Your heart is pounding. You can feel it with your hand. You can hear it in your head. Your whole world is going black. Then nothing. You have fainted all because you stood up. Life with P.O.T.S. is no easy task. Postural Orthostatic Tachycardia Syndrome is an autonomic nervous system disorder that can pop up anywhere and at anytime. A car wreck could cause it, an infection could cause it, being pregnant could cause it, growing could cause it (teenagers), or (as is the case with me) you can have no known cause of why this happened to you. It can pop out of nowhere. Or it could start over a period of time and take decades for doctors to figure out that you have P.O.T.S. and still not even know what to do to help you (it took me moving to another state and finding a cardiologist experienced with this to get my medications settled).
Many people won’t believe you, I’ve even talked with someone before whose own spouse didn’t believe she had anything wrong. People will stop liking you, won’t believe you, think you’re faking it. I had someone I once worked for tell me that he thought I was psychosomatic (I wanted to be sick like that so badly that my body made it happen), yes, because I had so much knowledge of this before it happened and I want to feel like crap all the time. Not. Your own family could have problems believing you or accepting the fact that this may be around for your whole life and that there is no cure. Stuff happens. Several people can have a hard time believing in something that is somewhat rare and not well-known, at least in the U.S.A.
Some people with P.O.T.S. have low blood pressure, some have high blood pressure. You will most likely have a high heart rate (like 150bpm while just sitting down). You can have aches and pains with P.O.T.S. The common factor with people with P.O.T.S. is fainting or near fainting. You can have good days or bad days. You get tired more easily, and it is very hard to find friends that understand this. You can have difficulty even being in a car. Thankfully, I have an awesome husband and a few awesome friends that understand this and have helped me through it, especially my friend, Caitlin. She has picked me off the floor and taken me to the hospital more times than I can count (I have a slight tendency to hit my head on stuff when I pass out).
Thankfully, many people can manage their symptoms with the correct combinations of medicine, increasing salt intake, and drinking a lot of water. It may take a while to find how much you need to take of certain things and it could change over time. Even when you find a good medicine combination for you, it is still a daily battle. You have to plan ahead before you can go anywhere. Sadly, some are not so lucky. Some people, in combination with other health complications, pass away. Many of them very young women (P.O.T.S. seems to hit women more than men).
It isn’t easy to live with P.O.T.S., but you learn to live with it. You learn to accept it. What other choice do you have?
To better understand the energy level of someone with P.O.T.S. go here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . For more information on P.O.T.S. http://www.dinet.org/pots_an_overview.htm ; http://www.youtube.com/watch?v=ltiiBysokUE