October 25, 2021
POTS stands for Postural Orthostatic Tachycardia Syndrome, which essentially means having a high heart rate when standing. The exact cause of POTS isn’t known for sure, but my POTS comes from my hypermobility type Ehlers-Danlos Syndrome (EDS). Many of my symptoms come from a combination of two of my three main conditions (EDS, POTS, and Raynaud’s Syndrome), so it can sometimes be hard to tell what the actual cause is. The major symptoms of POTS are fainting and having a high heart rate, mainly with standing and walking. For me, I don’t faint from my POTS except for when I have a high fever. When I got my second dose of the COVID vaccine my only direct side effect was a fever of around 102 (keeping in mind that my normal body temperature is around 96 or 97), but my POTS made it a lot worse for me. While I had the fever, I was only able to lie down because of the dizziness, and I fainted after sitting up for around 6 or 7 minutes. During that same time, my resting heart rate was around 110, with my standing heart rate being 170. I have a watch that tracks my heart rate and I noticed when I was sick that when I would stand, my heart rate would shoot up, drop down to around 60 one second, then rise to 170 or so in the next second.
Before my diagnosis, I would frequently get dizzy or get head rushes if I stood up even a little bit too fast, but my symptoms are relatively mild and can be kept under control by drinking a lot of water. This year, I have also noticed that the heat makes me dizzier than normal, especially when standing up. One symptom of POTS is instability, or feeling like you’re going to fall, which is definitely something I experience. In terms of my heart, I have a resting heart rate of 85-100, with my standing heart rate being around 130 but more if I’m walking up stairs or hot. I also get heart palpitations with more exercise than I’m used to, meaning that I can feel my heart beating really strongly in my face or throat.
I always have cold hands and feet, which is a POTS symptom because of the circulation issues caused by it, but is also made more extreme because of my Raynaud’s Syndrome. People with POTS can have trouble regulating their temperature, so I’m almost always too cold or way too hot, especially in my hands and feet. When I’m both too hot and standing, I notice that my knees become stiff and painful to bend, most likely because of some circulation issue caused by POTS. Another of my POTS symptoms is brain fog, so I sometimes have difficulty concentrating and often start a sentence then forget what I’m going to say.
While this may seem like a lot of symptoms when put all together like this, I am very fortunate that my POTS symptoms are relatively mild and easily controlled so that they are no more than an annoyance most days.