I’ve written about how I first tested myself for POTS at the beginning of my Long Covid journey in January 2022, and how I suspected maybe I’d had POTS for a long time (many women do), without having horrible symptoms. My bout of Covid in Nov/Dec 2021 set it off, as viral infections can. I did a ton of research in January, and set in motion a series of daily actions to stave off some of the worst effects: compression stockings to keep the blood near my heart and brain and prevent blood pooling, up to 3L of water per day to increase blood volume, a ton of salt pills to increase water retention, eating small meals with low carbs and no sugar to prevent tachycardia after meals, and resting as much as possible. What I wasn’t prepared for was the weirdness of POTS; the strange little – and big – things that it does in the body that aren’t written about on WebMD or in medical journals. You have to be a POTS person to know about them.
For example, did you know that many people with POTS can’t thermoregulate? Its a thing. In January and into February, my body couldn’t recognize hot or cold, and would freeze during the day, despite several layers of warm clothes, and burn at night – despite sleeping almost naked in a frigid room (in the middle of a Canadian winter). I would lie in bed with my feet burning, my legs hot and cold and my arms and hands on fire- the whole time, unable to sweat. It worsened my already horrid insomnia (exacerbated by Long Covid), and made me fear my body and my bed. Then, somehow, I found that wearing socks to bed seemed to trigger my body into understanding that I was okay, and that burning feet were not necessary. But it took time and patience, and caused me anxiety around sleep. It was only by reading another women’s POTS, burning feet and Long Covid story that I came to understand that my body was not completely broken.
POTS can also cause your nose to freeze. That’s right: just…. freeze. Its something that still affects me, although it disappeared for a few weeks, only to return in the past few days when there were some bouts of intense fatigue. The rest of my body feels fine, sweating has returned, and then my nose will just become an icicle. I also developed at least two cases of Raynaud’s on my fingers, but it would seem this is more related to Long Covid than to POTS. Anyway, it’s a weird POTS thing to be aware of…
If you have digestive problems, POTS is not going to help – at all. Not only can it cause life-threatening diarrhea (not my case), but it can also cement your insides, literally stopping your intestinal walls from contracting (definitely my case). For at least two weeks, no amount of fiber, laxatives, water or prunes seemed to help, and it was… painful. And frightening. Luckily my doctor told me to take Restoralax daily, and my gastroenterologist recommended 3 days of Milk of Magnesium, followed by daily Restoralax. Sure, its not the most delightful concoction, however it’s been the only combination that helped my intestines remember their function. Even now, over a month after those awful weeks, my digestive system is still unhappy with being POTS-adjacent.
Certain movements will become very very difficult with POTS. Although my heart rate is improving, I’m managing the fatigue and dizziness and I’ve embarked on an exercise programme designed for POTS people, there are certain actions that my heart simply no longer likes. Climbing stairs is like climbing Mount Everest for me. Bending up and down – for example lifting boxes or moving light furniture – not something POTS is happy about, and immediately symptoms begin to swell in my body. Sex is a bit hit and miss – I can no longer be as acrobatic about it, and my body and heart do see it as a workout; I feel quite tired afterward. (For those of you wondering but never asking about sex and POTS, this and this are good reads to answer all your questions.) I’ve also found that my heart needs a good amount of warm up for anything – she can no longer sprint without going a bit haywire. Be aware what your body can and cant do after POTS so you don’t tax it more and suffer a crash or Long Covid relapse.
I have written about the myriad symptoms I had at the beginning of Long Covid, and one of the ones that really frightened me were the tremors. All of a sudden, in February, I developed an ‘internal vibration,’ where I could feel my body trembling for hours on end, although I wasn’t outright shaking (except for the horrible night at the Emergency). I also developed a sort of ‘jerkiness’ to my movements, where nothing I did was fluid, no movement I made was natural – everything felt jerky and sudden, abrupt, as if I had lost control over my rhythm. It was terrifying. Little did I know that this is something that can happen to people with POTS, and there is medication to temper it. Certainly betablockers have worked tremendously for me and, for now, those tremors are a memory.
Finally, and unfortunately, if you have POTS, you probably won’t be drinking a fantastic cocktail or California wine any time soon. Alcohol and POTS do not mix. Indeed, I haven’t had a drink since very early January, the last time I tried exactly one gin and tonic and felt hungover for almost three days afterward. Since alcohol is dehydrating and POTS people need to be super, ultra, mega-hydrated, it’s a bit counterproductive. It can also lead to hypotension – low blood pressure – so if you’re POTS dizzy, expect that to worsen. Often, I just feel like crap after even one drink, and then hungover for many days after. Best to avoid.
I’ve found its easiest to google things. That’s the way I found out about noses freezing and alcohol avoidance with POTS – and try to look through medical journals and read people’s blogs, they’ll go into far more details than any basic site. I’ve also found it very helpful to join online communities: Facebook Groups, and Body Politic have been enormously helpful in tempering my fears and showcasing the many strange and wild symptoms of Long Covid and POTS…. you’re not alone, you’re not the only one.