NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR › Reply To: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR
We had multiple failed attempts to “catch” my son’s high heart rate at the doctor’s office because he can be delayed depending on: hydration/dehydration, time of day, etc. I was so fed up not being able to PROVE my son’s inattentive ADHD symptoms were from POTS, I gave him a poor man’s tilt table and he spontaneously VOMITED. I freaked and took him AGAIN to the clinic where they told me “he must be getting the flu” after they’d only test his heart rate for ten minutes of standing. Frustrated, I bought an iPHONE, Digifit connect 2, and a Garmin chest strap and paid for a Digifit iCardio download from itunes. I strapped that strap on my son, put the Connect2 into the bottom of the iphone, started the iCardio, and put the phone in my son’s cargo pants pocket and sent him to school. I met him at lunch and VOILA! VINDICATION. PROOF!!!! Without any PE, his heart rate was as high as 150 and averaging 120 for most of the morning just sitting in class!!!! I took my son and my iphone to the doctor and showed her the heart rate chart and Voila! That Visual chart got her attention and we left with a referral to a pediatric cardiologist who diagnosed him with…. POTS. But she doesn’t care for POTS patients so she is referring him to a neurologist….
I think Dr. Diana’s latest video is spot on.. we have so many more dysautonomic symptoms than “just POTS” that saying “I have dysautonomia” rather than “I have POTS” may be helpful for us.