Posted 2/21/2021 7:46 AM (GMT -7)
I'm sorry that your providers have been disappointing. POTS can be tricky, since it's always part of a larger picture, and there are so few real dysautonomia specialists who really seem to know what they're doing. I'll share what helped me, in case it helps you.
POTS symptoms were disabling for me for many months, off and on, for years. It would flare the worst when I was under stress, "overdoing it," pre-menstrual, dehydrated, and when barometric pressure dropped. It also just flared alongside my general illness symptoms, too, so whenever I felt bad, POTS was part of the mix. I used wheelchairs to get around when I had to go to an unavoidable appointment. There's no way I could have worked unless my job had been something I could do while reclining in bed!
I finally saw a real dysautonomia specialist who explained to me how the body maintains blood volume and which pitfalls POTS patients and non-specialist doctors make. A point she stressed was that POTS patients need a large amount of salt (1.5 teaspoons per day for my body size) and proper hydration (your weight in pounds divided by two, in ounces, so for me 110 lbs./2 = 55 oz. of liquid). People with POTS hear that they need to be well-hydrated, so they almost always drink more than this and are over-hydrated, which depletes electrolytes and reduces blood volume, making POTS worse. She also recommended compression - socks, tights, whatever you tolerate - if you have any evidence of blood pooling in your legs, or if you spend most of the day sedentary. She emphasized that the studies about graduated exercise are outdated, so don't believe the residual stuff online about pushing yourself to exercise; that said, moving your body is important for circulation. Try restorative yoga (floor poses), gentle recumbent stretches or exercises, massage, or rebounding (like with a porch swing) to keep blood and lymph moving. She said that some patients benefit from meds, but they work abut as well as placebos - which is to say they do work! Just not reliably.
My LLMD found some standing POTS exercises that are supposed to help shunt blood back up to your head while you are standing, so would be helpful if you're worried about passing out while waiting in a line, for example. I didn't try them, honestly, but I thought I'd mention that they exist, and he found them on one of the major dysautonomia websites.
The other piece of this is that POTS is a neurological condition fundamentally, which is why most dysautonomia specialists are neurologists. The head of cardiology at a major Boston hospital literally read to me from Wikipedia on his phone, telling me that POTS was harmless and I should exercise and eat salt, when my heart rate skyrocketed to 155 any time I sat upright. Thanks, doc. But I have found a really good dysautonomia-literate cardiology practice, too, so it's definitely possible for cardiologists to be helpful! But I digress....
As long as you have neurological inflammation from stress, damage, or active infection, then dysautonomia will continue. I found that mine drastically reduced when I did the following things for neurological health: DNRS limbic system retraining, and addressing MCAS with a strict diet (especially no ferments) and supplements (quercetin+curcumin). Yoga, tapping, and craniosacral therapy also get honorable mentions. I still have mild flares of POTS when I am very dehydrated or heavily menstruating, but it's barely noticeable - nothing like what it once was, and doesn't limit my activities aside from maybe not doing summer yard work or climbing ladders on those days! DNRS and treating MCAS happened two years ago, and POTS has not been an issue in that time. The improvement happened fast.
That's just me, of course. Others may need more antimicrobial treatment, including for chronic viruses, or extensive meditation and lifestyle modification for stress, or a diet overhaul. Maybe you already knew a lot of this, but I thought I'd share in case anything jumps out at you as potentially helpful. Wishing you all the best as you work through these complications!