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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?
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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?
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.
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1 ReactionHello 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.
Christine
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3 ReactionsHello!
Your story resonates and hurts my heart at the same time. I feel your weariness deep in my soul.
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.
I also live in the Midwest and I am a part of the ‘three tiers’ of the Mayo system. I see providers at the Mayo clinic in my small community, the Mayo clinic and hospital in a nearby, much larger community, and Rochester.
I had a LC provider in Rochester through the CARP program, but he recently left the system. The Long Covid Clinic in Rochester won’t see me because my LC was diagnosed more than two years ago. I guess my LC is too long for them! I am still having active, new health issues due to my LC.
My providers in the ‘lower tiers’ of the Mayo system are also frustrated with this rejection and they are working very hard to help me. I know I’m exceptionally lucky.
I had to do three tilt table tests in the Mayo system, all with positive results, before the doctors in Rochester would recognize my POTS diagnosis. I am now 54, so I don’t match the “usual” POTS diagnosis.
I have hyperandrogenic POTS due to Long Covid.
I manage my POTS symptoms by taking a beta blocker, low dose naltrexone, 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.
PEM/CFS interfere with these exercises. I’m usually able to do a few exercises on my infusion days.
All of these treatments, and education on this illness, have made my POTS much more manageable than before using these measures. I still have breakthrough HR spikes that cause problems, but they are much less frequent.
I understand feeling like we ‘should’ utilize the Mayo system because they are supposed to be all that. In reality they are an advanced care facility, but not all that different from any other advanced care systems. (It’s taken me a while to be peaceful with this.)
I’ve been encouraged to seek care elsewhere for some of my very specific, uncommon issues.
Perhaps we should take that advice. It’s our life that’s on the line, we need to do the best for us.
I am going to see a new LC doctor this spring. Her name is Dr. Ruby Tam. She runs the ME/CFS Clinic Minnesota. Her clinic is free so everyone with ME/CFS, Long Covid, fibromyalgia, and other related illnesses can receive the quality care they need. I had a consultation phone call with Dr. Tam, my appointment is a five month wait. All of her appointments are online.
I don’t know if this clinic will be a good match for you, but maybe an option.
Hopefully some research into other facilities will help you make health care decisions that are the very best for you.
You deserve the best care and respect from providers.
Please feel free to ask me questions.
I’m wishing all the best!
Christine
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6 ReactionsHi Christine- Thank you so much for your kind note, for sharing your story, and for the encouragement.
Dr. Ruby Tam’s clinic sounds amazing. I took a look at her website and just knowing there’s someone out there like Dr. Tam and her team who want to volunteer their time for people with complex cases like ours lifts my heart up a bit. I don’t have CFS, so I don’t think I’d qualify to be seen at her clinic, but I’m still glad to know it’s out there.
You’re right that Mayo may not be so different from other “elite” medical systems…or at least maybe they’re not immune to the same bureaucracy, blind spots, and limitations that exist at other places. Between the fancy commercials, the strong culture there, and even on these forums reading people saying they’d “walk across cut glass” to get into Mayo, honestly it’s hard not to wonder what I did “wrong” to have a negative experience and get turned away. Mayo “should” have come through for me, especially after I already got there (or that’s the thought in my head) and it’s hard to make peace with knowing they didn’t. Sometimes it’s easier to blame myself…just like with your long COVID being “too long” >_< . Crazy.
It still hurts and hopefully I’ll get to the point soon where I can feel more at peace with it like you said.
My neurologist feels strongly he could connect me to the POTS Clinic at Johns Hopkins (Dr. Tae Chung), so if he wants to help me, I should let him help me. And maybe with this referral…maybe he’ll be an even better fit for me than the neurologist at Mayo.
I take LDN as well. May I ask what dose you take?
The strategies you mentioned remind me that I can redouble my efforts with fluids, salt, and slowly getting back into my strength training program. The fatigue and central sensitivity slows my ability to progress, like you mentioned. But I can keep trying if it helped before.
I hope your appointment with Dr. Tam goes well and I’m wishing you all the best too. Thanks again!
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3 ReactionsDo 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
Hi @kitty2, I moved your post to this existing discussion so you can more easily connect with others dealing with long COVID and POTs.
- POTS, Pre- or Post-COVID: Where did you find treatment and what helps?
https://connect.mayoclinic.org/discussion/pots-pre-or-post-covid-where-did-you-find-treatment-and-what-helps/
Using the keyword "POTs" in the group search, you'll find several POTs-related discussions:
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/?search=POTs#discussion-listview
So sorry to hear about your fall. That must've been scary.
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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1 ReactionHi 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