I’m already back at Mayo and a few days into my trip! I flew into Rochester on March 22nd, and had appointments on the 23rd. The flight went smoothly, but walking through the airport takes so much out of me. On Friday I had two appointments, one with a gynecologist to have a consult for the possibility of endometriosis ,and one with an autonomic neurologist to talk about / confirm my POTS diagnosis.
The gynecologist visit went fine, but was super inconclusive. He didn’t think I have endometriosis but had no explanation for my super irregular periods. The only way to truly know if you have endometriosis is to have a laparoscopy, but he kind of beat around the bush when I asked if that was something I needed to do. At this point I’m probably just going to continue tracking my periods, and if it’s still an issue later on go see another gynecologist for a second opinion, but endometriosis isn’t a huge concern of mine right now.
I absolutely loved the autonomic neurologist! He confirmed my POTS diagnosis, by evaluating my autonomic testing results, and doing a very thorough neuro exam. He thinks I have hyperadrenergic POTS, and had me do a weird blood test to test my norepinephrine levels. First they place an IV, which took them over 30 minutes and 3 sticks before they got it, because my veins sucks. Then you have to lay completely still in a quiet, dim room for half an hour, in order to simulate what your norepinephrine levels are like while you are sleeping. After that, a nurse comes into the room very quietly, and you cannot speak to them or move while they draw the blood. When they’re done, you have to walk around for 10 minutes (or at least sit up in a chair if you can’t walk) to raise the norepinephrine levels, and finally they draw your blood again. I’ll get the results back from that by the end of this week.
The neurologist went over all of the “lifestyle changes” that are supposed to help with POTS, like eating tons of salt, drinking a lot of water, exercising and wearing compression garments to keep your blood from pooling. I thought it was interesting that he recommended wearing compression style shorts and a shirt under your clothes, because I’ve seen a lot of people with POTS use thigh-high compression stockings. According to him, the blood pools in your thighs and abdomen mostly, so those stockings won’t be as much help, unless you get the ones that go all the way up above your belly button. I really hope making these changes will be helpful, but I know they don’t work for a lot of people, or at least aren’t enough to make them functional.
He talked about putting me back on corlanor if after I try these non-pharmaceutical things, and they aren’t enough. He believes that it might work better for me, when I have a higher sodium level in my body. I hope all of this helps, because I have not been doing well at all. The gastroparesis has caused me to be widely nauseous and not able to eat very much, and the POTS has made me so incredibly tired and light-headed. Add traveling to the mix, and you get one very exhausted spoonie. The neurologist thinks I have mast cell activation syndrome as well, but since I have so much other stuff going on right now, we’re going to hold off on doing more testing for that. Given the dysautonomia and my symptoms I most likely have it, and the reactions have become more frequent. The past five days alone I’ve had a reaction to a new t-shirt, makeup that I’ve worn for over a year now, marijuana smoke (thanks a lot to the assholes smoking in our hotel), and one every single time I’ve taken a shower. Needless to say, Benadryl is my best friend.
I also saw a nutritionist, but she wasn’t very helpful so there’s not much to say about that. I still have a consult with a different cardiologist this week, as well as an appointment with the fibromyalgia clinic to see if I have fibro. I really want to go home, but I’m grateful to be here and I know I need to be here. This post was kind of long, so thanks for sticking around for the end. I hope you all are doing well!