nikigrl8883

i was just curious as to see how many of us cannot work becasue of this illness? seems alot of people in here can still work at least part time...i dont even wanna think about work right now.. i tried to continue working when i first got ill and didnt know i had pots and i felt as though i were dying and had to leave work twice finally i gave up on it...my boss said when i had to go home and i was standing there she started to see my eyes go back into my head ...how

i havent been here long enough to come to really know jan or jeff but i can imagine how hard this must be for you jan....i dont know what your religion is but i truely belive in God from some amazing experices ive had in my life ive come to know he exists ..i will pray for you and jeff there is life after death,,may god be with you

thank you spike for replying it always makes me feel better to talkt o other people about my symptoms so i dont feel so isolated as i do in real life now...you guys are pots angels

lauren if you dont mind me asking how long since youve had pots? and is there an underlying cause you know of? how aold are you just trying to compare myself again

hello again .... i was wondering why htis happens to me....without meds my heart rate is usually normal laying down 70s low 80s standing it goes high depending on the day it can be worse than others up to 140 ive noticed somtihing alittle odd my heart rate somtimes goes into the low 50s with meds sitting or laying down its even gone into 40s a few times and my bp gets really low laying down somtimes not standing for example 80/40s even before i took the beta blocker i noticed at night my heart rate drops into the 50s sitting or laying down ...is this normal for pots people what heart rate is too low for us?! what to do? i only take a half of a beta blocker once a day i wanted to add also even before the meds my bp would drop really low laying down too

i have no idea whats casuing the pots at all could be viral hormonal u got me...do you know of any underlying conditions that can casue this feeling ...knowing that ive had normal mris eegs echocardiogram ekgs holter everything was normal ....blood work all normal no liver kidney lung or organ issues that are showing up im not anemic i dont have lyme or rhumetoid arthritris or lupus nothing so far when i was a kid i had mono i was 14 but that was years ago and i didnt have any trouble after until now

i have had a transcrianal dopller that included the kneck ateries the main ones on each side and it was ok and im only 23 and not overwieght i just had the transcrannial dopler in august and it was normal and i dont have high cholestrol i dont think if i did i think the doc wouldve told me since ive had like amillion tests so i have no idea i had all the major vessels checked in the head and neck by ultrasound

before my meds i would somtimes got up to 140 standing with meds up to 100 about resting heart rate depends on the day somtimes 50s 60s somtimes 80s..... off of meds my resting heart rate is somtimes 80s somtimes 70s

sunfish, if you dont mind me asking what other health problems do you have with pots? i didnt have any really before this besides being in a ruts for along time and extremly heartbroken devesstated at my loss...and after my dad got remarried AGAIN i got sick that was in april 2 weeks later i was like this actually 1 week later ,,,im scared becasue i dont seem to have any other major health issues and i seem to have a severe form of pots and i have no idead as to why i have it there were alot of things that happened right before i got sick that couldve done it i think i also hurt my back and kneck 3 weeks before but i thought nothing of it becasue it wasnt that bad i mean somone lifted me up and cracked my back and i think it did somthing to it but it doesnt hurt anymore and hasnt since i got sick the only issue i have medical so far that i know is i keep getting a cyst every few cycles to my period and i have a thick lining becasue i dont have good periods but im only 23 so they dont see the need to do a dnc they just put me on birth control ...when i went to a hormone doctor in august thinking i may have a thyroid or adrenal issue i had all my glands tested and the only thing that came up was i have a slightly elevated prolactin level which is darn odd since ive never been pregant and my mri didnt show a pituitary prolactoma i think theres somthing up with that if u ask me theres no explantion for it...and as most people know the pituitary gland controls everything it sends out signals to all the to other glands to do things just a thought //and as i also mentioned everyone at my work had a flu virus too around the time i got ill so theres 3 factors it could be

hi i know alot of us have this lightheaded dizzy drunk feeling alot but i was wondering who in here has it pretty much all the time when sitting or standing mostly a spaced out lightheadedfeeling and then while walking i feel like i have to hold onto the walls so i dont tip over literally and i have this wierd constant feeling in my head and somtimes its like an elevator drop in my head i dont know how to explain it better its like a dropping feeling when i try to tell doctors that they look at me like i have a screw loose and they say hmmm you feel like this all the time and not just when u stand and the answer is a loud yes all the time...and i think becasue i say that they think its anxiety too but i know its not that although i do have severe anxiety since i feel like crap all the time everyday and i cant do anything they dont realize that do they:(who wouldnt have anxiety! im about to buy a wheelchair so i can go out but that embarrasing for me too:( i just feel like the doctors are missing somthing how is it that a person can have this constant feeling all the time and not have a severe problem that they cant find

what kind of movements can i do too check if one side is weaker? are there a certain type?

thank you very much for the reply i appreciate it

YES! from moring till night almost all the time i feel like that lightheaded and off blance and dizzy i know exactly how u feel its the worst part of pots for me if it even all relates to it directly ...this feeling is what keeps me from living life i cant stand it how long have you felt this way

ya my eyes do feel like they jump back and forth too! especially when i close my eyes its like quick flashes that happens somtimes as well...well at least u have somthing similar

hi ya im getting info on the study by fex ex this week when i get it i will let everyone know whats going on with it and yes it is in boston ma i am in the area so i figure ill try it i dont know yet when it is i think i read the paper work and then tell him in interested for sure and we set up a date

ok i swear somtime si think im about to drop dead im not kidding or exagerating like for example at night in bed somtimes im trying to sleep and i feel like im blacking out and my breathing gets shallow like im loosing conciousnesss i dont know how to explain it it feels like theres somthing wrong with my head.....when i first got sick in april i felt a constant pressure in my head like somone had hands on my head pushing it all over that lasted for weeks now that comes and goes but i swear somthings really really wrong i dont know how to even describe this blackout type symptoms almost like im gonna have a seizure but ive never had one so i dont know what thats like and ive had eeg and it was normal i dont know whats going on i even had a trancrainl doppler done in august same day as tilt test and it was normal feels like somthings blocked or off balance ive had mris of head normal does anyone know what i mean at all sorry about all the typos i type way to fast ...next time i will watch what i type i dont think i can change it now

hi i just looked at the dinet list of pots doctors on this site and found one in boston i called there and i was talking to doctor who is starting a pots study where they keep you over night one night and do all kinds of tests to try and figure out why you have pots and what the cause is...it doesnt cost a thing and i think you actually get paid ///sounds liek a sweet deal to me! i just am not crazy bout staying over but hey if they may help me and people like me figure this out its worth it!

i think people misunderstoof me o wasnt trying to say anxiety caused my pots i was asking if people noticed that it may have somthing to do with its onset orBROUGHT IT OUT you know what i mean? im saying if recently i hadnet been under all this stress maybe it wouldve never came out as pots or lead to pots more is what im saying...i was curious on if there was in some cases any connection between the two at this point im willing to hear any opion

i get papaltations somtimes where i have to gasp for air i think i posted that before

my tachy is when i stand of course and in the middle of the night in my sleep ill wake up with it racing very fast its scary

ya im making an appt with one tomrrow i wanna know if any of this is ear related i thinik its my right ear thats off i think its viral and thats how it all started ud think one of my doctors wouldve sent me to an ent by now!

i dont think thats why i veer to the right ive never actually fainted so i dont htink its that for me///im thinking maybe inner ear related? the thing is my ears arent blocked and they dont hurt so i dont know if that is it ,,,i dont think its pots though i dont htink pots soes that but ive been like that since it started in april im wondering what is casuing this makes me think its more than pots and thats what casueing pots too i think geez i hate this....what i have is like a mystery and if it was my inner ear i think it would have gone away by now its been 6 months straight so i dont know if its that either what the heck! can anyone think of anything knowiung i had mris and ct scans normal theres gotta be somthing causing it

hi i never mentioned this before but when i am walking i feel like im veering to my right i can still walk a straight line if told to i passed all the neuroligical exams and had mris but i feel off balance and like im walking sideways! i guess i can still control it without people noticing it but i feel it my balance is def off my ears dont hurt though i wonder what it is does anyone else experice things liek this

i just think it brought it out in my case i didnt want my dad to get married again and like a week after the wedding i was like this and have been since and i was in love and my bf left i was under anxiety over him for 3 yrs straight worrying and i was going nuts over my path in life too recently i think my body was run down and thats what brought it out i want it to go away!

im just curiouis i have had alooooooooooot of hardships in my life and been under tremendous anxiety growing up and especially in the last 4 years i was broken hearted ...is it possibly for this illness to be provocked by anxiety and heartach of loosing someone very close to you... can it change your body someohow does anyone know about tthis as a possiblility for this illness?