Posted 12/27/2022 5:27 PM (GMT 0)
There are lots of things you can do for POTS. It definitely can get better! I dealt with it for years, and was unable to stand for months because it was so severe. Definitely one of my more disabling symptoms. But it's better now.
Having a watch that monitors your heart rate or a pulse oximeter handy is helpful, for sure, and can help keep you safe in situations where you're standing for a long time (so that if your heart rate gets too high you will know to sit down rather than pass out!). A blood pressure cuff also can be helpful for monitoring progress and patterns. Severe barometric pressure swings make my blood pressure fall, and made POTS flare, so looking at the forecast could help me plan as well.
Another consideration is hydration. It's crucially important to stay hydrated, but also important to avoid over-hydration. People with POTS need to maintain consistent blood volume, which requires consistent hydration. Taking in water without the proper balance of salt and other minerals is actually counter-productive and will make POTS worse because your body won't hold onto water if it doesn't have enough salt. The first thing my POTS specialist did was ask what color my pee is and if I pee often! She told me to cut back on water and drastically increase my salt intake. This helped tremendously. Two teaspoons per day of high-mineral salt (like Himalayan salt) and only the proper amount of hydration: the number of ounces you need is your body weight in pounds divided by two (so for me 120 lbs./2 = 60 ounces of water per day) and more if you sweat.
Recumbent exercise, restorative yoga, lymphatic massage, craniosacral therapy, and rebounding (like with a porch swing or trampoline) are all good ways to keep your circulation and muscles healthy even when POTS keeps you from doing upright exercise and other healthy movement. You can find some exercises online that are supposed to be helpful when you're standing to keep blood from pooling in the legs.
If you decide to see a POTS specialist, know that they are very few and far between. Most of the specialists in dysautonomia are neurologists because it's a fundamentally neurological problem, but occasionally one will be a cardiologist. That said, most neurologists and cardiologists don't know anything about POTS that isn't on the Wikipedia page. (In fact, I had the chief of cardiology at a major Boston hospital read to me about POTS from the Wikipedia page, concluding that I was "perfectly healthy," despite having been admitted because I couldn't stand, and told not to worry because "POTS gets better on its own, see? [Points to Wikipedia on his phone.]")
Medications can really help some people, but they can have side effects and have about the same efficacy as a placebo - which means they are helpful! Just not universally. Maybe worth a try, though. People also use herbs such as licorice for POTS, but because that raises blood pressure, it can create other issues if your blood pressure is already low (as it often is with POTS).
I also found limbic system retraining extremely helpful for POTS. When I began the DNRS program, I could not stand for more than 30 seconds at a time. Within a month, I was packing up my house to move and doing repairs ten hours per day. During that time I also began treating mast cell activation syndrome, which also probably had an impact on my nervous system dysfunction. That treatment for me included curcumin, quercetin, DNRS, and a low-histamine diet.
It's comforting that POTS does not damage the heart, but it can be unnerving when it's mild, and dangerous and debilitating (because of fainting) when it's severe. I hope you find something that works for you soon! POTS can be so exhausting!