@Davidinaz She's had multiple EKGs that show frequent PACs and an echo that showed mild mitral valve prolapse with regurgitation. We've seen 2 cardiologist and both say her heart is fine and that's not what is causing her symptoms. She's had a 24 hour holter and a 72 hour holter, both just showed sinus rhythm with sinus arrhythmia with frequent PACs. However the frequency increased from 8% with the 24hour to 13% with the 72hour but they didn't seem to think that meant anything. They were taken about a month apart. She was diagnosed with Orthostatic Lightheadedness. When I mentioned POTS both cardiologist said it was a possibility, but then went on to say they thought she had anxiety issues or was deconditioned or some other frustrating answer that wasn't a real answer. She's an athlete and not deconditioned in any shape form or fashion this started on the softball field, she plays school ball, league ball and travel ball, plus she plays in a basketball rec league. She does have some anxiety now, but who wouldn't with her heart rate bouncing all over the place and feeling it constantly fluttering around.
I can find only Dysautonomia doctors in my state, the one in the thread above and another, but her doesn't get very good reviews. I've started taking resting and standing readings with a blood-pressure machine and recording them, we ordered her a google fitwatch that does continuous heart monitoring and charts to an app. She also having insomnia issues even though she's fatigued and exhausted.
I asked her the other day if she was feeling a little better because she wasn't complaining as much. She said, "No. I'm just getting use to feeling like crap and feeling like my heart is going to jump out of my chest." It broke my heart. My child should not have to get use to feeling like this.