nikigrl8883

hi i just wanted to say im in the same boat as you as far as that goes my heart rate is highest when i first stand out of bed in the morning after i take the beta blocker it gets lower and lower as the day goes on lowest usually at night even in the 50s and i tend to feel bad when its low

yes i have been diagnosed with pots in august. i forgot to add i had a low level of dhea a hormone that is important in the body when i looked it up i found out thats really bad for someone my age and can be casued by all kinds of things all bad / she didnt focus on that at all though but she mentioned it...i honestly think she didnt want to scare me she is gonna be testing me for cushings disease now an adreneal disorder... shes just doing it becasue im weak and tired and have put on weight and becasue i had an abnormality on my pituitary gland and an elevated prolactin level before at least that went down with the meds but thats not nearly as bad as it would be if i had cushing disease..... i am on atenonol and yasmin and bromocriptine for the prolactin thing

well i went back to the hormone doctor today for the lab results and my prolactin level went from 60 to 16 which is good becasue it was too high and i do have an abnormallity on my pituitary gland but nothing they do anything about beside give me those pills for the prolactin,, supposidly it wouldnt casue all these problems i have... all my other tests were normal but i havent had a test for cushings disease so now i have to have that and go for blood work again in a few days //she was quite worried about me she did that test that the neurolgists do as well where the doctor has you hold up both arms and tells you not to let them push them down and i couldnt hold them up at all i was very weak on my legs too...she was like you wernt that weak before you were strong now your very weak ,, and ive been eating better than i was before and taking vitamins so its not becasue of that...she was like if this is normal( the lab tests ) then thats all i can do as far as it being connected to hormones... im so depressed before i could do that neuro test fine i mean ive had this since april and up until sept i could do all those tests fine now i can barley stand up im so weak and my arms are too , thats not a good sign last time i checked...i am also going to my heart doctor in dec and im gonna have him do another echocardiogram to ease my mind after that "dream" especially since im getting weaker... im very worried again ...the doctor seemed very worried too.. what do you think about all this

ok im gonna tell you why i think it may be a heart infection. Please dont think im crazy,,,one day i was very upset crying and i started praying for an answer to why i am so sick i went to bed and had this dream if you wanna call it that...it consisted of nothing but a womans voice telling me i have a viral infection in my heart caused by a common childhood virus / cockasackie virus,,she then told me there was nothing i could take for it but to drink alot of water and juice and to try t o get my immune system up as much as i can,,,i then asked her if i was going to die and she said she cant say that ,she said either you make it or you dont...it was like somone was talking to me on the phone,, it wasnt like a dream at all to be honest but i was sleeping i think..im thinking the dream was to inform me,,,i mean i know to you it proably sounds like wishful thinking but ive experiecened things like this before and they have come true,,, she also told me it was just starting and i just had this dream last month / ive been sick since late april with flu like symptoms,,,so it makes sence too..im gonna have my primary give me an echocardiogram again next month to check for inflamation//im convinced its that casuing this..im thinking that maybe the virus was in my system before attacking my immune or autonomic system and now it went to my heart...its just my intution....thank you for your replies im scared about this... i didnt say anything before becasue i know it sounds crazy

i would liek to know how you know if you have heart disease since its one of the things that can cause pots...i have chest pains all the time papaltations i sweat constantly even when im cold just walking make me sweat... ive had ekgs blood work for the heart echocardiogram and a treadmill stress test passed all of em except tachardia on stress test,,,im concerned that i have an infection or somthing in my heart (viral) possibly how do people get heart disease what is the cause of heart disease?

hi yes i have had that when i first got sick probablly the first 2 months my feet also felt cold and partially numb now i dont get that for some reason and havent for awile ...although i have noticed my hands and feet are somtimes very cold they arent purple like they use to be

thank you for the link.. i will look it up and see if i can come up with anything interesting

thank you kady

that was very nice of you,, well i dont really have anyone at the moment...i am not married and dont have a bf anymore i cant work and stay home most of the time...i have my dad but he doesnt really understand...my mom i never had in my life so i cant talk to her... my crutch has always been my faith in god through my whole life...i feel lucky that i have him

well lol once again i can relate to your symptom of the vertigo, even while lying down. i have gotten that a few times since pots started for me in april somtimes i have slight vertigo walking as well but mostly lightheadedness constantly. One time i woke up and tried to sit up and was so dizzy i almost yacked.. i was like that most of the day and then it was gone..It comes and goes you see, at least in my case...As far as your heart rate going that high and putting you on another beta blocker or a higher dose i cant say i blame you for being concerned youre already on a high amount as it is..im sure its nothing to worry about that much and probably another block in the pots road that will come and go...but id defenatly talk to the doctor more about it ..good luck

yes im quite frazzeled........

awwww....hes adorable i wanna see more lol

ok i mentioned this in other posts in the past but no one ever answers me about this im gonna fill you in and if you know anything that can help me please for the love of god tell me ..... in august i went to a hormone doctor to have my glands tested for problems that could possibly explain this illness.... adreneal function was normal thyroid function normal...pituitary function was elevated prolactin level which happens when u become pregnant which i have never been pregnant soooo i had to have an mri of that gland to see if there were any tumors or prolacomas nothing was seen except a slight enlargment of the gland borderline they called it...but no prolactomias or tuomors now since my thyroid was normal that just plum doesnt make any sence there has to be a casue for that, none of which are good, but at least can explain this illness ....im lost here there was somthing wrong with it theres no doubt about that but according to the doc that wouldnt casue any of these symptoms but it does explainmy period problems does anyone have any idea or experinced anything like this? oh i wanted to add to that i got a glass bottle thrown directly at my forehead abotu a year ago and had a slighe concussion but the the symptoms of that went away along time ago in say dec then i got ill in april....i told the doctor about that and he said no it wasnt that the concussion was gone and post concussion syndrome wouldve come a few months after not that long after....but what i find odd is that i got hit right exactly where my pineal gland is i think that messed me up i really do

the atenolol helps the heart rate though alot my bp is low somtimes and nomral somtimes so i cant tell if its from that ...wha im saying is theres been plenty of times ive gone to doctors and its been ok and stil felt lightheaed since all this ya im sure being anxious makes it worse but its like all the time unless im laying in my bed completly calm ...id like to add somthing to this that i find strange....maybe you or somone else can help me out when i had my glands tested by the endocrine doctor the pituitary showed an elevated prolactin level it wasnt right.. so the doctor made me go for a pituitary mri of the gland it showed nothing substantial besides borderline enlargemnet no sign of a tumor or anyhting/ more than one doctor saw it to...when i asked the doctor she didnt know what to tell me basically she said theres not tumor visible and your thyroid gland is normal and adreneals but obviously theres a cause right? it doesnt even make sence im wondering if my pots has somthing to do with this do you know anything about that?

My heart goes out to you. The lightheaded, off balance drunk feeling *****. I can relate to how your feeling (I think) but mine is not constant. It did just start happening after being on treatment for the past 6 months so I don't know if things are getting worse which scares the crap out of me.

I also understand the anxiety part. I am now having small anxiety attacks because of these lightheaded episodes that scare the crap out of me.

Maybe you should try a different medication. I'm currently trialing an SSRI to see if it helps with these episodes. So far no success but it's only been a few weeks.

How about trying Flornief?

Hang in there I know how hopeless and depressed your feeling I pray things will get easier for you soon. If you ever need a shoulder to lean on you can pm me.

Dayna

i actuallu have florinef from a previous doctor never tried it though its actually called fludrocortisone are they the same? dont you have to take salt pills with it? my other doctor who perscribed the atenolol told me not to take that i dont know! maybe i should take somthing for anixety too maybe nothing i dont know what to do i wonder whats casuing the lightheadeness if its an underlying thing///ive already had many tests though for things that would cause that all negative

I'm so sorry you are feeling this way. I understand how difficult it is to do everything including going to a doctor or getting blood drawn.

My suggestion is be up front with the people at the lab and at the doctor's office, before hand, if necessary.

Tell them your situation and how you would feel a lot more comfortable getting and being there if there was a way they could let you recline.

That should go a long way in easing your anxiety about the situation.

Before hand maybe you could load up on salt (via taking baking soda in water) and on fluids. That should help.

Is there someone who can go with you until you feel more comforatble with your situation?

Have you been diagnosed yet? Are you on any meds? I'm sure things will not stay the same forever, and a doctor will give you something to stop some of the lightheadedness.

Please, don't lose hope. People have improved once they are being treated.

yes the problem is i have been diagnosed with Pots thats it so far,, i am taking atentnolol for it a half of one a day i also take yasim birthcontrol pills for ovarian cysts and a thick lining ...i dont know what to do the atennolol doesnt help the lgihtheadness i also felt it before i took the atenolol ....!!!! why do i have that ive had mris transcranial doppler echocardiogram ekgs nothing everytime but yet i feel like death

hi well i went to the doctor today to have blood work done for my hormonal doctor in 5 days...as usual i felt like i was floating on air as i was walking in (not in a good way either) i felt like i could faint anytime,, i forced myself in and sat down and waited to have it done as i was sitting there i developed severe anxiety becasue i feel like fainting i hate the feeling so much and it makes me so nervous that i literally have to move some part of my body mostly my leg... i was very unsettled finally the nurse called on me when she took blood i really thought i was going down i didnt say anyhting but she obviously noticed becasue she asked me if i was ok i just told her i always feel like this! becasue its true in my case i always do it just gets more pronounced at certain times...i tried to get out of there as fast as i could,,,for the record, blood work and the doctor has never made me nervous before even as a child i wasnt scared at all...so i know its not becasue im afraid its becasue i feel so crappy i dont know what to do anymore seems like no one can help me ever and get to the bottom of this feeling....ive had anxiety since april when i got ill/ bad anxiety,,, i think its becasue my body doesnt know to react to the illness or somthign is effecting that part of me...i came home and cried i cant take this anymore i could handle it if i always didnt feel like fainting and off balance and like theres somthing wrong with my head or heart but somthing is so wrong i just know it ive had so many tests and blood work up the wazzooo nothing comes back bad besides little things nothing to explain this at all...i always feel like my throat and going down is tightning up ...this is gross but when i burp now at all i get that bile crap in my throat..and im not overwieght at all and i dont eat bad i dont think i dont drink soda...my main complaint is defenatly feeling lightheaded and floating drunk all day long that is disabling me more than anything if it wasnt for that id be able to do some things im sure of it...i need some help , some advice some comforting words im desprate now and severly depressed i cant imagine living like this forever i just cant anything but that lightheaded crap i can take

I call it "strobe vision" I've had it constantly for the past 6 months or so. The Drs told me they think it's part of my migraines. But I notice it more when I'm laying down or it's dark. I've had trouble sleeping because of the flashing. I think my husband thought I was going insane.

ya i defenalty notice it when im laying down tryign to sleep and dark thats pretty much the only time it happens to me its like a strobe light in my eyes flash fladh flash really quickly when there closed i seee the lights when there open i may feel my eyes doing somthing funny but barely ever i dont know my casue of it im guessing poor circulation maybe who knowswith us

i dont think ive had blood volume tested i dont know...and i havent had myh period this month yet so its not thatunless pots was viral im not recovering from ilness i dont know sighhhh lol i am going for that study ill ask the doc about it

i dont think ive had blood volume tested i dont know...and i havent had myh period this month yet so its not thatunless pots was viral im not recovering from ilness i dont know sighhhh lol i am going for that study ill ask the doc about it

i usually sleep pretty good tired somtimes yes if i over exert myslef defenatly i dont drink enough i guess i should and salt it up more

i just wanna compare my bp to others bp with pots to see what other people deal with .. id like to know laying down resting and standing

i have been monitoring my bp daily and ive noticed some startling things now ive noticed the longer i stand the lower my blood pressure goes and ive noticed that the bottom number is say like 75 and the top number will be like 95 there too close together in range im scared to walk the top number usually drops and the bottomnumber is still normal but too close to the top number i didnt think my bp was doing that i thought it was normal standing sometimes it is

but lately its been off no wonder i am always dizzy and lightheaded theres no winning

ok this is somthing ive been expericing since pots when i close my eyes somtimes i get these flashing lights really qiuck for a few seconds it usually goes away right away but it comes and goes alot if i opwn my eyes when im having this episode i feel my eyes jumping but i dont see the lights does anyone have any clue what this is and whay it happens

karen, yes i know how you feel about the doctors thinking pots is not a big deal its awful when i go there the doctor always says are you working now and i always say no then he says gee i wonder how much of this is pots and how much is depression or anxiety and i wanna scream when he says that yes obviously now i have depression and i am anxious about this illness but thats not what stops me from working its the physical symtpoms of pots i am dying to work but i know i cant in this position not normally anyway...so i just dont do it

karen, yes i know how you feel about the doctors thinking pots is not a big deal its awful when i go there the doctor always says are you working now and i always say no then he says gee i wonder how much of this is pots and how much is depression or anxiety and i wanna scream when he says that yes obviously now i have depression and i am anxious about this illness but thats not what stops me from working its the physical symtpoms of pots i am dying to work but i know i cant in this position not normally anyway...so i just dont do it

and i know what you mean about fmaily not understanding to they just cant really understand becasue there not in our bodies

i also get the band tighting feeling around my rib cage but not just with shortness of breath somtimes i just get it for no reason

TOTALLY all the time i feel like everyone around me is having fun and making somthing of themselves gettting engaged having kids and im stuck in this rut i cant get out of im 23 and i live at home with my dad and stepmom i had a bf but he left me even before i was sick out of nowhere i use to go out with friends to clubs and just have fun doing things i worked full time and was in college now i cant do a darn thing and yes i feel down on myslef alot ... some day i try to go somewhere like out to eat but i start getting hot flashes and feel like fainting lightheaded dizzy to the point i stay home 90 percent of the time not fun at all...these are the years i should be finding my life partner starting my career and moving out i can 100 percent hear where your coming from and its lousy... good luck

kexia,

what do you mean by flare ups? theres periods of time your normal? lucky you lol i guess imno tthe only one who cant work but with me its everyday if i stand i get sick