Kay107

I have had several regular EEGs, and a weeklong in-hospital EEG. One of them supposedly showed an actual seizure during the test (though I had no symptoms) and resulted in a year of anti-seizure drugs which worsened my then undiagnosed POTS extremely. The next neuro who looked at the results said "reading EEG's is an art" and I did not have a seizure during the test, nor do I have epilepsy.

I have a lot of sleep issues as well and considered melatonin. I looked it up first and read somewhere that POTS patients do not do well on Melatonin. I am not sure of the credibility of the source, but I just didn't want to risk it. I went to a nutritional supplement store and tried a few of their nighttime recovery products. I settled on one that helped me get to sleep and stay asleep, and brought it to my nutritionist so she could make sure everything in it was ok to be taking. She said it had a lot of good stuff I need anyway and the only ingredient she didn't like was sucralose but there isn't very much. Perhaps try other avenues before the melatonin? I understand your hesitation, and I have heard from friends that if you take it consistently it is very hard to go to sleep without it, but I never did try it myself.

My symptoms first appeared after a terrible case of scarlet fever at age 9. I often wonder if I had chicken pox at the same time because while niether myself nor my parents remember me ever having it, blood tests show that I have already had it. My grandmother has almost all the same symptoms as I although she remains undiagnosed, and two cousins on the same side also faint. So it almost seems as though I had a genetic predisposition to it and the scarlet fever set it off.

I was classified as high risk solely due to POTS. The doctors didn't know much about POTS so they asked that I not exercise etc to keep my HR down. The maternal-fetal dr. did ask my EP to write an explanation of the anesthesia I was allowed to have in case of C-section, which we did end up needing. I was very sick the entire 40 weeks and had to have my parents stay with me as my exhusband was away for work almost the entire pregnancy.

It takes me forever to fall asleep and then I often snap awake and once again take forever to fall asleep. That and the breathing problems are two of the most frustrating symptoms. The only thing I have found to help with the sleep is a nighttime recovery drink that I bought as a supplement to my weightlifting regimen. I tried a few different types and settled on one that worked the best. I fall asleep much quicker and stay asleep all night. There was one I tried that had the opposite effect and I snapped awake every single time I fell asleep the night I took it, it was horrible. So there was clearly an ingredient in that one that did not go well with my nervous system.

Definitely. Higher HR and increased fainting when I'm sick.

I agree with Naomi that it can go either way. I was on meds then stopped when I found out. During the pregnancy I was worse, and the morning sickness lasted the whole 40 weeks (one of the few studies I found mentioned this happened to all the women. But it was a tiny study so I wouldn't take it too seriously, it could have just been me). Then I was much much worse in the four-ish months after giving birth and had to go back on meds even though I was bf-ing so I wouldn't faint holding the baby. I finally evened out though. If I ever decided to try for another it would have to be during a time I do not have to work, because there is absolutely no way I could have worked through any part of that pregnancy.

I barely ever get thirsty and I will only drink very cold beverages, mostly ice water. If it isn't cold I am pretty much never thirsty enough to drink it.

I have always hated hot tubs and inch into the shower or bath even when the water isn't that hot. Never knew it could be related to my POTS!

Yes, I had already been diagnosed when I became pregnant. I chose to go through the pregnancy without meds, and my OB sent me to a high risk OB to consult and make recommendations about my condition. The high risk OB said there is not a lot of research to be found on POTS and pregnancy but was able to make suggestions based on what he did find. The main thing that was done, and I can't remember if it was the high risk OB or my EP who wrote it, but someone wrote a letter to the hospital anesthetist to have on file in case I had a C-section because they said I needed a different cocktail of anesthesia so my blood pressure wouldn't drop. I did end up with an emergency C so it was good that paper was already in my file. Good luck!!

Before I was properly diagnosed a neuro 'diagnosed' me with epilepsy. He said I even had a seizure during the EEG (though I felt no symptoms whatsoever). The anti-seizure meds made my symptoms so so much worse. I couldn't stay conscious for any amount of time, just passed out every single time I stood up or sat up. He sent me to a different neuro who said that "reading an EEG is an art" and I did not have a seizure during the EEG, nor did he think I had epilepsy at all. He put me in the hospital for a week with continuous EEG/EKG monitoring and that was how I finally made it to an EP.

My breathing is also like that on or off the Midodrine. Most uncomfortable symptom!

I would weightlift. You could start off small with light weights and a program with POTS friendly movements and go from there. I'm not sure of the severity of your symptoms and what you would feel safe doing, but even if it's a rough beginning, conditioning your leg muscles might help with your hypotension. I weightlift 5 days a week with a cardio workout two to three days a week.

I can work. I have been living with pots since I was 9 so I don't really know what it would feel like not to have it, it is my 'normal'. I have flares that do make life harder but hopefully those don't become permanent.

I only see an electrophysiologist.