My name is Amanda; I am 18 years old and a freshman in College. I have had NCS and OI for about 4 ½ years now. The first time I noticed something wrong with me was when I was a freshman in high school. My mom, brother, and me went to the bank. I remember standing in a long line for a while, as we finally got done with our business and started heading out the door, I fainted and fell on a sign that was in front of me. At first I thought it was nothing and I never thought it would happen again.

     My sophomore year I had gone to a prom. I was so excited and I was with a handsome boy, I felt like a princess. After a while of dancing we had to stand in line so that they could pick who would be the king and queen. I started to feel like I was about to pass out and was having blurred vision. I ignored it for a while that night, but I never got over being dizzy. I went on and finally I couldn't stand it I had to go outside and put my feet up or something. That year I just every once in a while would get the dizzy spells.

     My junior year I had it all, I had a car, a job, and was feeling good in school. Well, after about two weeks into my job as a waitress at a Pizza place, I started noticing that I only got dizzy if I strained myself or was standing for a long period of time. I couldn't always sit down and take breaks at that job. So I had to quit. I also noticed that sometimes as I would drive, I would get a dizzy spell and have blurred vision. At school it was harder to deal with. Things started to progress. Every morning I would wake up dizzy not being able to see myself clearly sometimes when I put on my make-up. I would sit in the lunchroom with my friends and would occasionally have chest pains and hot flashes. Sometimes I would notice myself getting short of breath. All of my classes were far apart from each other, so that meant a lot of walking. Those times in between class I would feel dizzy and start to feel numb.

     I didn't know what was wrong with me, so instead of ignoring what I was feeling, I told my mom. After I told my mom she called my family doctor. I told the doc all my symptoms and he thought maybe it was a thyroid thing, so we did all the tests for that, and did a few other tests. Everything came back fine. Some people thought it might have been anemia or an eating disorder that made me feel this way, but they noticed that all that was fine. Because of my shortness of breath, chest pains, and because the doctor noticed that I had low blood pressure, I was then sent to a Cardiologist. I had a tilt table test and the results were positive. They told me I had Vasovagal Syncope. I was like "What's that?" They explained it to me and put me on some different medications but each one had negative effects. This particular doctor didn't know too much about dysautonomia and basically when the medications didn't work they didn't seem to want to help me anymore. They told me that it was all in "my head" and that I needed to go to a Psychologist. I left this doctor. I went to another doctor who then diagnosed me with Orthostatic Intolerance and Neurocardiogenic Syncope. They put me on Midodrine, which helped with my blood pressure but didn't do much for my dizziness, chest pains, blurred vision, and shortness of breath. I was then sent to a Neurologist, which didn't get us anywhere and was a waste of time and money. I then went back to the second Cardiologist who then told me it was "all in my head.' At that point I just gave up.

     I started to get really anxious because I was tired of sitting around with no support from the medical community. I got on the Internet one day and found the NDRF web page and read all about dysautonomia. I then got in contact with DYNA and they helped me out so wonderfully and they understood what I was going through. I have felt so much better about my situation since finding this group. They are my new best friends and they bring a tremendous amount of joy to my heart.

     I now know that I am not the only one dealing with this situation. I am taking positive steps forward in my treatment now. In August I am going to see Dr. Blair Grubb at the Medical College of Ohio and I have high hopes that he will be able to help me. I also have found a new local Cardiologist who is willing to learn about these conditions and is willing to increase his knowledge of dysautonomia. I can go on and on all day long about how DYNA has helped me! I wish to thank the people who made this group possible. We need all the support and research that we can get! Thank you!