POTS: An Ordinary Disease That Turned My Life Upside-Down

Photo by Keira Burton

By Mary-Faith Martinez

I was 14 when I went to the doctor for a routine appointment and came away with a life-changing diagnosis: postural orthostatic tachycardia syndrome (POTS). I had no idea at the time what this was or how it would affect every little thing I did. 

My POTS diagnosis

The National Health Service says that POTS “is when your heart rate increases very quickly after getting up from sitting or lying down.” This is caused by poor circulation. 

My doctor noticed that my pulse tended to run high, so he had me sit on the exam table, check my pulse and blood pressure, and then did the same after I stood up. My heart rate increased by more than 30 beats per minute– a hallmark of POTS.

POTS affects the autonomic nervous system, which controls the body’s automatic functions that we don't consciously think about.

It felt like my body was not in control anymore. Things I had always taken for granted, like my heart beating, blood pumping, and lungs breathing, weren’t working normally. It was terrifying and a lot to take in at a young age.

POTS treatments

It’s been about ten years since my initial diagnosis, and I’ve had to make many lifestyle changes. POTS affects my circulation and blood volume, so I must ensure I fill up on fluids and drink A LOT of water. I also need to consume plenty of salt. Usually, doctors warn against diets high in salt, but with POTS, they encourage it.

Multiple medications can treat POTS. The most common is a beta-blocker rate. I’ve tried many types of beta-blockers over the years, and while some helped a little, some have done nothing, and others have made it worse; with trial and error, we finally found the right beta blocker for me. I take it daily with another medication for low blood pressure, another symptom of POTS.

I have a tricky case of POTS. When I was 15, my doctor decided I needed weekly infusions of normal saline to increase my blood volume. Not long after I started, he increased the infusions from weekly to twice weekly. Now, the infusions are a regular part of my life.

Standing appointments with two wonderful nurses are a regular part of my schedule. 

My veins were never easy for a nurse or phlebotomist to stick to, but a few years of infusions made my veins even worse. Finally, when I was 19, I had surgery to place a port. A port is a central line that can be accessed often. 

The port has made my treatment SO much more manageable. I’m not getting stuck with needles repeatedly, and although it was a huge decision to have it placed, I’d do it again in a heartbeat.

Living with POTS

For several years now, my treatment hasn’t changed. I still get saline infusions twice a week with my trusty port. I still take a beta blocker and blood pressure medication daily. I still incorporate all of those lifestyle changes into my daily routine, like increasing my salt and water intake.

Although my treatment is the same, my POTS isn’t necessarily under control. There are times when I can enjoy a few months of decreased symptoms, but more often than not, I will have some level of a flare of symptoms. 

My treatment is focused more on maintaining my symptoms and quality of life. It’s not about improving everything but preventing things from worsening. It’s not ideal, but it’s better than how I felt when I wasn’t on regular treatment. 

How POTS has affected me

POTS has affected my life more than I could have imagined. It’s difficult to explain how it feels to be able to do something your whole life and then begin struggling with it. I took things like standing and walking for granted. Now these seemingly small things can be a challenge.

When I graduated from high school, I had plans to attend a prestigious four-year university. I was frustrated to realize that I couldn’t walk around the campus or be clear-headed enough for classes. Instead, I took online classes through my local technical college and finished my degree at another local school that offered online classes.

Now that I’ve graduated, this would traditionally be when I would prepare to join the workforce. Instead, I’m struggling to figure out what I can do to support myself financially. I can’t hold a traditional job; even a remote full-time job would be too difficult. I am forced to explore other, more unconventional options.

Because walking can be challenging, I have also begun using a wheelchair when needed. This is something I never thought I would do. But, many POTS patients use different mobility aids. When I know I can’t handle the amount of walking a particular activity requires, I use my wheelchair.

POTS isn’t a rare disease, but it isn’t discussed enough. There is so much confusion surrounding it because people don’t understand it. That’s one of the biggest reasons why a diagnosis is so scary. POTS is completely life-altering and forces you to do things differently. But if there’s one thing I’ve learned, it’s not the end of the world. POTS patients can still live happy, fulfilling lives - something I strive for every day.

Mary-Faith Martinez is a freelance writer and editor for hire. She uses her personal experience to provide blog, article, and copy writing in the medical space. When she's not writing, you can find her browsing at the library, doing yoga, or spending time with her family.