Growing Deeper Roots: My Story of Invisible Illness

I have official met my 1 year mark. March 30, 2015 was my first syncope episode. I had fainted occasionally before this date, but this was the real onset of my chronic syncope and the beginning of the end of normalcy. I fainted again April 1st, and then again on April 5 (Easter). After fainting in front of my mother, we started the long, drawn out process of a searching for a diagnosis.  It's fair to say that we still haven't gotten one. We've gotten 100, and none of them come with a treatment plan or a cure or a solution.  Dysautonomia, chronic hypotension, POTS, pituitary macro-adenoma, prolactinoma, neurocardiogenic syncope...the list goes on. But it never reaches a point of progress towards health.  I'm still waiting to hear back from Vanderbilt. We were told that we would get a treatment plan within a week. Tomorrow it marks 3 weeks from our appointment and we are still waiting.  I still faint about 1-2 times a week. I still can't figure out how to sto...

When I got my POTS diagnosis in July, I applied to the Vanderbilt Dysautonomia Clinic to try to find some answers. Since Dysautonomia is a field of medicine that is underfunded, under-researched, and fairly new as a diagnosis, there are not a lot of specialists, research clinics, or POTS-literate physicians. The clinics and specialists that do exists are swamped with patients and the wait-list is months long. I applied in July and my appointment was March 10th. My incredibly supportive parents drove me out to Nashville last week for my appointment at Vanderbilt Dysautonomia Clinic with Dr. Robertson. We spent the night with my aunt and uncle in Franklin and then arrived at the clinic Thursday morning at 7:30. First I had a blood volume test. This consisted of using an IV line to take blood samples, administer a radioactive substance into my line, and then take more blood samples in 6 minute intervals. The purpose of this was to measure how the radioactive substance was diluted in ...