Sensitive content
I've been seeing a lot of posts about people struggling with POTS since they got Covid. I've had this post-viral dysautonomia for 12 years now, and I know how it can ruin your life, and I just wanted to share some advice that has worked for me, in the hopes it might get someone a few more hours on their feet, cuz I feel so bad for y'all. But also because this knowledge was hard-won, costing tens of thousands of dollars, a broken collarbone, and at least three concussions.
(Obviously, you should talk to your doctor about treatments, I'm just some guy on the Internet.)
I saw a POTS specialist at the University of Michigan, and some great advice he gave me was that compression socks don't work. He said that by the time blood pools in the legs, you've already fainted, so use abdominal compression instead. I went out and got one of those things women wear to like, suck everything in, and was able to stand upright for a full 8 hours for the first time in a year. Plus side, my waistline looks fabulous!
My disability lawyer told me that if you want to get on disability for POTS (USA), you have to tell them you lose consciousness more than once a week, any less than that and you don't qualify. Seriously, you could go to the hospital every single week for an entire year and you're ‘not disabled enough,’ because that's the arbitrary limit they set in their rules.
My cardiologist tried an experimental treatment by adding a beta blocker with my Florinef. Now, you might be thinking, what? Isn't a beta blocker for high blood pressure? Well, he explained that what it does is lessen the strength of the heartbeat, which might help it not trip the sensitive trigger that makes an episode happen. I will reiterate this was experimental, and while it worked great for me, there still isn't a lot of literature on it.
I was finally well enough again to sort-of function, and then added strength exercises to my routine. Building muscle, particularly in the abdomen and thighs, is the best way to regulate blood pressure, hands down. Focus on light recumbant exercises at first. I did pilates videos geared toward the elderly, lol. I put on 10 pounds and I'm now considered ‘in remission’ because I haven't fainted in 2 years. Now, that doesn't mean I'm cured, I still get a little dizzy and a little tachy, and I cannot miss taking my meds, but I don't actually lose consciousness anymore.
(I am not a doctor, but I do have a nursing degree, ask whatever you'd like and I'll try to answer)