If you are someone or know someone who has dysautonomia then you know what it is like every day. There are very few answers for anyone. The doctors understand it, but only to a certain extent. There are not many books to help you out, and there is almost nothing online. There are some youtube clips of true stories and some websites giving you symptoms, but there is nothing to help you through what you're experiencing.

The science makes it seem insignificant: that any disease can uproot your life doesn't even ring true until you're there experiencing it. So I'm going to give a brief version of my story. The ups the downs and everything in between. I am writing this because I believe that it would have helped me to read someone else's story to know that I am not alone.

I was diagnosed with postural orthostatic tachycardia syndrome (or POTS) the day before I left for college. 18 months before, in January of 07, I had been in my cul-de-sac and had suddenly gone very weak in the knees. Before I knew what was happening, I was on the ground, conscious, and fully aware of my surroundings. My boyfriend was there and he had knelt beside me, checking me for anything that may have hit the concrete. I opened my mouth to say that I was fine, I was just lightheaded. I probably had not had enough to eat that day, and my knees just gave out. But nothing came out of my mouth. I could think clearly, but when I tried to speak, nothing happened. I finally mumbled "fine." I was trying to tell him "I'm fine. Please help me up."

We called my mother, who was at work, and a few weeks later I was at the doctors hooked up to an EKG. Everything was normal. They sent me home with nothing and told me to just take it easy. I tried, but I fell again that night. And the next. I couldn't figure out how one minute I'd be fine, and the next I'd be on the ground looking up. At the time I was part of my high school's color guard, and every day at school I felt okay. I made it through rehearsal usually with no mishaps, and headed home. But it was every night when I got home and ate dinner that I would start feeling bad and fall.

We continued to see doctors who continued to diagnose and re-diagnose me. I felt like a pinball between three different hospitals, and by the end of nine months, I had seen over seventeen different doctors. Finally they began to tell me that it was my fault and that it was all in my head. I believed them for some time, but I continued to fall, even when I told myself I wasn't going to. It was increasingly hard to believe that it purely psychological.

I did start to notice some patterns by the tenth month: I usually fell after exercise, and I got very weak after drinking hot chocolate. When I had ice cream before bed I felt better. I always felt worse at night than in the morning, and if I felt bad in the morning, I knew the day was not going to go well. I found no connection with foods. I'd eat at different times, skip meals, eat more, change my diet but sometimes I fell, and others I didn't. It made no sense.

In April of '08, my team was going to World Competition in Ohio for winter guard. I was captain, and had responsibility to see them there without any drama. I was so excited. It was my senior year and I knew we could do as well as we'd practiced for.

The week before we left, I collapsed at school. They took me to the emergency room, and told me they were admitting me to the hospital for a few days. I told them, no, I wasn't. I was going to Worlds and if they wanted to stop me, they'd have to drug me. That's illegal without parental consent, and since my mom could not do anything (I was 18) we left. Worlds was a week-long trip and when we returned I had three days until my boyfriend's birthday and then two days until prom.

The day after prom I was admitted to the hospital. I could barely stand without help and my doctors all blamed me for putting my body through stress it obviously could not handle. I stayed there for three nights while they ran tests on me to make sure I was not epileptic. Then was released; feeling better but not cured. They had no diagnosis.

I do not know who the doctor was who recommended the tilt-table test. But within five minutes of being upright, I passed out - a good sign for me. That meant I had POTS. The doctors told me that one of the reasons it was hard to diagnose was because I hadn't fainted before the test - I just fell. They told me that some POTS patients don't faint, but fall like I do. My mom cried when she was told, and I almost did. I was so happy to know what I had - and that it wasn't terminal, we celebrated all night.

Now I'm in college. It's been six months since my diagnosis, and I'm taking salt tablets every day (to increase my blood volume) and Florinef every other night. I am still in a color guard here, but I may have to bow out at the end of the season. I have not felt better since practices started, and I've even felt worse. I have a check-up in March, but I'm terrified of the results.

I am getting a handle on what triggers my symptoms, though. Hot foods make me feel very bad (which is why hot chocolates make me feel awful). Cold foods give me energy. Sodas are fine until the well-known sugar crash, which for an average person is uncomfortable, but for me I usually end up feeling like the world is going to end. The mornings are easier than the nights, and nights can be especially hard after I've exerted myself physically. If I feel bad, I change into lighter clothing so I'm cooler, and usually this makes me feel a lot better. I drink a ton of water every day, and make sure I take in plenty of potassium.

I have a hold on myself now. I'm proud of where I've been and how far I've come. I am still looking for support from people who relate to me to ask them questions, because I still don't know everything. Some days I'm scared it will never go away, but others I feel very optimistic. I may have to make some changes - more than already - and cease guard before the next season starts. I may go back to figure skating, somewhere cold but active. I don't know. I just know to count my blessings every day.