HeidiC wrote:
My sodium levels have always been normal too; in fact, they've changed very little even though I'm pounding sodium now (7000-10,000 mg/day). I just looked back over all my bloodwork and even when I was at my untreated worst my serum sodium levels were fine. I think there's some difference between how they measure sodium in blood tests and how sodium functions in dysautonomia; seems like I read something but I can't find the reference. I figured it out because when I googled my symptoms, that's what kept coming up and the more I researched, the more it seemed to fit what I have. I think in your case there's at least some chance that what you're getting could be a sub-clinical neuro-cardiac syncope -- not enough to make you pass out but enough to make you feel nauseous. That's essentially what I had/have. Not that I'm diagnosing you, mind you. I'm not an MD; just a lowly PhD, lol.
If you go to the Dysautonomia International website, they have a Doctor Finder. My doc wasn't on there, but you might be able to find one that way. If you don't have high blood pressure, you could try some sodium supplementation, but you do have to take a lot; it's not just putting extra salt on your food. I take a medication called fludrocortisone to help me retain sodium (and water -- not so awesome but better than feeling like I could vomit at any second). BTW, before I got diagnosed, it seemed like whenever I checked my BP it was high, but that's because it was just really unstable.
ETA: It's not just increasing sodium -- you have to increase water intake as well. The point of the sodium is to help you keep the water in you. It's the fluid that stabilizes your bp.
Wow! It's amazing that you were able to figure this out yourself. I always have the feeling that whenever I google my symptoms I could go in so many different directions and almost every single diagnosis is more than severe. I just checked their website. Unfortunately, there isn't a specialized doc in my area. I wonder if I could go to a topnotch cardiologist in town to at least get things started. I have always had pretty low bp, but during the past two physicals I had the nurse indicated it was high. When the doc measured it minutes later, it was low.