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

Hello- I’m looking for others diagnosed with POTS, whether you had it before or after COVID. I’d like to know if you’re willing to share: Where are you going for treatment, and what’s helped? If you had POTS before COVID, did your symptoms change? Or if there’s anything else you’d like to share, that would be welcome.

This is my first discussion post to Connect, though I’ve commented and come for advice and encouragement as a caregiver for my father, who also has complex chronic conditions. I’ve searched for a POTS or EDS support group or thread, but the discussions seem spread across different areas, and then I decided to try here.

I’m 40 years old and was diagnosed with POTS at age 34, though I had symptoms for years. I was diagnosed by a neurologist because I was first diagnosed with small fiber neuropathy. With a lot of work, my symptoms improved until I had COVID in November 2023. Everything got worse and I never got back to my baseline symptoms. The neurologist who diagnosed me left the area, there’s only one POTS specialist here with a 2-year wait list, and I haven’t been able to find a PT with experience. It’s made more difficult because I have other chronic conditions that require accommodations in PT—it’s hard to find someone comfortable with POTS and the other conditions.

At this point, my conventional interventions for POTS (electrolytes, salt, gentle exercise, low dose naltrexone) are barely making a dent in my fatigue and post-exertion malaise. The stomach pain and bloating from GI symptoms are also worse.

I’m feeling really dejected right now because I started a workup in a related clinic at Mayo Jacksonville almost a year ago (they don’t coordinate the appointments for us, so it’s taken forever for me to get through red tape and organize my own appointments and testing), and although they gave a referral/order to their POTS specialist in Autonomic Neurology, his team declined to see me (!)

Actually, I had an appointment for this month, which someone cancelled without notifying me. When I called to inquire what happened, I couldn’t get a straight answer for weeks. Eventually, I was told the tilt table test results my care team provided “lacked numerical values” and couldn’t be validated (which is not true, or there was something wrong with the report they viewed—the report I have and provided when I established care in the original department that saw me at Mayo definitely has numerical values). The autonomic testing I repeated at Mayo’s request was negative, but it’s well known that those results can be inconsistent for someone with POTS. Especially in my case, we’ve been trying to manage symptoms. I guess the test results from the academic medical center where I was originally diagnosed—a top ten hospital in Neurology—weren’t good enough. I feel like I’ve wasted a year waiting for an appointment that got taken away. I live in the Midwest, so Rochester is closer to me, but I doubt anyone would see me there after seeing whatever notes the Neurology team at Jacksonville put in regarding my internal referral. I’ve reached out multiple times to the referring physician at Mayo who’s to be coordinating my care, and they’re deferring to Neurology’s decision. He’s not even acknowledging inquiries from my primary care team or me, pointing out the positive tilt table test that diagnosed POTS. It’s like being gaslit all over again. It would be one thing if I got the stock: “Mayo Clinic receives more appointment requests than we can accommodate” response, but this was an internal referral, and I was essentially told they doubt my existing diagnosis.

After all this, my neurologist (he’s neuromuscular and doesn’t treat POTS) recommended the POTS clinic at Johns Hopkins because they also treat long COVID, but I’m leery of traveling across the country again if I might be disappointed all over again. He thinks he can get me an appointment because he knows the director, Dr. Tae Chung, who’s published lots of research on POTS and long COVID. I’m afraid to get my hopes up again, and haven’t heard reviews from anyone who’s been seen there.

I’m so tired. I just want to be able to take action to try to move forward instead of being stuck in this waiting game of healthcare providers all saying, “Not it!”

I know this is a super-long post. If you made it this far, what’s been your experience with POTS before or after COVID? Where did you go for treatment—has anyone tried the POTS Clinic at Hopkins? Either way, what’s helped your symptoms?