Okay, so before I even had my Behcet's diagnosis, my doctors were concerned about my autonomic nervous system. I had periods where my blood pressure would get terrifyingly high, as high as 210/115, and I was also diagnosed with sinus tachycardia. The symptoms have only gotten worse and nobody seems to know why. I began having issues with hyperactive reflexes, muscle weakness in high temperatures, and exercise intolerance.
I began to suspect POTS, but didn't have the low blood pressure that's typical with POTS. I was on low dose blood pressure medication to help me sleep, but was removed about six months ago over fears my blood pressure may be dropping. There has been NO change since discontinuing the medication. Some days it's up, some days it's closer to normal, but it is never low.
During my last hospital stay they noted a very scary situation. At night my heart rate was dropping as low as 39. If I work up and sat up we could get it into the 60's. It wasn't always low though. It would be normal then drop. I wasn't up moving around because I couldn't walk at that time. When I was able to get up, I would push 150 to 160 beats per minute. The nurses and doctors were nervous and I ended up with a crash cart parked outside my room just in case.
For me, it's normal. Hot bath? Prepare to have to lay down for a bit after. Forget showering standing up, even with the grab bars installed. Lately it's become difficult to walk reliably though. I may be okay but I also may end up with a racing heart, and useless legs.
I know POTS is a common finding in patients with autoimmune illnesses, but hyper POTS is a lot less common. They've tested me for adrenal tumors. I did have elevated urine and blood catacholomines BUT no tumor. They were only mildly elevated, but it wasn't a shock to me since I can feel when I am producing too much of the flight or fight goodness.
Any insight? I don't want to be the patient that suggests things to her doctor, but he has mentioned autonomic neuropathy. I feel like hyper POTS makes the most sense aside from MS, which I don't have because I don't have lesions or elevations in my spinal fluid numbers.