Living with P.O.T.S.

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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

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2 responses »

  1. Stumbled across this blog as someone who is newly diagnosed. I have been so scared and get nervous being at home alone with my babies. I read this post though and was concerned you mention people pass away from this? My doctor said it’s not life threatening, just life altering. Should I be worried?

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    • Jennifer,

      I apologize for getting back to you so late and I am so sorry for concerning you. I don’t really write on the blog anymore. POTS is just life-altering for the vast majority of people. However, a few (and I mean very, very few) have complications that are serious enough to where they pass away. POTS itself is not fatal, but many people who had POTS that passed also had other serious issues that were made worse by POTS.

      If you are nervous about passing out at home with your children, then I recommend having some sort of plan set up. When my husband is away, I have a friend I message a couple of times a day to check-in that I am still okay (it has been a couple of years since a full-on fainting episode for me). My son knows how to call 9-1-1 if need be, but he’s never had to do that (thankfully). Strategically placing salty foods and water/gatorade/powerade throughout your home can also be beneficial. Really pay attention to your signals that warn you before a pass out episode. (I get really spacey, weak, queasy, and my breathing is a bit labored.) I have had to lay down in grocery isles in the past when mine used to act up a lot worse. I also recommend having either an ICE app on your phone or some type of card listed with all of your medical information on it. As always, check with your doctor to figure out what is best for you.

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