I spent over two weeks in the hospital in January 2003 for diagnostic purposes. After a tilt table test, I was diagnosed with POTS- Postural Orthostatic Tachycardia Syndrome. It is a dysautonomia, or a failure of the autonomic nervous system. It presents itself mainly with cardiovascular symptoms, problems regulating blood pressure and heart rate. Sudden drops in blood pressure caused me to pass out. I barely had any balance, and walking around was extremely difficult. Standing up even momentarily made me feel like I'd been run over by a truck. So that's when I started using a wheelchair. No one actually likes being in a wheelchair (once they get used to it) but it allowed me to continue in school, although I had to quit any extra activities, including choir :( .
They did a full set of brain and spine MRI's, but the neurosurgeons at Children's Memorial didn't believe there was anything else wrong. There was still a kink in my brainstem, but that had been there before surgery. So there was apparently no other explanation for my symptoms. By this point in time, I was experiencing constant headaches, extreme nausea and fatigue, and plenty of other symptoms that kept appearing out of no where. The neurologists told me I should see a new psychologist, because I had health anxiety, and I was actually making up or imagining all of these symptoms. That was the hardest part - the doctors discredited everything I had to say, and were extremely disrespectful.
So, POTS seemed to be the answer. We found the world expert, Dr. Blair Grubb, and went to see him in Toledo, Ohio in April. He is an amazing guy, and he prescribed me lots of medicines, and told me to try to get more exercise.
I tried everything he said. The medicines, mainly ProAmitine, help with the lightheadedness, but sadly nothing else. So I am able to walk around unassisted a majority of the time, but standing up even for a moment still makes me feel completely awful. I'm looking for more answers right now.