My story began almost 10 years ago after I had already been diagnosed with two heart related conditions, Mitral Valve Prolapse and an enlarged heart. Basically, my heart valve did not function properly, causing blood to lead back into the atrium, and my heart was just too big. All of that was scary enough, but then you throw POTS into the mix and you get a very confused, frightened, and anxious teenager in the end.
The first time I heard about POTS was after my mom rushed me to the hospital one night for severe chest pain, a fast heartbeat, and I could visibly see my heart beating through my chest. I remember there was just a few yards between the parking garage and the entrance of the ER. By the time we made it to the front desk, all I could hear was my heart beating faster than I could ever have imagined. If you ever want to skip the three hour wait in the ER, just say you’re having a cardiac episode. They could not have wheeled me back on the stretcher fast enough as I hysterically cried about how fast my heart was beating.
The initial team of ER doctors agreed amongst themselves that I had POTS. They repeatedly asked if I ever fainted or got dizzy, and every answer was no. I had never fainted, and I didn’t know what this strange word they kept throwing at me was. They decided my symptoms were bad enough to admit me into the hospital that night, where I would stay in the heart wing of the children’s hospital for several days.
Over those few days, I was stuck with a dozen needles as vial after vial of blood was taken. My heart kept soaring up into the 200s and back down to the 180s like a rollercoaster. Despite the lead cardiologist’s reassurance that the human heart can go up to 270 before causing cardiac arrest, that statement only made me more anxious. I was only 70 beats from possibly having a serious cardiac event. (As I said before, POTS is fortunately not fatal)
Through my blood work, they found that my potassium and sodium levels were extremely low. They pumped me with fluids around the clock to help fix that. AfterI was released from the hospital, I spent the next week and a half in bed consuming salty potato chips and gatorade as much as possible to continue my recovery. The main treatment for POTS is to replenish salt and electrolytes in the body. However, it still took 2 weeks for me to gather up the strength to make it out of bed. I continued life as normal, but always with the fear that another POTS episode could happen again.
Even though that experience was especially scary and traumatizing, I was never told exactly what POTS was and how it affects your life from then on. This was in part due to the lack of awareness and education of POTS in the medical community at the time. Not every doctor believed POTS was a real condition, and they didn’t understand all of the side effects or damage it can leave a patient with. Therefore, they could not effectively teach their patients what to expect with this condition. Unfortunately, over the next 10 years I would slowly discover the physical and mental scars it left behind
For instance, I’d always known I had a slight intolerance to heat, but I quickly discovered I couldn’t take hot showers or baths anymore. That was the first sign that something was very different about me. Many POTS patients are told to avoid overly hot temperatures because it can trigger symptoms. For me, it causes terrible migraines and usually pre-syncope (the feeling you are about to faint) or full syncope (fainting). I finally started having random fainting spells in college, and it became clear that the POTS had never completely left my body. Many of my happiest memories also contain recollections of being violently ill whenever I spent time in the scorching hot Georgia sun. Over the years it got progressively worse, but I just wrote it off as heat sickness. This made spending time with friends and family increasingly difficult.
2022
Let’s fast forward to a year ago. March 9th 2022 to be exact. I’d been trudging through the year dealing with my chronic pain, fixing my thyroid issues, and personal issues when I suddenly became very ill. It wasn’t just any old cold or flu type of deal. This was a sickness I’d never experienced before. That Mother’s Day weekend I tried to pretend like my head wasn’t throbbing uncontrollably, or that I felt like I was gonna pass out every time I moved. I ignored the chills and muscle aches. Eventually, all of these symptoms got worse and then my arms became excruciatingly painful and numb. In hindsight, I should’ve gone to the hospital, despite my aversion to hospitals.
Within a week my symptoms went away and I wrote it off as a mysterious flu. Multiple covid tests ruled out that virus. My doctor said it could have been mono or any other virus that has long roamed the earth. I was weak afterwards, but I thought I was on the mend.
A month later I actually did end up in the hospital. (Funny story, I wrote about this experience almost in real time when it happened last year. I even made a post about it.) I had been experiencing the worst kind of fatigue for a week. My dad made me go to the hospital where I was almost wrongly diagnosed with Multiple Sclerosis. It took one visit to my primary doctor to discover my symptoms were just due to my POTS. It was a surprise to me because I’d forgotten I’d had POTS after so many years of no mention of it. Things started to make sense asI remembered the ER doctor saying my heart rate was surprisingly fast when I came in.
However, my primary doctor said things could go back to normal over time. She did give me the option to see a cardiologist, but I put it off. That focus didn’t last long as my symptoms returned with a vengeance. I began to have extremely painful and long lasting migraines, muscle spasms, foot pain, heart palpitations, even worse fatigue, and much more. I ended up calling my doctor to be referred to a cardiologist one day because I felt like I couldn’t even make it to work
After more than a couple of cardiologists, I finally found one who had the best understanding of POTS and how to treat me. A combination of beta blockers and drinking half a gallon of electrolytes a day was prescribed. This doctor even told me that my tilt table test - ordered by a previous cardiologist - to prove my dysautonomia was unnecessary because tilt table tests are not an accurate way of testing for POTS.
Life After Diagnosis
Now that I have an official POTS diagnosis, I wish I could say that I have lived happily ever after. Unfortunately, receiving a treatment plan doesn’t mean I’m magically healed or feel like a normal person again. It does help me to function enough to work (most days) and do basic routines. If I skip my beta blockers or electrolytes for even one day, my symptoms come back full force. That is the frustrating part of having POTS. There will most definitely be good days AND bad days. You have to experiment and figure out how to fit your life around it. It is hard and life feels hopeless at times, but I keep my goals in mind.
I also remind myself that there are other people battling this illness too. It is an unfortunate reminder that grows everyday as the number of people getting POTS from COVID rises.
Now that there is more awareness due to people sharing their experiences with POTS, it means you can easily discover how others cope with it. I’ve learned so much on the internet by following other “potsies.” Now I can share with others how I cope with my symptoms.
I started this post with that phrase describing how I’ll never be the same person again. It is true, you may never be the person you were before an illness, but as long as you continue to become better than yesterday then you will make it.
If you or someone you know has POTS please share to continue awareness for the condition. Knowledge is power, and without it you can not regain control over your obstacles.
