost all the time. nauseated and eating is a struggle. when i have 'flares' its usually after eating or after i've done too much (stood for a few minutes more or bent over to pick up something more than i should have). In a flare I will become tachy, sweaty, sensitive to light, weak and maybe palps and i will need to lay down until it passes.

lately i have noticed that itoo am getting weaker, my legs and body feel weaker.

im not sure but i think cos i have been sick for 19 months and not moving as i would be maybe im deconditioned now?

the most id do in a day is walk up and down the stairs a few times, walk around rooms in the house a few times and walk from the car to the dr if i have an appt.

i wonder if this is too little activity and now that im deconditioned thats why i feel weaker?

do you think thats why you feel weak?

i remember reading some foods are high in a cretain 'something' and that can cause palps...its not msg that im thinking of its something else. i think chicken contains it?

anyway i cant find the info and want to read more into it as i think chicken is giving me palps!!! and i remember when i was reading about this a while ago chicken was on the list.

i hope i make sense as im having a bad bad day

it really could be anything.

i really hope its not cfs or a dysautonomia but if it is the publicity and recognition would be good.

dysautonomia isnt even a recognised word by my computer! every time i type it it comes up underlined in red......for spelling error!!!!!

i have no idea what they will do but i would be interested if you caould post on here afterwards and let us know!

i have had my eyes checked out by a eye dr (not optomotrist...the other kind) and it involved vision feild test (looking into a box and clicking a button everytime you saw a flash)

also the eye dr put drops in my eyes to make my pupils bigger and checked out a few things with vaious tools....was not scary at all.

she then sent me to another testing facility at a childrens hospital where they attach sensor things on your bottom eyelids and around your eyes and measure things while you look at flashing lights.

all of this was comfortable..... the only trouble was remaining upright for the majority of the time! oh and i did find thet they over estimated how long everything would take...i think they said 3 hours but i was out of there in an hour and a half.

i think a neuro eye exam would be different.

let us know how you go and what happens!

& goodluck xx

i testeted positive to mycoplasma....interesting ill have to read the full text whem im feeling a little better

hey ...just wanted to ask if anyone gets dry eyes when standing?

before i got sick i would occasionally wear contact lenses like at concerts or movies and stuff. in the months before i got sick my eyes would be really dry and i would have to keep using those drops so my contacts would feel comfortable. a few times i just had to take them out as i had no drops with me.

anyway now sick i notice that my eyes get dry and achy but only if i have been standing up.....could be 2-3 minutes and they get dry. if i were to stay in be all day i would not have this problem

is this normal for pots? what causes it? is it just an 'energy' thing? body not having any energy for lubricating eyes?

im pretty sure its not sjorjens syndrome as it only happens when im standing or at least upright.

thanks

potsgirl: im pretty sure you can have a pacer and get a spect scan as i was able to leave on my metal necklace.

i had one a few months ago and had mild hypoprefusion in a tiny area....so im not sure whether its significant

thanks mighty mouse!

Mrs. Burschman: its me with POTS! not daughter...i copied that from the newsletter!

How did my daughter all of a sudden got POTS 2 years ago?-- she is 17 now. Is

it genetic.

speaker: Dr. Fredrick Jaeger:

It is known to run in some families occasionally. There is a rare enzyme

deficiency that can run in families that gives a POTS type syndrome.

This is from the newsletter.....does anyone know what this enzyme deficiency is? just want to be sure its been ruled out. plus ive never heard of this!

thanks

hey i just had a thought....how long have you been taking cymbalta? i know it can take up to 12 weeks to get the full effect from antideps.

also just out of curiosity what were your symptoms? did you have gi symptoms? and were you mostly homebound?

thanks

YAY!!!!!! SO VERY happy for you!

Please keep us informed as to how you are going! xx

interesting.

i had an eeg but did not show any seizures. i think it went for 20 minutes

how long did your eeg go for?

does it feel like you are having seizures?

yes i get internal trembling. havent found a reason why.