JCO

My 20-year-old son has POTS which is severe - 75 beat jump on tilt and norepinephrine went up to 958. He had an ultrasound done of celiac artery and results suggest greater than 70% stenosis of celiac artery, but yet he has very few gastro issues. Getting CT soon. Anyone know anything about MALS surgery helping with POTS, or just with gastro issues? In other words, have POTS patients with little to no gastro issues had the MALS surgery and achieved significant POTS symptoms improvement?

My son has doppler results suggesting greater than 70% stenosis of celiac artery, but yet he has very few gastro issues. But his hyper POTS is severe. Getting CT soon. Surgery help you with POTS or just gastro? You have any other info on whether POTS patients have had gret improvement in their POTS with the MALS surgery?

Thanks so much for the encouraging words. Hopefully he gets to rejoin life soon.

p8d, did you get the Parasym and try it?

Thank you Sarah. Makes me feel a little better to where I will not be kept up at night worrying about his pulse pressure. I think I sleep worse than him worrying about him. I will definitely repeat the poor man's tilt table test over time. I am engaging in a full court press to have him seen sooner. His cardiologist that I took him to a couple of years ago just to make sure his athlete's heart was still just that - athlete's heart - says first appt is January. But have appt with his PA on Sept 26. On a cancellation list with a POTS specializing cardiologist in Dallas. But I will keep the appointment at the Cleveland Clinic in Feb no matter what. It is just so heartbreaking given that he was on a trajectory to great success in life - only to suffer this blow by a concrete wall. I just hope and pray that he is eventually able to resume the path he was on.

Thanks for all the responses. At least I now know that others w POTS have similar readings. I have contacted UT Southwestern to see if they can see him earlier than February. In the meantime, I am going to take him to a Cardiologist. Thanks again.

My son is 20 and he has hyper pots. His autonomic nervous system is turned on and he cannot get it off. Right now, he is not on any meds. He is trying biofeedback, relaxation techniques, exercise protocol (he was previously an incredible athlete), diet, supplements, etc. Did a poor man's tilt test today. Results: Lying down after 10 mins: BP 115/65 HR 63 Upon standing: BP 128/85 HR 93 So 30 beat jump in HR - indicative of POTS. But the concerning part was what happened next. At 5 minutes, his BP was 118 over 101. Repeated it again a minute later and it was 115/95. The spread between these numbers is called the pulse pressure. A difference of only about 20 is very low. Means heart is not pumping enough blood. Anyone had results like this? Any insight? Do I need to take him to a cardiologist? Should he be consuming all the salt he is taking? He has an appointment in February with Dr. Wilson at the Cleveland Clinic.