New Here & Some Questions

[jknh9]

Hi all,

I was diagnosed with POTS and NMS/NCS in May after a TTT, several EKGs and 3 weeks of a TCAT heart monitor. I also, evidently, have a heart murmur, but I don't think this contributes to the other things. I began having fainting spells in middle school, and they would seem to occur frequently and then disappear for a while- sometimes years. Then in college I started getting extremely sick even if I just caught a cold, and I would have other, seemingly unrelated, symptoms such as getting out of breath and tachy after climbing one flight of stairs even though I exercised a lot and have always maintained a healthy weight. Then in grad school the symptoms kept getting worse and worse, and I was misdiagnosed with panic disorder and put on Zoloft. This helped for a while, but then I went off of it when spending several months abroad last year, and went back on a lower dose. During the spring, I was tired all the time, but I figured it was from finishing my Master's. Then during class one day, I started feeling what I had thought was a panic attack coming on, after not feeling very well all morning. I stood up and left the classroom to take a breather, made it four steps down the hall and woke up with blood pouring out of my nose and people standing around me saying "911." The doctors brushed it off and said there was nothing wrong, but I persisted and saw another doctor who referred me to a cardiologist immediately. Less than a month later I had the diagnosis.

I have some questions for those of you who are old hands at POTS

My doctor is keeping me on Zoloft 100 mg for now, but says he might switch me to Lexapro if the Zoloft doesn't seem to help. Has anyone had good or bad experiences with either? I don't know that the Zoloft is doing much for me. He also has me on Florinef 0.1 mg.

As for salt loading, how much do you all usually put on? I don't like salt, so it's tough for me. And I still worry about adding too much, even though my doctor says to add it freely.

I've been finding it somewhat helpful to drink 1-2 bottles of Lifewater or Vitamin Water Zero each day. Does anyone else find this to be helpful? Are there other drinks that help? (preferably ones that don't taste obnoxious, haha!)

And the last question is pretty specific. I'm in central South Carolina and going to Columbia Heart. I'm curious as to whether any of y'all have seen doctors here or maybe other good POTS doctors in SC or maybe around Charlotte, NC.

Sorry this is so long! I didn't want to make a new post for each topic so I rolled them all into one. Kudos if you read the whole thing

[Chaos]

Welcome. Sorry you have a reason to join us here, but glad you found us.

As far as salt, my neuro from Mayo says 10,000 mg per day or more. He also insists on 2 and a half liters of water per day. I haven't been able to get that much salt thru my food, which is his preference, so I've followed other peoples' example and gotten 1 gram salt tablets. I take several of those a day in addition to putting as much salt in, and on, my food as I can possibly tolerate.

I took Zoloft many years ago and tolerated it somewhat but personally Wellbutrin (Bupropion) works best for me and I had no side effects with it, except some weight loss.

Good luck!

[misstraci]

haha, kudos to me! I read your whole thing, it wasn't that long. Sorry for your being sick and not feeling well. I can't speak for the zoloft as I've never taken it but I just started lexapro and can already tell I feel a bit better. Don't get me wrong, I still feel bad but better I think. I don't know too much about the salt issue, I just tend to eat more salty snacks such as chips and pretzels and then salt my food. Some people take salt tablets and that may be helpful for you if you don't care for the actual salting of food. I should try vitamin water, I've never had it, I drink powerade a lot and maybe it's psychological but it helps for a minute.

Good luck!

[lizababy]

I hate salt as well. I tend to eat high sodium foods in order to increase my salt intake. I have tried salt tablets but I honestly cannot stand to choke them down too often. When I really need to salt load, I will eat a couple hot dogs for a fast salt jolt but that is the Chicago girl in me :-) I also keep a lot of pre-packaged food on hand for a few reasons. First being that I live alone. This (the dysautonomia) can really wear me down and I can go for weeks at a time when it takes the life out of me just to walk from my couch to the bathroom. Cooking is the last thing I want to do. While I typically do not have much of an appetite, I know that I need to eat. I will intentionally go to the store and buy the frozen single portion meals while looking at the sodium content. I pick out ones that run in the 900-1200 mg range. It can be a big time saver when I am feeling good too!

As far as the Vitamin Water, yes, yes, yes! I try to only drink vitamin water, electrolyte enhanced water (either from Trader Joe's or SmartWater), and Gatorade. When I am feeling good, I can limit it to just regular water but lots of it. I wouldn't limit yourself to 1-2 bottles of Lifewater of Vitamin Water either. That is only 20-40 oz. It is recommended for most people to consume at least 64 oz of liquid/day. As a rule, I double that amount. I drink half in water and half in gatorade or vitamin water.

Check the DINET main page for doctors in your area. It is actually how I found my present doctor when I was struggling for any sort of help.

[RockiesGirl]

Just wanted to say Welcome and glad you found us!! Too tired now to type more but I will try to re-visit

[jknh9]

Thanks for the replies & advice, guys

Oh, lizababy, sorry I wasn't clear-- I drink 1-2 bottles of Lifewater/Vitamin Water in addition to water and decaf tea. I try to drink as many fluids as possible even though sometimes I just end up feeling waterlogged