← Return to POTS, Pre- or Post-COVID: Where did you find treatment and what helps?

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Did anyone else’s POTs or CFS/ME meds stop working for them after Covid, or become far too weak to manage symptoms?

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I have POTS from having long COVID. I can't imagine having it prior to having long COVID. I wear an abdominal binder that does help some. I can sit or stand most of the time while wearing this without passing out. Unfortunately, I do still experience dizziness (sometimes minor and sometimes worse) even when wearing the abdominal binder. I am worried about falling and have neuropathy and CRPS in my right foot and leg. I have body aches. The last thing I need is to fall, so the abdominal binder does help mentally as well as physically.

I have not been offered medicine for POTS. I see a PT through the Long COVID program I am with. What medication were you taking?

As an aside, I find there are days that even though I take my medication, my body feels like I have taken nothing.

Good luck, this is a stressful journey, but hopefully one we can all find acceptance and peace with at some point.

Hi- I know this is an older post, but thought I’d try reaching out. I was diagnosed with POTS in 2018 and had many of the symptoms generally well managed, but I have other co-occurring conditions, so it’s hard to say.

I’ve been trying to find a POTS community on Connect and getting kind of frustrated because the posts seem to be all spread out in different categories/discussion boards and then thought to check the post-COVID section.

Despite all the precautions I tried to take, I had COVID in November 2023 (stupid Omicron variant) and all my symptoms got worse, even though the infection thankfully wasn’t serious: Fatigue, neuropathy, pain sensitivity, GI symptoms, dizziness.

I wasn’t taking medication, but I can say my typical treatment/management strategies haven’t been enough to keep the symptoms at bay. I don’t have CFS, but I have fatigue associated with central sensitivity syndrome/central pain syndrome.

My doctor thinks I either have long COVID, or COVID exacerbated my underlying conditions. Initially, all my specialists told me in most cases the initial increase in symptoms is “transient.” It did get better, but I never got back to my original baseline and I’m still trying to press forward.

If you’re willing to share, what medications were you taking, and how are you doing now? I hope things have gotten better.

If there’s anyone else out there, where have you sought treatment? The original neurologist who diagnosed me left the area, so I don’t have a specialist and haven’t been able to find a PT who treats POTS in my area.

Hello to all of you on this thread. I appreciate your stories and struggles. This is hard stuff.

I first had Covid in Nov. 2020, LC symptoms started in March 2021 immediately following my second dose of the Pfizer vaccine.
I have 26 (and counting) medical diagnosis due to my Long Covid. I was an active elementary teacher. I am now determined fully disabled by private insurance, my state and SSDI.

As all of you know, the truly devastating mental and physical toll of Long Covid is its own kind of intense.

I have hyperandrogenic POTS due to Long Covid.
My life saving med has been a beta blocker. It generally caps my heart rate at 120, which I can manage. I do have heart rate ‘breakthrough’ events where my HR goes very high but it’s not nearly as often as prior to taking the medication.
Other things I do to manage my POTS symptoms include getting a one liter saline infusion twice a week, wearing compression socks, taking in extra salt, practicing a strict pacing of daily activities, and doing simple exercises when I’m able. The exercises were prescribed by cardiac therapy. They include using therabands and body weight exercises to strengthen my legs and core so those muscle will help move blood more effectively.
(The ‘body weight’ exercises include several types of leg lifts, bridges, modified planks, wall slides. I don’t use any additional weights.)
But, PEM/CFS interfere with these exercises. I’m usually able to do a few exercises on my infusion days.

I hope this is a little helpful for you. Please feel free to ask me questions.

I’m wishing all of you safe, fulfilling days and restful, peaceful nights.