Hopefully though, I will get into Dr. Diana’s clinical trial and there will be no need for me to spend thousands at the Mayo Clinic.
I too have a crazy high heart rate on standing. It can go as high as the 150’s, but it only has to get to 120 for me to become SOB (short of breath). Funny, I have it all on video (wearing a heart rate monitor) but I can’t even get POTS testing. I was diagnosed by a ND (Naturopathic Doctor) using the poor man’s TTT (BP & HR laying down and then standing).
When I am depressed, coming to the Forum helps me feel better.
Aww, MJ, thanks for that… Absolutely. Although we all have funky genes and are special in many ways, I have no doubt that our study medications will stop your POTS and dysautonomia. Now, we likely have other issues, but getting rid of that has been a God-send, I must tell you. Were you able to try mast cell meds (Zyrtec, at a minimum)? If that helps, enjoy it! However, I’ve learned that we need more than mast cell treatment. One mast cell doctor I know thought that mast cell meds would do it 100%. Rats, no, but the rest is not expensive, and I can hardly wait to show this!! Meanwhile, I waited 9 months to see a “POTS specialist” who also DID NOT EVEN TEST ME (years ago). I understand your frustration. On the TTT (finally!), my heart rate went from 75 to 164 in 10 minutes. Every year, I went to Mayo to have it rechecked, and it was either identical or worse (BTW, we got “pre-covered” by my insurance company to go to Mayo.) Soooo discouraging. Now, no POTS or dysautonomia. Zero. And it only took me NINE YEARS to figure it out. (ha). I’m soooo glad that coming to the forum helps you to feel better, my friend. That is one reason it is here. Hang in. I’m working with researchers and attorneys to get the studies in place. Yea, attorneys… and you thought doctors were hard to deal with?! Big hug, Diana