What is POTS?/ My Story

Every time I try to start a journal or a diary I am always super enthusiastic and write feverishly for the first few weeks before inevitably failing. I skip a day, which turns into two days, three days, and, well, you get the point. I start a new diary every few months, with the intention of writing only for myself- my life, no pretense, so that one day I can go back and re-read it and laugh at all the stupid stuff I do and decide to shamelessly write down for posterity.

This time, I hope it’ll be different and I’ll continue writing. I want to be able to connect with other people who are going through the same things I have been experiencing with POTS. Maybe this is the way to do that. Maybe it’s not. I don’t know, but here goes nothing…….

I figure that in this first post, I should probably explain what POTS is, for anyone reading this that doesn’t have it. I’ll give you the short version because it would take forever to explain, since people can experience it in so many very different ways. (Here’s where I get technical.) POTS stands for “Postural Orthostatic Tachycardia Syndrome.” It’s a form of Dysautonomia a condition of the Autonomic Nervous System– in which patients usually experience Pre-Syncope (near-fainting) or Syncope (fainting) upon standing or sitting up from a reclined position. This happens because when they stand up, their pulse increases dramatically, a result of a malfunction of the Autonomic Nervous System that creates an imbalance that the body cannot recover from as fast as it needs to. There are medications available to help with the symptoms, but the most common form of treatment for mild POTS is salt tablets and drinking extra fluids in order to constrict blood vessels and increase blood volume and pressure.

Got all that?

Basically in my case, my blood pressure drops and my pulse spikes and I almost pass out a lot, or at least I feel like I’m going to. What’s funny (but not really funny at all) is that now, for me, it’s not postural- meaning I prettymuch feel like this all the time. Other problems can be associated with POTS, too. For example, I’ve also got Small-Fiber Neuropathy, meaning my feet cramp up every single night, and my vision is terrible- I can’t see anything, especially at night when lights are really super bright for me. It’s a super fun disorder. NOT. Despite all this, though, I’ve been told that I’m very high- functioning.

I was diagnosed with POTS three years ago, when I was 17, because I’d feel dizzy in dance class when I stood up from doing floor work. Sure, I’d get a bit dizzy and light-headed, but that was the extent of it. I’d feel totally normal if I just took some meds and drank more fluids. Things didn’t get bad until this past spring, at the end of my sophomore year of college.

Back in March, I started to have pre-syncopal episodes- I’d feel like I was going to faint for a few minutes and then it would pass. I didn’t think much of it. I knew it was my POTS acting up, so I just took more salt pills and drank more fluids and thought I’d be fine. Boy, was I wrong! After a few days of this, I told my mom about it, since it was getting worse, not better. She then contacted my cardiologist. Unfortunately, I was 300 miles away from home, so it was more difficult to get direction from her on what I should do. I’d talk to one of the nurses in her office, Lynn, every day, updating her on how I was feeling and what I had done/ eaten/ meds taken, etc. I still talk to her at least once a week.

Long story short, I got to a point in about April when I could hardly get out of bed unless I absolutely had to. The only time I’d feel okay is when I was lying down (I’m sure other Potsies can relate). I somehow managed to finish out my semester and take all my final exams before coming home for the summer, which was and is my proudest accomplishment of my college career thus far.

So far this summer, with a strict regimen of sleep, exercise, and 5 different medications, I’ve been able to intern in NYC as planned. It has been SO DIFFICULT, but I’m super stubborn and being bed-bound for much longer was NOT an option. I am still being challenged by my POTS 24/7, even after coming this far since March. Every day I feel faint. Every day I exercise before work and take a dozen pills. Every day I try to get 8.5 hours of sleep (though I’m trying to have a social life again… sorry Mom!). I’ve been through a lot of ups and downs from day to day, and because of that I can never really plan anything in advance. I’m going back to school in about 3 weeks, and I couldn’t be more excited. I wasn’t sure at the beginning of the summer if I’d be able to go back.

As of now, I’m still trying to “keep calm and carry on,” as the saying goes. Trying to get back to 100%. It’ll take a while, but I was there once, so I’m sure I can get there again.

If you can’t tell already, this blog is mostly shaping up to be a lot of my ranting. If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS from this post.

Feel free to message me- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

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