Post-Covid POTS | Covid-19 Survivor Diaries Episode 10 

Wow. This is a very accurate anecdotal account of my lived experience for the past 19 months with LH covid and resulting POTS/dysautonomia. My dysautonomia has caused paralysis and oxygen saturation issues which has stumped all of my doctors thus far. Thank you for highlighting the tremendous amount of medical gaslighting that has been occurring. It is VERY REAL and can be a barrier to seek care. It’s nice to know that I’m not alone on this journey. Thank you for helping to spread awareness about the long term effects of this awful virus. Every patient needs advocates like you to help spread the word so we can start to receive the care we deserve. Sending you love and light. ❤

I never had COVID but suffer from all these symptoms and more since Feb 2019. I really don't think life will ever improve. Want to get approved for dignity to die but since it is not " terminal" it's impossible. So where does that leave patients with no treatment or hope and that's finding their own way out which is unfair.

THIS IS IT!!! Thank you so so very much ♥️

Interesting. Can't wait.

Thank you for this. I’ve had pot since 2011 I am a health expert and have an extensive biological science background. I’ve had full fledged arguments with cardiologists both in New York and Florida for three years before I got diagnosed. I am a sports biomechanics, athletic injury correction and conditioning expert in nyc. And I know that I was only diagnosed because of my background and being able to speak the language. I was able to get myself back to full capacity for working, although I was not able to run anymore, I was able to work on all of my athletes and that was my work out. I’ve been a dancer since I’m three years old and that was ripped from me as well, I was able to dance again but nothing like I used to. Dancing would not make me feel very sick at the drop of a hat. I have extremely low blood pressure and very high heart rate but now I can’t get my heart rate very high and it feels like 120 is 200 in my chest. I also do athletic heart conditioning so I’m also well-versed in The cardiovascular system. I got Covid in May 2022 and it sent me back about eight years with my pots. Covid felt like the worst parts flair I had ever had and I am still managing it to this day as Pots is progressive and we really don’t know what the next day is going to be like. I originally got pots from a really bad flu in Feb 2011 But my diagnosis didn’t come until Sept 2013 by an electrophysiologist. I was maxed out on the only medication that raises your blood pressure, beta blocks, steroids and sodium medication all of which was actually making me 10 times worse than I was ordered to stop them all immediately. I’ve not had any medication since December 25, 2013. I’ve worked with many athletes that have had pots but can still actually do cardiovascular work where I cannot. However my programming works very well on people with pots because of how it’s delivered and received to and from the body. Yet and still I cannot run and I do struggle to dance again now since I’ve had Covid it’s made me much much worse my G.I. issues are much worse my body aches are much worse my migraines are much worse my vision is much more blurry my chest pains are pretty consistent and the palpitations gel kind a-fib now. there’s really nothing anybody can do. If I have one piece of advice for anybody reading this is don’t you ever tell somebody with pots they have anxiety because none of us have anxiety we have a heart working its ass off to help us because nothing inside of our processing systems is actually processing properly and the entire system is tripped up and the whole body is over working to complete exhaustion to do basic tasks like talking, breathing, heart control, digestion, thinking…even urinating. It’s debilitating and steals your life from You. People are getting this from Covid the same way I got it from the flu it’s a bad virus that completely rattles your autonomic nervous system. I have actually personally worked with a lot of long haulers and they’ve all recovered and are running marathons with no problem, the difference I see in pots from people who got Covid versus people who had pots pre-Covid is that the people who have gotten pots post Covid are recovering, whereas people like me our pots is just worse.

Thank you so much for this.

I just made a video about my personal post covid POTS story . Its a tough condition to deal with!

My goodness hearing from another long hauler who also went through Rheumatic Fever that resulted in a heart murmur, just dropped my jaw.

Tough having POTS then given covid. Blows up Dysautonomia into overdrive

wow

Could it be the jabberwocky?

POTS spelt backwards = STOP

Best hypothesis ever from the JHH profressor. But what is the cure?

Did we know at what tissue temperature did SARS COV2 better replicate ? Why ? Because at TWiV 659 at min29 Christian Drosten suggest that SARS COV2 better replicate at very low tissue temperature.

Did any of them get the COVID jabs?

How many boosters have you had?