Some possible answers: Diagnosed with POTS

Posted by mbryant1380 @mbryant1380, Dec 19, 2023

So, I had my first Long Covid Recovery Care appointment and was diagnosed with POTS. Which the doctor feels was brought on by Covid. He gave me some management information for it, since there’s no cure.
He also stated that there is a theory that Covid virus could still be lingering in the body months, years later (someone in this support community mentioned this as well) that’s why some people experience long COVID symptoms and maybe some new ones. He suggested either getting boosted it might stop the replication of the virus in my body and gave me the information for the Yale University Long Covid study with Paxlovid.
I’m not sure what I should do, I didn’t have a good reaction to the vaccine, so there’s that. I definitely don’t want any more additional symptoms or effects from the booster. But I don’t want to keep suffering through these symptoms.
Also anyone with POTS with some suggestions or advice would be greatly appreciated.

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

Colleen Young, Connect Director | @colleenyoung | Dec 21, 2023

@mbryant1380, using the group Search, I found additional discussions relevant to POTS and Long COVID. See the lisiting here: https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/?search=POTS&index=discussions

mbryant1380 | @mbryant1380 | Dec 21, 2023

In reply to @colleenyoung "@mbryant1380, using the group Search, I found additional discussions relevant to POTS and Long COVID. See..." + (show)

Thank you!

silverfish0409 | @silverfish0409 | Dec 22, 2023

In reply to @mbryant1380 "Thank you!" + (show)

Years ago I caught a virus after the virus I developed chronic fatigue syndrome also syncopy which is pretty much the same as pots,this is a neurological problem where your heart and your nerves and your brain don't work together like they should,after my second bout with covid and 2 vaccines my syncopy went wild put me in the hospital twice metoprolol and lots of water maybe even a small dose of zoloft

silverfish0409 | @silverfish0409 | Dec 22, 2023

I had to go to John Hopkins back in the 90s to get diagnosed,try not to put yourself in stressful situations I know it's hard dealing with this long covid desease

2tnt | @2tnt | Dec 22, 2023

In reply to @smdawson540 "I have POTS from Long COVID which attacked my autonomic nervous system causing several life long..." + (show)

@smdawson540

I have POTS from Long COVID which attacked my autonomic nervous system causing several life long issues. I go to the Johns Hopkins Long COVID clinic where I am lucky to have a physical therapist who works specifically with POTS patients. I have been told there are not a lot out there. I wear an abdominal binder, compression socks are also an option. I can't wear compression socks due to CRPS in my right foot - extreme form of neuropathy. I have a physiatrist at UVA and a Rheumatologist. This team of doctors has been wonderful. Had many trials with other doctors and tons of medical testing before getting to this point. I am trying to be in the present with my medical issues and do what I can to alleviate/mitigate as many of the symptoms as I can. Since wearing the abdominal binder, I can sit up and stand most of the time without insane dizziness. I also do not pass out when wearing the binder. I got it on Amazon. Best thing I have bought since getting Long COVID. I have more "less horrible days" now. I still have some really bad days as the barometric pressure impacts my neuropathy and CRPS. I have been told I might not be able to fly again. At this point, going out of the house to do anything is enough. I have made a point to research each of the issues that Long COVID triggered in me instead of looking for a cure for Long COVID. I need to be able to understand what is wrong with me now and what I can do about it right now. I tend to live day to day now. It helps keep my anxiety level in check along with breathing exercises. The more anxious I get, the more my symptoms all go crazy. I am so sorry you are going through this! I would have your blood work done to see your antibody level before being boosted. My Rheumatologist did this for me. I have a very high level of antibodies. She has advised me to not get boosted. This may not be the right thing for you, but the more you know the better your doctor can help you. I am very big on being a self advocate. Especially since we got the unlucky position of being the forerunners of this. Good luck. Again I am so sorry you and all of us have this!

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https://pubmed.ncbi.nlm.nih.gov/32757696/

pat814 | @pat814 | Dec 22, 2023

I believe the average age for menopause is 51, which is when I stopped menstruating.

beachbum | @arichards3 | Dec 22, 2023

In reply to @gsgambhir "Please advise which doctors will be willing to prescribe Paxlovid. All clinical trials are already closed...." + (show)

@gsgambhir my GP here in Charleston said that the rules had recently changed and he would be able to prescribe for travel so that I had it if needed.

silverfish0409 | @silverfish0409 | Dec 22, 2023

Usually a heart doctor understands pots ,I was diagnosed with chronic fatigue syndrome back in the 90s after a nasty virus which I never found out what it was,then the syncopy started which is pot's I was diagnosed at John Hopkins with tilt table test