My Story

This blog has been a long time coming.  I am a 20 year old junior in college and I cannot remember a time when I did not feel like I was going to pass out in the shower or when I first got out of bed in the morning.  It was just a few months ago that I realized that not everyone blacked out every time they stood up or when they tilted their heads up.

It all started when I was a junior in high school.  I had heavy menstrual bleeding-- so strong that I couldn't keep consciousness and wound up in the hospital on and off for two months due to my fainting and period troubles.  After these issues were resolved, I thought all my problems were over, until I right before I went off to college.  I fainted in sports medicine class; when I went to the pediatrician, she told me that a lot of young girls faint and not to worry about it.  I was at a medical camp shadowing an orthopedic physician when I fainted next.  The doctor said that many people faint when they see medical procedures; I knew this couldn't be possible since I had been standing at a work station, not even close to a patient.  I went to a cardiologist who did various tests including and EKG and a 24 hour heart monitor holster.  The results came back relatively normal.  He told me to be thankful that I didn't pass out everyday and he instructed me to drink Gatorade every once in a while.

When I moved to college my appetite went away, I developed extreme stomach pain, and I lost 15 pounds.  I came home for summer and had ankle surgery for a dance injury and continued to lose weight, faint, and be overwhelmed by abdominal pains.  By my sophomore year, I would have days when I couldn't get out of bed for fear of fainting, and when I could get out of bed, I would spend my days nearly getting sick.  I tried to stay connected with my friends, but they couldn't understand why I needed to sleep all the time.  Even taking a shower or walking around my apartment took a massive toll on me.

I got down to a terrifying 95 pounds.  My parents were incredibly concerned and they never left my side.  They fought for me when I wasn't strong enough to fight for myself.  I went to 14 doctors: pediatricians, general practitioners, an eating disorder specialist (who told me that I was faking to get attention), gastroenterologists, and naturopathologist.  I was subjected to EKGs, an endoscopy, ultrasounds, a CKG, gallbladder removal, blood tests, gastric emptying tests, and a small intestine barium study.  Everything was normal.  Doctors chose to ignore my syncope symptoms and focused on my intestinal problems.  When they couldn't find anything, they gently implied that I was faking.

Finally, doctor #14, a neurologist, offered me the answers that I had been so desperately looking for.  After an EEG, a tilt table test, and an MRI, I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS, which is a form of dysautonomia.  Every day is a still a challenge, but I am so relieved to finally know what has been plaguing me for years.  I wanted to write this blog because POTS is so rarely diagnosed, and many doctors don't know about it.  We need to raise support for dysautonomia awareness.