IST & POTS: Hi y'all! Hope everyone is... - Arrhythmia Alliance

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IST & POTS

Kaysmay
Kaysmay

Hi y'all! Hope everyone is staying cool. I saw another ep specialist 2 days ago after still having svt while on 100x2 flecainide. He says I have IST and POTS, since there weren't able to bring svt on during my ablation and also from reviewing my records. I'm now on Corlanor and Midodrine. Please any one with any advise, experience or just words. I am just frustrated and scared to return to work. The meds make me loopy and tingly. I was also adviced to wear compression socks and try out light exercise. I'm tired. Thanks in advance for your responses.

3 Replies
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Hi Kaysmay,

I'm glad I'm not the only one trying to stay cool, I feel like a vampire :) I'm currently on midodrine which we're slowly increasing the dose. I find it a bit warm to wear compression stockings at the moment but stars website is very informative on tips. Have you been to see occupational health for your job?

Take care

Marge

Hi Kaysmay,

You have my sympathy, I too take 2x100 Flecainide per day and still get short runs of palpitations which is annoying. I had an ablation for AV node SVT 22 years ago which worked well but over the last few years developed lots of ectopics and some svt again. I recently had a failed ablation for this (they could not stimulate the arrhythmia although they’ve seen it many times on my loop recorder) and the specialist mentioned IST to me. I have had these palpitations problems on and off for nearly 40 years and am still here, so don’t panic but do get checked over to see if you have a structurally sound heart. You can spend ages worrying about this, looking for causes and triggers but will likely not really get to the bottom of things. You can have loads of drugs and procedures but, in my case, I think I just have to think positive thoughts (life is for living not panicking) and live with it. I’m sorry not to have more positive news but don’t take too many drugs and the very best of luck to you.

James

PS: if you do find a good solution please post it.

Hi, I am thinking about scheduling a 2nd ablation for AVNRT SVT. I take 50 mg flecainide 2x/day. I still feel palpitations. I worry a lot about the next full 230+ bpm episode.

I'm 48. I've known about my SVT for about 13 years, though I wasn't officially diagnosed until 2 1/2 years ago.

I don't expect to ever resolve this but will probably keep trying. I find it disappointing, that the professional answer is to just try stuff and try not to worry.

I hope you get an answer/cure! If you do please post!

Liz

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