POTS

[JCappiello]

Hey everyone.. Since I came very very close to passing out this morning I was wondering -Those of you with a POTS diagnosis.. What meds were you given and have they helped?  The electrophysiologist gave me floricef 0.1 mg and told me to wear compression stockings, but he was very straightforward and told me this will be a process of trial and error.  I go for another tilt table test Feb. 5th to see if there is any improvement..

[JCappiello]

Hey I was wondering how your tilt table test went?

Also to everyone else - the Florinef is making me feel horrible! I gained 6 lbs in 5 days and got very swollen.  My electrophysiologist told me to cut the pill in half, but I just don't think it is agreeing with me at all.  It makes me feel extra tired and weak.  I'll let everyone know how the tilt table goes on the 5th...

[JCappiello]

I got yah! I just recently graduated myself with a degree in the field I am currently working in.  My electrophysiologist did say that it is possible for POTS to resolve on its own, but statistically speaking 25% of people diagnosed with POTS end up on permanent disability... I pray I am not that 25%.  

[RheaAnn]

It was a lot for a long time! Most of it was during the summer in Louisiana's hot, humid heat! That is pretty quick. I am no longer on any meds for that. I am taking all sorts for other issues, though. I can work if I want to, but I'm a full time graduate student, so I've no time! But I do take care of my grandma, which requires lots of squatting to standing (which almost always triggered an episode!).

[JCappiello]

WOW.. that is a lot of times to be passing out!  I don't pass out nearly that much but constant near passing out episodes.  Along with the POTS I was diagnosed with vasovagal syndrome as well. The Dr. seemed very concerned because it only took me 5 minutes to pass out and according to him that was extraordinarily quick.. I am so glad you have no symptoms now that is great.  What meds are you taking and are you able to work now?

[RheaAnn]

I did not go for repeat tilt tests. I was averaging passing out 2 per day! Which means, some days I had no episodes and some days I passed out over 10-15 times! It was miserable! I had to move back home with my parents. But because I passed out so often, I didn't need a test to tell me if the meds weren't working! I even had a monitor implanted in my chest because the doctors thought there was no way POTS was that bad and could have been responsible for my episodes. But it was! I was labeled with POTS, neurocardiogenic syncope, vasovagal syndrome, dysautonomia, and others.  And after a while, we found the right meds and I knew the triggers. I know how rough it is, but keep hope alive that it will resolve! I still cannot believe how I have no symptoms now!
Best of luck on the 5th! Let us know how it goes!

[JCappiello]

I'll look into that.. thanks!