← Return to Looking for People Diagnosed w/Autoimmune Autonomic Ganglionopathy

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@jsimmons74

Well it has been an interesting year. He saw a POTS cardiologist, but hated the way the heart meds made him feel. We started him in biofeedback with a functional neurologist 3 times a week for 3 months. He did that during the spring of last year while focusing on exercising and losing weight. He passed his heart stress test and was allowed to leave for the summer to attend Drum Corp which is a very physically intense activity. He almost ended up in the hospital from cramps and dehydration the first week, but once he got his electrolyte intake up and stable he was able to continue with the activity. He made it the whole summer. I think the intense activity along with the biofeedback and functional neurologist helped reset his neuro pathways! he is almost "normal" now. He works out daily and has no leg issues anymore. His heart rate still jumps up, but he has never passed out. He will be doing Drum Corp again this summer. I think the combo of the 3 things really helped him bc he refused to take the medicine and he has no major issues anymore 🙂
Thanks for checking in!
Julene

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Replies to "Well it has been an interesting year. He saw a POTS cardiologist, but hated the way..."

I appreciate the update, @jsimmons74, I hope that he continues to keep the symptoms under control.

Many heart meds do have uncomfortable side effects. These side effects often dissipate after several days/weeks of use and sometimes a change in meds is necessary in order to find just the right med that helps without causing a lot of discomfort.

How long did your son use the heart meds before stopping them? Did his doctor try different dosages or types of meds?

@jsimmons74, I love the picture of your son. I used to play in a marching band (French horn). He's certainly fit to be carrying an instrument that size and doing all the moves while playing in the heat of summer.

The only issue you'll have now is your heart jumping out of your chest with pride when you watch him. 🙂