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

Posted by emo @emo, Feb 24 12:55pm

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?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@kitty2

Hi Christine, I am in Minnesota and wondering if you could please send me the information on Dr. Tam and her clinic. Phone number and location and how do I get into this clinic. I have Long Covid and just got out of the hospital last night after passing out in my driveway on sunday and falling flat on my face. My angel was watching out for me , as the worst of my injuries is I fractured my nose in two places and my facial battle scars. Thank heavens for my n95 masks..so I can cover it up. I have POTS / Orthostatic Hypotension, they figure that is why I passed out and fell. Any info would be helpful. Colleen Young forwarded this information on this Connect site. Hope you are ok..prayers and hugs for you. Sincerely, kitty2..alias Sue

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Hi All POTS People, I think I have previously given input to this discussion but can't find my comments. I am from MI. I had a bad case of COVID and pneumonia in August 2020 and basically, remained unable to live like my pre-COVID self until September '23 when I was FINALLY diagnosed with POTS by a Neurologist. I, now, take 30 mg of Mestonin twice a day. I still have break throughs of SOB, fatigue and dizziness but 80% of the time, I'm pretty active. I was diagnosed with CFS and fibromyalgia by Mayo about 20 years ago. I still take low dose Tofranil for my fibro. CFS is probably still laying in wait to re-emerge sometime in the future. However, needing more sleep than others is my only CFS symptom now. I try to forget about it. GI problems and headaches have not gone away with the POTS diagnosis. I'm trying Bentyl right now for my GI stuff. Please ask me anymore questions you have. Dr Tam's Clinic sounds amazing. I'm going to research it. Thank you, Lu

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@welchllb

Hi All POTS People, I think I have previously given input to this discussion but can't find my comments. I am from MI. I had a bad case of COVID and pneumonia in August 2020 and basically, remained unable to live like my pre-COVID self until September '23 when I was FINALLY diagnosed with POTS by a Neurologist. I, now, take 30 mg of Mestonin twice a day. I still have break throughs of SOB, fatigue and dizziness but 80% of the time, I'm pretty active. I was diagnosed with CFS and fibromyalgia by Mayo about 20 years ago. I still take low dose Tofranil for my fibro. CFS is probably still laying in wait to re-emerge sometime in the future. However, needing more sleep than others is my only CFS symptom now. I try to forget about it. GI problems and headaches have not gone away with the POTS diagnosis. I'm trying Bentyl right now for my GI stuff. Please ask me anymore questions you have. Dr Tam's Clinic sounds amazing. I'm going to research it. Thank you, Lu

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@welchllb. you can find all your comments by going to your profile (upper right corner) and then clicking Comments.

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@kitty2

Do any of my Long Covid Friends have Orthostatic Hypotension and POTS...I thought I had this condition and now I know for sure . I fainted or passed out in my driveway Sunday and fell face down and fractured my nose . With my angel looking out for me, no other broken bones that I am aware of. I get dizzy and lightheaded, short of breath and the fatigue is unreal. I would love feedback from any of you as I have had Covid several times now, which has turned my life around. Thanks, Sincerely Kitty2

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Hi Kitty2,

I don't have orthostatic hypotension, I have orthostatic intolerance and POTS. I cannot stand for more than 9-10 minutes with my B/P dropping, getting weak, retching, vomiting and passing out. I've broken my finger passing out, but your nose? Poor you!! Both of these diagnoses are post-covid. I can prevent the passing out if I sit down as soon as the symptoms start. So, I've sat on the floor at the DMV, Costco, and many other places. Long Covid has given me a run for my money!

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@kitty2

Hi Christine, I am in Minnesota and wondering if you could please send me the information on Dr. Tam and her clinic. Phone number and location and how do I get into this clinic. I have Long Covid and just got out of the hospital last night after passing out in my driveway on sunday and falling flat on my face. My angel was watching out for me , as the worst of my injuries is I fractured my nose in two places and my facial battle scars. Thank heavens for my n95 masks..so I can cover it up. I have POTS / Orthostatic Hypotension, they figure that is why I passed out and fell. Any info would be helpful. Colleen Young forwarded this information on this Connect site. Hope you are ok..prayers and hugs for you. Sincerely, kitty2..alias Sue

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Hi @kitty2- I had looked up Dr. Tam when @christine8 replied to me.

Here is the website for her clinic: https://www.mecfsclinicmn.org/contact-8

If it helps, here’s Mayo’s page about orthostatic hypotension: https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

And I like Hopkins’ page for POTS: https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

Have you been able to talk to your doctor about your symptoms? I know sometimes it’s helpful and sometimes not, depending on the provider. There can be different causes or contributing factors to orthostatic hypotension like medications and hydration that can make it worse even if COVID triggered it, that they might be able to help you rule out, or if there could be another cause.

Christine mentioned some great tips/strategies you could try or talk to your doctor about if you have someone supportive. Usually, increasing fluids significantly (at least 3 liters a day is often recommended for POTS, and some specialists recommend at least half of that to be electrolyte drinks), increasing salt (it helps your body hold onto fluids and both conditions are caused by or associated with low blood volume and can worsen with dehydration), and pacing of exercises. I take Klaralyte electrolyte capsules, which include sodium and have at least one bottle of electrolyte solution per day (Skratch Labs and Kinderlyte are my favorite brands, but they discontinued my favorite from Skratch Labs). But increasing salt depends on your health history. Sodium actually doesn’t necessarily impact everyone’s blood pressure, but it can, depending on risk factors and there’s a lot of vilifying of sodium that I personally feel is excessive, but that’s a whole other thing….

Strength training especially for the lower body like Christine mentioned also help because stronger leg muscles help improve the pumping of the blood away from your feet more efficiently. Blood (and oxygen) pooling in your feet causes the symptoms when changing positions. If you’re really symptomatic upright, you can start with exercises lying down and seated and then progress to standing. It helps your body adapt to being upright.

Those are usually the first things suggested to try (oh also compression socks or tights are recommended but I skipped over that because I couldn’t tolerate it >_< ), but it’s not always easy and can take time, especially the graded exercise.

There are prescription medications as options if it’s not enough.

I take Low Dose Naltrexone (LDN), a compounded medication. It helps my fatigue.

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@kitty2

Thanks Colleen,
Do you know any doctors that took over for Dr. Van, at the long covid program? I called today about being seen again for POTS. Thank for your note. Yes, it was scary, but I was lucky this could have been much worse. Thank you for all you do for all of us Long Haulers. Sincerely, Kitty2

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@kitty2, Among others Mayo long covid doctors include Dr. Ravindra Ganesh, Rochester and Dr. Bala Munipalli in Jacksonville.

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I had horrible POTS on a particular medication I was taking. Once I stopped taking it POTS went away. I’m pretty sure it was an allergic reaction. Have you investigated EVERYTHING you’re taking?

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i did not read all of the above. I'm at 4 yesrs. Not cured but improving.

Excersize and CBD help mr.

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