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.

yes, I totally understand..i was totally active also.... was on sports teams, worked out, etc....now i get exhausted simply by standing and sitting up. Sorry you are suffering too. Caffeine has been my savior, however, my resting heart rate is already so high, I am supposed to be totally off it and on beta blockers for heart rate and bp but last time I was on beta blockers, i was unable to drive due to extreme sedation and dr wants me on it long term.. where i live, if you can't drive, you can't get anywhere so total sedation not an option best, nancy

amy, I am so sorry to hear you are in a wheelchair and are suffering so much. I too have lyme disease (and coinfections) PM me if you want to chat. I am new to this site Best, Nancy

i have constant nauseau that comes and goes as quickly as it appears... very strange,, usually have no appetite when it happens and a sick feeling in stomach.... i have been taking promethazine (phenergan) for nauseau but it is raising my heart rate, which i don't need... i have also tried zofran- did nothing for me and compazine (was horrible).. all these meds make my heart race but the nausea is overwhelming and I need some relief... for those that suffer with nausea, what do you take? Also, is this a POTS thing? Thanks, NJ

also.... may i ask... my dr is considering reglan... don't know too much about it.... are there many side effects that deter people from taking it?? thanks

hmmm... when I have reflux... i feel it big time and it usually comes along with other gastro problems for me (going to be tested for GP). As for fatigue... don't think my reflux causes fatigue.. never heard that before.

i have had periods where my legs and other parts of my body were burning hot, especially my stomach and then other periods where my legs were freezing cold like they were submerged in ice. My body temp changes alot too and I once worshiped the sun and heat and now the heat aggravates my symptoms, which is pretty difficult being I live in Arizona. As someone else said, makes sense that our body temps would vary too... i always refer to my body as a broken thermostat.

Linda I am so sorry you were treated this way by those who you are supposed to put trust in. My heart really does go out to you as I had the same thing happen to me last month when I was in the hospital... not for POTS but for another diagnosis I have... drs wouldn't believe me and said I was a perfectly healthy 35 year old blah blah blah. I had to get a hold of my medical records for something and I actually read through them (NEVER do that by the way unless you have very thick skin!!!). The drs wrote about me that I appeared anxious and depressed and that my "alleged" medical problems did not show up on their testing (which was basic blood work btw) and that many of my "alleged" medical conditions were probably manifestations of anxiety and psychiatric referral was recommended... by the way.... before my surgery, my grandfather passed away the day before and I was paralyzed from neck down and in the worst pain of my life and we didn't know if i would ever walk again so who woudn't be anxious??? As for my "alleged" medical conditions, I gave the drs at the hospital names and numbers of my specialists who could have told them more about my REAL conditions but the idiots never called or requested any records or a specialized test that showed evidence of my illness in black and white!! I for one have no faith in drs anymore... there are a few good ones still left but finding them is like finding a needle in a haystack!! (and I speak this from being a long time patient and also having worked w/ drs in the healthcare field) I hope this lack of understanding and pure cruelness does not happen to anyone else here and again, I am so sorry it happened to you -NJ

I was just wondering... all i am doing is sitting at my computer desk and the fatigue i feel is crippling... i have to lay down only an hour after i woke up....i feel so debilitated by this mental and physical fatigue, i have not had the energy to even take care of myself lately.... can this be from POTS?? or perhaps it is from other issues going on with me. Thanks for any insight. I don't even have the energy to respond to other posts that i wanted to. -NJ

I recently had a spinal cord injury- severe spinal cord compression at c 4-6 due to herniated discs.. had to have surgery as I was almost paralyzed from neck down with excrutiating nerve pain and numbness. Ever since my surgery, I feel that my autonomic problems have come back and are worse than ever (right after surgery and before my nerves hadn't re-generated, my dysautonomia was almost non existent... as soon as my nerves began to regenerate and ever since, my symptoms have been horrendous. My dr diagnosing the OI wants detailed info about my injury and surgery and feels it could have played a major part in worsening of my symptoms.... my neuro surgeon, however does not concur and thinks POTS is a bunch of ... Anyone with spinal cord injury and worsening pots?? I did read that some people can develop POTS after cervical stenosis, which is what I had, along with cervical myelopathy thanks for any insight into this! NJ

Corina, I am new here and to POTS but I didn't realize it is so illigitimized by drs. I am sorry you have gone through that. I have gone through that with most of my other diagnoses. I've been tentatively diagnosed by a dr at mayo... i wonder if that makes a difference or if they'd not believe him either? How frustrating these illnesses are where you have to fight so hard to prove you are ill on top of dealing with such debilitating symptoms. Hope you were able to get the help you need. I will be trying to get rehab once I am fully dx'd because I cannot exercise on my own and am weak and all muscles atrophied... best NJ