I’m new. Just came across this. I have had dysautonomia for at least 20 years, undiagnosed. I live in the metro Phoenix area. Doctors don’t know how to deal with and/ or don’t care. In 2006 and beyond I had hypercalcemia for years. No doctor cared to find out why. Then stated having super bouts of high blood pressure and very high heart rate. My bp at the er was 183 over 117, hr 130. They told me to go home and make an appt with pcp. Calcium was 11.4 when high end was 10.2 I had horrible back pain, insomnia every night, panic attacks, and severe headaches. My pcp wanted me to see phychiatrist to find out why I thought I was sick when nothing was wrong with me. Then I developed fatigue that was so severe I could no longer walk our dog or do housework. Saw a endocrinologist for 2 years and she finally said, sorry can’thelp. Took 6 yrs to feel like normal, well almost. Severe lumbar problems, injections, ablations. Now 20 years later, actually it was 18yrs since I’ve been sick again. I am the one who diagnosed myself, when bp started plummeting, like down to 60 over 40! My cardiologist sent in prescription for midodrine and see you in 6 mths. Yeah! Midodrine at only 2.5 mg and not strong enough to stop bp from falling. New cardiologist only cares about my heart. There is a Mayo clinic here, actually 2. Their only specialist left a few years ago and the never got another. I read a lot about dys. And am pretty much on my own. I am getting help from my new pcp that I got this fall and my husband and family. Sorry this post is like a downer, but I’ve gone to so called specialists that say they treat dysautonomia, but they really don’t know what they are doing. I’m long time retired and Medicare is awesome at paying for testing . One can survive this, but just that - survive. I was diagnosed with Lupus 1-1976. I have survived that and will survive this!