nikigrl8883

i have also woken up quite a few times with my hands and arms slighty tremoring but its not all the time its hard to explain but it goes away when i move my hands its wierd does yours go away when you move your legs?

ive noticed that when sitting or laying down my heart rate is usally normal or a lttle low when i stnad it jumps alot say from 75 to 95 the longer i stand the higher it goes up even if i dont move i just stand there and its gets higher and higheruntil i have to sit again due to feeling woozy even with the beta blocker but not as bad as without it obviously.....im afraid to exercise my bp goes up when i stnad but then starts to drop the long i stand still along with my heart rate going up it doesnt get too low though but it does drop then goes back up its like its fighting to be normal,,,i hate this i know i always go on and on about this illness but its not really an illness in itself it all depends on why u have it and mostly everyone has it along with alot of other medical problems but i dont! i am so annoyed with this no dancing or atnading long i use to stand up at work for 9 hours straight with no problems at all that was a yr ago then bam one day i felt nasuea at work and ever since its been downhill .. i worked at a hairdresser store i wonder if someone spilt chemicals on my food or drink! im starting to think so and there was a virus at work right before i got sick too but i didnbt get it all i got was a cold and a little sore throat i dont get it could a normal cold virus start pots? or does it have to be a certain kind of virus? i cut myself at work on my hand too when the virus was going around maybe thats how it got into my blood? or maybe its my pituitary gland somehow ......i am so annoyed help me! i dont even feel like i just have pots here i feel like im differnt from all of u

old lady lightheaded, i have been liek this since before i even took the beta blocker and i only take a half of atenaol a day so i dont know no one does what the heck is causing it all the time it is wierd that no one can find out why ive had all the blood tests to rule out things that would casue that and all of them were normal... i even had my eyes examined just normal as usual the only thing that has been shown up on tests since i got this were the pots symptoms and a slighty elevated prolactin level without a tuomor my adrenals were in normal range and so was thyroid so i dont know!

yes my pulse goes way up when i stand the beta blocker i take helps that compared to what it was before but there a big change //i feel lighthead and faint even sitting though somtimes my head feels wierd worse when walking i guess but it like a constant feeling i dont really know how to descibe it exactly.. somthings really wrong here but this has been going on since it started in may it been like 6 months of it and ive had all the tests to rule out major things it doesnt make sence...ive had mris a transcrannial dopler eeg ct scan heart tests blood work the only thing that has shown up at all is the tilttable test heart rate changes and a slightly elevated prolactin level at the hormone doctor ive had an mri of the pit gland there was no sign of tumor ....i also feel edgy and keyed up or extrenly tired i dont know what this is i feel like im the only alive with it even alot of people on here dont relate to all my symptoms

i am seriously lightheaded all the time and i get this feeling like im in an elevator that drops you know that feeling people get ina n elevatr? i get that somtimes ..also i get the sensation of moving like i moving not spinning but moving somehow like im moving....ive been like this since this all started in april... ive had mris and there was noting to explain this i hate that feeling its what stops me from doing things ...it makes me nervous to go places ...my ears dont hurt at all i dont know why i get that all the time

ya exactly! me too thats why im so nervous about the pots thing too i seem alittle differnt from what the other people are saying i mean i have alot of same symptoms but im like u

a huge whopping YES mine does that too alot...

i have had that symptom many times it started when i first got pots or whatever the heck i have... from what i know i dont have asma dont know whats casuing it i feel lightheaded alot and when that gasping thiing happens it feels like my heart stops and i stop breathing then i gasp and get it back its quite scary.. i dont know why i have pots yet no clue....my ist main symptoms were waking up with a numb arm pressure in the head like all the time lightheadeness feeling liek passing out fast heart rate while standing somtimes even sitting but way worse standing oh and my favorite tightning in throat and espogause

i feel the same almost all the time i feel light headed while sitting or laying too but with the high heart rate until i stand i dont know why i have pots so i cant help ya out yet....im just as lost as you

hi amy i was diagnosed with pots in august but have had problems since april....i have alot of bad symptoms like lightheadedness headaches off and on sweats while standing or walking feeling off balance the obviously major heart rate increase upon standing...the doctors dont know why i have it either so far ive had tons of blood work seems normal mris ekgs echocardiogram eeg seen two neuros...i dont knwo why i have it i didnt have any other health issues before april i was fine so your not alone.. i am 23 and was a manger before and active now i cant work i try to do things here and there but ya i noticed it seems that alot fo people on this forum figured out why they have pots but i dont have a clue it can happen////from what ive read it seems that in people with decent health alot fo the time its casued from a virus attackign the system or hormonal....back problems injury ///you got me

how is everyone doing today ? i am am just curious in here who knows whats causing there pots? or if most of you have no idea....its so frustrating not to know the reason and im one of those people in general who always wants to figure things out not just with me but just puzzling things in general...to me that has to be a clear cause for it for all of us this is no way to live, im sure you all agree...i dont know how any of you work unless your sitting down,,,,for me its really wierd becasue most pots people have low bp while standing mine is either normal or a little low but not that bad its the heart that gets really bad.....i just dont feel right more so while standing still or walking i get like sweats and lightheaded i sure dont ever feel normal so days are better than otehrs as you all know....is anyone like me in the sence that when they wake up and there laying in bed they actually feel normal again until they start walking around then the rest of the day even if im laying i still feel like crap does anyone else in here jsut have a fast heart rate while standing and somtimes sitting without the normal low bp standing

i know exactly how u feel i feel like that all the time no energy like i ran a marathon always tired short of breath and lightheaded all the time ive noticed i feel the most normal when i first wake up i feel like myself laying in bed and i dont wanna move lol but i have to eventually and then its right back to feeling liek crap until i wake up again the next day/// oh and ive had echocardiogram ekgs as well and passed them all it showed ever was on a stress test that i had a fast heart rate way too fast but normal ryhtm so your not the only one who feels that way

wait a min ....wait ur family member told you that you dont have pots becasue your were afraid did you have a tilt table test? were you actually diagnosed with pots by a doctor? did the doctor tell you it was all in your head? that doesnt make sence unless you were never actually diagnosed int he firstr place did you just have anxiety attacks ? or were you actually getting elevated heart heart rate only from laying to standing?

honestly i think its from my pituitary gland malfunctioning...when i went to the hormone doctor in august i had a series of hormonal blood work done everything was normal except my prolactin level it was elevated so i had to have a pituitary mri which showed no sign of tumor the only thing it did show was my gland was borerline enlarged i showed it to a neuroligist and two radiologists and the endo doctor who all said there was no tumor and they didnt know how it would be causing me to have pots unless my other hormones were out of whack like adrenal and thyroid which they wernt / but they all agreed it was pretty darn wierd that i had elevated prolactin i have never been pregnant in my life so for it to be like that is odd unless i have a prolactomia which they saw no sign of! but it was enlarged ! makes no sence even to them it didnt....i do back to have more blood work in november i also dont think i can get pregnant becasue of the prolactin thing i am suppose to be taking a pill bromcriptine that they give to shrink tumors of the gland or to stop lactation it makes me sick when i take it but i try to everyday at night funny thing is last night i didnt take it and i felt good then i got really sick like major anxiety felt waves of lightheadedness and adrinaline so maybe it is that gland oh by the way i got hit int he head with a bottle my forhead in november last yr i had a concussion where i got hit was in front of my putituatray gland im wondering if that threw it off or somthing i know theres no bleeding in my head or anyhting like that

hi i started another post recently "where do i start" but i thought i start a new one to focus on my question ..thanks you to those who replied before and yes i am on a beta blocker atenonol i also...i asked a question about a tilt table test what im saying is while i had the tilt test i also had the sweat test breathing test and electic shock on ankles and wrist and i passed all of those test the only one i didnt pass was the actually tilt table where they lay u down and then stand you up i had the usual pots reaction to that...my main concern is if ive passed the sweat breathing and electric test that means i dont have complete autonmic failure right?what does that mean and what does it rule out on the pots diagnosis...for example just an example, say some one had pots due to an adreneal problem would that show up differntly on the sweat test or breathing etc in comparrison to someone who had pots due to say a virus...

were do i start/ i am having a really hard time dealing with this illness and not knowing why i have pots i keep thinking theres a reason why i have that that is simple and i cant get rid of it if i only know why i had it i cant do anything anymore im not kidding nothng.....and i cant move out of my house now and even meets guys anymore. im stuck here ...my dad just got remarried again in april and 2 weeks later i had pots i dont like my step mom i cant even have friends over anymore if no ones here and im 23 yrs old my step moms new rule....i feel trapt in a prison becasue i cant even save money to get out of here either ....my friends want to go out to bars and clubs and i cant go ....and i so wish i could meet a new guy becasue i feel like i lost my soulmate he wont even talk to me now for no good reason ..he just disapeared///no one will ever want to be with a sick girl....im in a huge depression and i was in one before i got sick too becasue of loosing my ex bf now its like somone signed the death sentence...theres not one day that goes by that im not sick in some way...now i have chest pains all day and still got the tightning in throat along with tthe lightheadeness constantly i cant stand not knowing the reason for this.....i see that alot of you know the reason you have pots and i dont....not a clue...could be alot fo things i suppose ...and my doctor doesnt seem to be too interested his reply to me wanting to know why i have it was you may never know why...great i thought.... i am defentaly calling that place in boston for dysautmia i have seen 2 neurolgists though so far and they didnt even think anything was wrong with me at first until i had the tilt test before that they looked at me like was insane and told me it was anxiety...now they know its not but they still arent trying to find out why i have it...ive had alot of regualar blood work but i dont know if it was for alot of the stuff on the pots list....its just that ive had a very hard life so far since i can rember and i always thought when i grew up id be happy finally with my own family and now this ill never get out i swear thanks for listening by the way i have a question when i had the tilt table test i also had the sweat test the breathing test and the one where they shock you on ur wrists and ankles i past all those tests the only one i didnt pass was the laying down to upright posture (my heart went up to much) does anyone know what that means>? if u passed all the other tests i guess what im asking is does anyone know what kind of pots that is

ive experienced that like ur head is moving back and forth side to die yes i know the feeling

this is somthing i feel like everyday i feel like somones got a light hold around my kneck like a throat tightning its one of my main symptomsi cant stand it not many people on here complain of that i noticed i wonder if thats its own issue but it started when the pots started so i thought they were realted ive had a chest x ray in may and it was normal and i dont have a goiter i dont know what the heck is causing that when i breatrh really deep once in a wile i get a sharp pain in my chest ive had an echocardiogram and a chest x ray and an ab x ray nothing ?

does anyone else in here feel like there is tightning in there throat alot almost like theres a lump there or its just tight....and does anyone else have a low heartrate especially when trying to sleep like to the point you feel like your heart is stopping has anyon ever gasped for breath because they felt like they had no air and there heart stopped for a sec until they gasped for breath? also has anyone woken up in the middle of the night with there heart racing thats happens alot i dont know if i have sleep apnea but i know i dont snore at all,,, i may stop breathing in sleep i dont know somtimes it feels like im not gonna wake up im afraid my heart will stop and ill die its very scary is this normal for pots? also i am extremly lightheaded when this happens when the heart slows down and almost stops! one time i felt it happening i couldnt see for a sec until i gasped for air then i saw double for a sec scary! i have seen neuroligists heart doctor endocrine doctor no one knows what that is

hi i have only had pots for 5 1/2 months but thats my main symptoms lightheadedness feeling like im gonna faint and dizzyness every now and then i get a wave of it almost like im in an elevator when it drops just a wierd feeling hard to describe if i think about it too much itll happen! i try not to...ive had mris blood work heart tests eeg alot and they can figure out why im always like that and yes its even when my bp is ok so i dont know

happy birthday! see you around the forum

ya im lightheaded all day and then i get dizzy but i havent fallen from it most o the time mine isnt that severe but for example last week i was naseas when i went to bed but i finally fell asleep when i woke up i was so dizzy i thought i was going to die i couldnt even sit up with out practically throwing up the next day i was ok again seems to come in waves i always feel like im on a boat though not spinning senation but like im moving when im not if i think about it its worse

thanks for your replies thank god for this forum its helps to talk to other people with similar problems can u recieve disabiltity with this if you are unable to work? is it hard to get?

ya i am new to this ive had since id say late april i started feeling sick diagnosed in august its **** how do you all deal with this?! ive never passed out but ive come to close for comfort with my my bp doesnt drop when i stand sometimes it will alittle but then it goes back to normal,, its just my heart rate is sky high when i stand can you claim disabilty for this illness? and how do you go abouts getting it? i mean it stinks having this at any age but when your so young its even worse...and you know somthing funny well not really, but my ex boyfriend started acting up about 3 years prior tp this illness and i was sooo depressed for so long before i got sick like 3 years and i was finally moving on from him and bam im on my *** again this time with this! some unknown syndrome that barely anyone has!

does any one else just get plain mad somtimes becasue they have POTS ? im so aggravated today like furious that i still have this i just wanna be normal i know i shouldnt complain becasue everyone has it in here, but its hard not to somtimes break down so to speak... its very upsetting to me today me being stupid i woke up late and didnt feel that horrible so i was like ooohh maybe i dont need the beta blocker now! sure enough i started walking around and bam i felt wierd i took my pulse standing and it was 100 off the back so i had to take it ,,,,everyday i just hope it will go away but it never does....i hae this its mysery i have no life now..im afriad to work again becasue i know ill feel sick and i cant keep leaving jobs what am i going to do? i have no spending money i life with my dad and stepmom he will always take care of me but i dont want to have to stay here forever i have no boyfriend anymore no job no school nothing just miserey