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
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.
What a great idea; and so inspiring. Perhaps I will request the ACTUAL results of the Halter Monitor – meaning, not just the write up that says everything is normal. This at a min. should show a tachycardia and arrhythmia on standing. If I can’t get my hands on that information, then I may try what you did. ACTUALLY, WHAT YOU JUST SHARED MADE ME REMEMBER SOMETHING! OMG – I have ON VIDEO from a few years ago, me wearing a Polar heart rate monitor (with chest strap). The video shows CRAZY fluctuations in my heart rate, but unfortuanately, the Polar does not track/detect arrhythmias. I remember one video my HR went from something crazy like the 120’s to 45 just because I bent over.
I also have a video on my phone; I call it CRAZY VEINS. My veins – all over my body – are WAY distended with blood pooling in hands and feet. So much so, that it makes me SOB (short of breath). You have to see it to believe it. And when I raise my arm, which drains the blood that pooled in it, I am no longer SOB. I’m not technical, so I’m going to try to get some help and put the video on YouTube, and then I’ll post something here on the forum asking people to watch and comment. If my veins are that huge, I can only imagine what an MRV would look like!
It’s just so exhausting; the energy it will take to do all of this…but maybe this time it will pay off.