POTS, or Postural Orthostatic Tachycardia Syndrome, is an autonomic nervous system dysfunction, and in short, is a condition where my heart and head are not working together correctly.

A lot of people don't understand the condition - even most doctors. It is classified as a “rare” condition, but I disagree with this. If we are being completely honest, we believe that it is simply just misdiagnosed. For many years, I have had the run-around with doctors and therapists to find out what was wrong with me. But I have always known it was something more. For those that truly know me, or have ever seen me play sports, know that I am the furthest thing from a wimp. Three years ago, when I tore every single ligament in my dominant knee in soccer, they tried to carry me off the field and to the bus. However, I refused and was begging to go back in and play. So when I had doctors telling me that this was all “in my head,” I knew they were wrong.

First, I was told it was a Vitamin D deficiency. Then, a thyroid issue. After that, they diagnosed me with Rheumatoid Arthritis and was severely concerned about a brain tumor, MS, and either blood clots or tumors in my lungs. When I finally went to the appropriate doctor with my friend, she brought up her newly diagnosed condition to him and recommended I be tested. His response was, “I don't know much about this, but I'll order a test.” Paid professionals are blind to this, even though it causes so many problems for so many people.

Many fail to understand what my condition really is. Whenever I talk about POTS, I am either met with silence or told how I can make myself feel better by people who have no clue what it is. I am told things like, “you don't work out enough” or, "it's because you don't eat right.” Part of the diet for POTS is actually lots and lots of sodium. My doctor said to me, “just dump the salt shaker on whatever you eat.” Not only was I shocked about his bluntness, but confused. Never in my life had I heard of a doctor that had recommended so much salt. You always hear horror stories about people who've had too much salt dying of heart attacks. How was an impending heart attack supposed to help me go day-to-day?

Seeing as POTS can also be called an Autonomic Nervous System Dysfunction, it obviously means it affects my entire body. This is not just something where my heart and head are affected, but even things that have nothing to do with either.

Some of the things I experience are:

1. Passing out. This is one of the main signs for POTS, but mine is more than most others my age. My doctor has been trying for quite some time to get it under control, but I either faint or black out at least once most days. This is a scary thing to experience and never really gets easier. I'm at college all by myself and am very nervous about walking around alone. I push myself way harder than most people with this sickness, and I know that effects why I lose consciousness more than most, but finding a happy medium with this condition is harder than one might think.
2. Migraines. God, the migraines. I have had them almost my entire life and it is to the point where I feel like I have a stereotypical hangover.
3. Sensitivity. I work in an office 40 hours a week, and when I walk out, I have to be wearing sunglasses or I'll most likely be wanting to cry. I'm sensitive to both light and loud sounds; doctors think this may be a reason why I have issues with being a light sleeper. I'm always complaining about things being too bright.
4. Fatigue. I am tired all hours of the day. I've always been told it was just depression. This is aching of my all limbs and areas, having trouble catching my breath after one flight of stairs, and the kind of tired that no amount of sleep can fix.
5. Anxiety. The mood swings and anxiety have always been a big issue for me and something I struggle with almost every day. I feel myself shaking and paranoid all hours of the day. I'll freak out about the little things. Of course, I have been diagnosed with PTSD, but anxiety is still a huge symptom of POTS. I'm sure the PTSD makes it much worse. I have what is explained as “adrenaline rushes” almost all day. My fight-or-flight instincts are always kicking in with absolutely no threats around me.
6. Focus. This is also a big sign of POTS. I can almost never stay concentrated on much of anything. I have even struggled for a very long time with memory loss. I often forget conversations even after I've just had them. I have to work three times as hard as other students for the grades I had in both high school and college - I have to write down almost every word the teacher says. I knew as soon as I walked out of the classroom I would have no idea what they had gone over, especially in math. It even takes me longer to respond in conversation, as it takes me longer to process the information said or given to me.
7. Chills. I am almost always cold and I'm usually always sporting goosebumps. Even in the summer, I'm usually wearing a cardigan or a sweatshirt.
8. Heart rate and blood pressure. When I stand up, the issue is that my blood pressure drops and my heart tries really hard to pick up the blood that is not there. It begins to overexert itself which causes me to pass out. However, I often find myself laying in bed doing nothing and my heart rate is over 140. My resting heart rate is almost always over 110, but I can sometimes feel it drop to where it should be. I'm still trying to learn more about what my blood pressure should be and what's healthy.

Heat and heavy exercise severely influence my symptoms. If I'm out in the sun all day, I can expect I'll be miserable the next day and most likely struggle with staying conscious.

These are some of the main things I struggle with - they are not curable. It's not because of my diet or anything like that (I wish it was that easy to fix). This condition is (indeed) chronic, but there is a possibility that the symptoms will die down as I get older. My doctor is almost positive that I have had this sickness for most of my life, but because of the rareness of it, they were never able to diagnose.

There are some things that can obviously help with this. Right now, I'm on four different medications and take them four times a day like clockwork. I struggle with dehydration and drink usually at least three whole water bottles, along with at least one drink like Gatorade to replenish my electrolytes. This is supposed to help with my passing out, but so far, it hardly does anything for me. I've never been one to not stay busy (those who know me know this to be true). I played three sports in high school, as well as playing travel soccer year round; was in choir, plays, musicals; and had a job. I kept myself busy.

I am ecstatic that after about 10+ years of the doctor run-around, we finally have a clear diagnosis. But it's still not too good of news, as there is not much treatment I can do to ever really feel better.