medicalenigma

hmmm... i am questioning if I really do have POTS... i am really in the minority here... I have major edema so obviously my body holds fluids too well.... though I am starting to wonder if it is because I don't drink enough and my body goes into like a starvation mode, except with fluids and holds them but again, I am NEVER thirsty... that in and of itself is very strange.... always has been... if I drink 20 oz of fluid a day it's a ton... and I know, that's far too little but I too pee all the time, with or without fluid but don't have diabetes. I am going to try to push myself more and drink more and maybe also supplement with electrolytes.... my potassium is always borderline low, but i don;'t want the extra salt... i wonder if those packets come without extra sodium???

p.s. i have been too sick to get back to my pots dr. ;(

no denitely not bloated... i am swollen..... i have spoken to my dr and he just says it's from tic born infections i have and my weight gain is from my metabolism being wrecked.. i don;t buy it... i have gained 35 lbs in the past 3 mos.

I was reading in another forum that edema can be associated with POTS. I have full body edema (gained so much weight and look like blown up like a balloon) and i am wondering if it can be associated with POTS or other forms of OI. I also have high blood pressure, which may have been caused from the swelling or vice versa and i keep reading about POTS being treated w/ increased salt intake... i am afraid if I increased salt, my bp would skyrocket... my dr told me to avoid salt (not my dr evaluating for POTS but my primary care dr... he said salt will make my swelling and blood pressure even worse. Any thoughts on this?? Is there a connection? Also, if some POTS patients DO have edema and/or hypertension, wouldn't recommending salt be counterinuitive??? Thanks -Nancy

for me, i never feel rested.. whether 8 hours or 20.... i don't remember the last time i woke up and felt like i slept.

hardly enough... i am almost never thirsty unless i am outside and i dehydrate quickly, especially in the arizona heat.

hmmm... no responses?? has anyone else heard of this or is this the only place that does blood work for OI/ POTS?

i was contacted by a nurse at mayo and told I need to have additional blood work.. one of them being an orthostatic ...something test (catylcholine or something like that). I will have to drink something and they will test my blood over a period of an hour.... does anyone know what test she is referring to and what it is exactly? thanks for any info! I am having this test along with other blood work requested by the dr. -Nancy

I do know how you feel about the heart pounding.. i went on a new machine the other day at the gym... normally i use the stationery bike but i decided to do one of the higher impact machines where you stand (kinda like a stepper where you also use your arms)... well, within 5 minutes, my heart rate went from 90 to 170 and I almost passed out. I was so upset.. i wanted to keep going but i couldn't.. now i know for now, i have to stick to the stationery machines where i am not standing up... it is hard enough when i am sitting up. hope you're finding a routine that works for you!! -nancy

hi there.. i live near phoenix... i am seeing dr. goodman at mayo (he is with neuro).. hope I can mention his name... it takes a few mos to get in with him but well worth it because he is an autonomic specialist. Don't have the direct number but call the general number for mayo clinic in scottsdale. You will have to have a phone "interview" with the nurse to make sure you are appropriate to see him, but if I can get in with all my stuff and some stuff that is not legitimized (CFS/fibro), i am sure you can. Good luck and let us know if you see him or anyone else. I also know of someone in Tuscon but didn't hear such great feedback on him. best, nancy

chronic fatigue syndrome is often associated with dysautonomia (POTS)... i have cfs along with tons of other diagnoses... there is a huge connection, i believe with the immune system and the development of autonomic dysfunction btw.. i suffer all the symptoms you listed. Also have low vitamin D... still not sure if that is partly a cause or result of chronic illness. best, nancy

since joining this forum not too long ago, i learned that many people w/ dys.. have severe fatigue, but not all... in my case, my fatigue (mental and physical) is crippling and i become exhausted easily.

I also can understand what you're going through. In this world, we are taught to define ourselves by the work we do and are made to feel useless and non productive when out of work... i too have not come to terms with being out of work and somewhere in my fantasies, dream of going back though i know my body can't take it. Only thing I can think of is, if you go the disability route, don't give up on other stuff... find as many hobbies as you can to occupy your time and find what makes you happy outside of a career.... i know it's hard but possible. Also, know that there are others out there that really do feel for your situation and can totally relate to what you're going through. -Nancy

hmmm.. for me i am not sure if mine skips beats but i have horrible palpitations when lying down and when awakening... feels like i go to bed and wake up with a panic attack... wish i had some advice for you. Hope things get better. I have been sleep deprived for 15 years and people do not realize what that can do to your body.

For me, hanging up laundry or anything that forces me to bend, like cleaning bathtub, etc. Also... for personal tasks, have alot of trouble blowdrying my hair or anything that requires me to hold my arms above my head.