Diagnosis: POTS

Like most POTSies, my story from health to illness to diagnosis is long and convoluted. My ongoing story of diagnosis to wellness is sure to be even longer, basically lasting the rest of my life. Here's the "Reader's Digest" version of how I became ill and figured out what was wrong, part one.

 In January of 2011 I was coming up on my 30th birthday. Our youngest child was about 10 months old, our eldest was 4 years. Life was busy and happy, and sleep was a precious commodity that I was finally starting to get access to again. The Peanut had moved to her own room, and my darling husband was very good about night-time care.
One night, Peanut started crying and hubby tried to soothe her but only a nursing session would do. I made my way to her room, but on the way I felt woozy and weak. After I had nursed her, Hubby put her back in the crib and I tried to stand up. I collapsed and started shivering all over. Hubby called 911 and I had my first ambulance ride. At the ER I was given the full blood screen and a CT scan. The symptoms seemed to have passed, made better just by a bag of IV fluids, and nothing unusual turned up on the tests. I was sent home and told to follow up with my primary doctor. A few days later, in the office of the primary doctor, I collapsed again. This time I was admitted to the local hospital for overnight monitoring and a neurological exam. I was sent home with a clean bill of health, and my collapsing was called a migraine.
I settled into a strange routine where once a month, right around the time of my menstrual period, I would have a day of severe fatigue and muscle weakness. I would lay in bed all day, unable to get up, sleeping from early afternoon until the following morning. For that one day, I was miserable. The rest of the time, I was fine. I was active and healthy and very busy.
Because of the timing of my "bad days" we figured it was a hormonal problem, so we tried to control it with hormones. We started with over the counter progesterone cream, but it didn't help and caused an ovarian cyst that ruptured. The gyno put me an estrogen replacement gel, but that didn't help either. We tried the pill and the Nuvo ring. Nothing seemed to help, and all my hormone tests were totally normal. After about a year of chasing down various hormonal options with no success, the gyno finally referred me to an internist.
About this time I began having horrible abdominal pain, the stuff I mentioned in my post about my Celiac diagnosis. I was hospitalized for 7 days trying to find the cause, but someone dropped the ball and I was released with no answers. Another month later, a general surgeon finally diagnosed biliary dyskinesea and removed my gall bladder. I spent another 7-10 days in bed after the surgery, resting and healing.
When I tried to return to my life, the fatigue came back in full force. I felt lightheaded all the time, graying out whenever I tried to stand. I was exhausted, unable to get out of bed most days. I would lay in bed and sleep for hours in the afternoon, wake up feeling like a train had hit me, then sleep another 10 hours at night. It was a struggle to be upright. One day I decided to exercise in order to get some strength back and a 25 minute bike ride landed me back in bed for 3 days.
Within a few weeks of my surgery, my life was gone. I didn't have the energy to be a mother to my kids. I couldn't drive because the dizziness and disorientation would hit and I would have to pull over. I would be woken at night by the sudden sense that my heart was pounding and I was gasping for air. Only putting my feet up on pillows helped. My blood pressure often plummeted without warning, sometimes as low as 77/44. It hovered at a miserable 90/60 almost all the time, even after I was placed on Fludrocortisone and then Midodrine to raise it. I developed an insatiable thirst, my appetite failed, and I began to lose weight.
A couple of months after the surgery, I was hospitalized again for 3 days. The local hospital ran some tests and then threw their hands up. They couldn't figure out what was going on. I was released with the vague assurance from a neurologist that "it probably won't kill you."
But at that point it seemed moot whether I lived or died. From where I was sitting, if nothing changed then what kind of life would I even have? And if no-one could tell me what was wrong, then how could I ever get better?