nikigrl8883

well ive had skipped beats and stuff too they come and go // but that is scary dont tell me that about dying lol...if uve talked to the doctor and he cleared u i wouldnt worry too much but i know what u mean/ its not fun

well that happens to me somtimes too but not all the time like u seem to have...i have no advice except your not alone and from the symptoms list ont his website that one is on there so its common with pots people...it is scary yes...i am scared because my heart races when im sleeping out of nowhere i wake up with it zooming away...but im sure its not a big deal especially if youve had heart tests for it....do you take a beta blocker?

ya i knwo what u mean i havent fainted either yet but once i cam too close everything went black but i sat down just in time before it happned

lol i plan on taking a zanax before i fly ...im scared to go but hey once i get there i should be ok its just the airport and the flight im scared of... i have flown 3 times before so its not new to me but i still hate it especially now i will!

yes normally i dont know what my bp was i didnt check

im a righty too sorry lol

thank you for sharing your experices with this fun fun experience lol.....i think it is the pots and possibly the low bp thing because when i lay down my bp gets really low....but people can also have panic attacks in there sleep where that happens too....but with me its probably the pots as well

hi my dad has a trip planned to orlando this month after xmas i am so scared to go but im going for a week/ i am afraid to fly is my main thing ....once i get there i can just lounge around at the resort...do you think i should go

how do you check your catecholmeans? is that when you go to the endocrine doctor? ive had my thyroid and adrenal checked and pituitary/.,,,,no one said anything abotu that so i dont know

i guess it pots related then unfortunatly for us...not a fun symptom, i wish i knew what casued it maybe hormones or maybe its just the dysaumia who knows but at least im not the only one although im sure its not a club many would join lol

yes ive noticed that with people too ...i think people feel awkward becasue they dont necessarily know why your in t he wheelchair (for all they know you could have cancer)and they dont want u to think they are staring at you ....im not in a wheel chair yet lol...but when i sprained my ankle awile back i noticed that as well and i notice it with other people

hey i just came back from the doctor (heart) and he did the ekg again to test my heart it was normal again...he plan out said he didnt know what was wrong with me and to follow up with the hormone doctor...so far everything comes out normal not that i want somthing horribly wrong but its just frustrating that i never get to the bottom of things i do have pots though thats the only thing ive been diagnosed with so far and i have a slight abnormality on my pituitary gland not a tumor i have taken the pills for the prolactin level being high and it has gone down to normal...i stil have to take it of course and it makes me feel like crap at night but according to the doctor the abnormality on the gland isnt casuing all this unless its throwing my hormones off somhow ,,,which when they do the blood work the main hormones....thyroid adreneal that would casue this are ok....sighhh i have one more adrneal test for cushings disease the one for addisons i passed...after that im on my own again

WW2,

im not really short of breath just extremly fast rate i dont even check to see how fast lol i dont really care to be that scared...i noticed u have a thyroid condition,, i dont yet...i dont know what to do ive had alot of heart tests and blood work im actually going to the doc tomrrow and tell him all about this..once im awake i take a few deep breath and it slows it down within a min or less so once im awake it stops doing it .....although the reason it happens at night i have no idea..one time i was dreaming i was in my car driving and i lost control of the car on the hwy i was speeding really fast and just as i was crashing i heard somone in my dream say you wont die of a car accident youll die of a heart attack and i woke up with my heart racing liek u wouldnt belive...scary yes

i have had a holter monitor before once for 24 hrs it of course didnt speed that day or night lol...that was when i first got sick in like may or june i have had alot of ekgs done since then all normal i have also had an echocardiogram in august normal but i want to have another just to be safe .....ya it happens as im waking up but i wake up becasue its happening...it wakes me up but im dreaming when it happens usually...i mean laying around not sleeping it doesnt do it, only when i stand of course....but i mean it will be racing like u wouldnt belive waking up like i ran a marathon.. it concerns me of course,,, ive also noticed i am extremly sensitive to stimuli now / like a noise i jump if im relaxing the slightest thing i m jumping outta my skin

i dunno its wierd because it has happened other times when i wasnt having a nightmare just sleeping and i wake up like that i dont know what it is ....my heart doesnt race unless i stand so i dont know why it does that unless its panic attacks...i dont snore at all so if i have sleep apnea its only once in awile it doesnt happen all the time....and i know i dont snore so if i do have apnea its the kind where u dont snore ....just another mysetery

hi ive noticed that i wake up at times with a racing heart (really fast beating) it usually goes away after like 30 secs....are these panic attacks? ive only gotten like this since ive had pots ...it hadnt happened for awile and then lastnight it happened again...i was dreaming having a somwhat bad dreamand i woke up with my heart beating out my chest...does anyone else get this ? is it pots>? or panic or both? it scares me though i never use to have that and ive had horrible dreams in the past///never got the racing heart once

im very happy for you congratulations...! i cant wait to have my own someday

morgan,

i know people seem to be loosing wieght and not gaining it from betas thats what i meant by saying i feel alone in this...most people cant keep weight on ,which is how i was before i went on beta now im opposite thats why im posting about this....

Has your activity level lowered a lot since you developed POTS?

Are you drinking a lot of gatorade? I know it helps us a lot but the combo can cause weight gain.

yes my activity leel defenatly is gone// not that much gatorade no...somtimes but not enough to cause wieght gain....funny no one seems to have had this symptom im surprised

HI! Are you taking florinef? I gained a lot of weight on florinef, like 20 pounds in a couple of months. As we've played with my meds, stopping the florinef I would loose it just as fast. start it and it would come back. Right now, I'm on my full dose and am only about 5-8 pounds heavier, I think thats b/c I have had some more activity, but the bottem line is that gaining weight just STINKS!

no im on atentolol 12 mgs low dose but still wieght gain! i think its partially the pills and partially not doing anything for along time along with eating alot thiking i need to eat more to feel better

Hi Nicki,

I was diagnosed based on a combination of my lab results and the doctors clinical findings. My labs came back negative the first time (on the ELISA test), and quasi-positive on the 1st western blot (band 41 was positive but nothing else). My most recent labwork shows that two bands are positive (bands 31 and 41) and three bands are "indeterminate" (meaning they aren't stong enough to be declared positive). The CDC requires that 5 bands be completely positive for an official "positive".

But, as I said, since I have all the symptoms of lyme disease, a history of tick-bites, and my labs were quasi-positive, the doctor felt pretty confident that I have lyme disease. However, we can't say the diagnosis is iron-clad until we see how I do on antibiotics, so in essence, there's still a bit of a gamble involved.

Many people test negative for lyme, sometimes multiple times, before getting a positive test. That's why most lyme-educated physicians know to look at the clinical findings in conjunction with the blood tests. Unfortunately, many physicians haven't read the most up-to-date literature on the diagnosis of lyme disease, and are ignorant to the fact that a negative lyme test DOES NOT exclude lyme.

I hope that answered your question

I gained over 20 lbs last summer when i got sick- i think lack of excercise- it was cut in 1/2. i was just so weak and fatigued. i was on gababpentin since being dx, and this summer added midodrine, florinef, and nexium. i have tried to get it off. and i have lost about 10lbs- but i think its more from my reergatation problem. ****, its ok- ive at least lost some weight out of it!! but i understand how frustrating it is gaining weight- and i am sure it si just as hard for the ppl that keep losing! but meds can really change your weight- even if u dont change anything else. Good Luck!

in how short of time did u gain weight from when u were on the beta blcoker? becasue i gained it all pretty fast befoe august i was 112 august i was 117 now im 125

well i guess im a loner onthis one! i wish one person at least could relate ill have to tell the doc this right away

hey i am curious to se how long people in this forum have actually had pots or pots symptoms....and when and if they found out what casued it (how long it took) ive been sick since late april and had the pots symptoms i belive since then....not sure what casued it yet,,,,but who knows maybe it is lyme lol ///im willing to try everything to stop this ....also have your pots symptoms worsened over time or gotten better.....

dizzy, im gland your getting somewhere and i wish u the best of luck with the antibiotics hope they work for you...i dont know if you answered this when i asked you....where you actually diagnosed with lyme by a blood test? or is the doctor just going by your symptoms? i am going to try to get antibiotics to try somehow for lyme///the only thing is ive only been sick since april are there ticks around before april? i thought they cam out in may and summer months...ughhh how long have you had pots out of curiousity