Unsure if Dysautonomia (Long Covid)

[Nihongowasha]

Greetings,

31 Male. Looking to see if any of my symptoms match or seem very similar to anybody here who has been officially diagnosed with a dysautonomia-related issue. My doctors have suspected POTS but I was immediately dismissed by a cardiologist a couple years ago during testing. Long story short, I've had long-covid for 2 years now; diagnosed with assumed ME/CFS based off of 2 years of clean blood tests and heart tests. My doctors do not want to do any more testing at this point. I'm not turning here for a medical diagnosis, just wanted to see if my suspicions about dysautonomia are possibly true so I can continue to press my doctors. I have not had any sort of official autonomic testing.

Symptoms:
-Fatigue
-Sensitivity to light
-Dozens of new eye floaters, blurred vision
-Constant bounding pulse that is visible in my neck and stomach (was not visible prior to infection). Can feel my pulse throughout my body when I lie down; again did not exist prior to infection
-Periods of pulsatile tinnitus when very fatigued
-Exertion intolerance (heart rate spikes immediately after very light exertion)
-Increased sweating
-Unrefreshing sleep
-Neurological symptoms: constant spaced out feeling, some lightheadedness

The cardiologist who dismissed me did a poor man's tilt test in his office. My resting heart rate was at 50bpm; when I stood up it immediately spiked to 100BPM in the matter of 10 seconds. The issue that got me dismissed, however, was that it returned to 55-60BPM within the 1-2 minute range; it was not a sustained increase. I have had instances at home, however, where I've gotten up off the couch after a nap to use the restroom, and my heart was racing and pounding in my chest for several minutes and it was extremely uncomfortable. I also experience palpitations whenever I climb a flight of stairs or am physically active at my job. Just last week my elderly father asked me to help him lift a package into the back of his truck and that alone caused my heart to race and pound in my chest for a few minutes. I used to regularly split wood and work on my parents' farm prior to getting sick so I was very active and physically fit.

I know something is wrong with me, I just want to see if I'm similar to anybody here so I can get some closure. The lack of a definitive answer is driving me crazy. Thank you very much in advance!

[JennKay]

@Nihongowasha -- Sorry to hear about your situation. My experience and symptoms have been similar to yours. I've found that propranolol helps me with most of the symptoms you listed, but I still struggle with ectopic palpitations, mainly PVCs, that can be very distracting and make me feel very fatigued. Am hoping to find something that will work for the PVCs.

I'm not a medical doctor (I'm actually a research scientist) but I came across this a little while ago, the COMPASS 31 autonomic scoring system. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3541923/

The scoring system is explained in the article and you can Google COMPASS 31 and find a PDF version for you to assess your symptoms. Again, not an official diagnosis, but it might give you a bit of reassurance and is something you could take to your doctor. 

[MomtoGiuliana]

You mentioned you were evaluated by a cardiologist--was this an EP?  I was also initially evaluated by a cardiologist, years ago, who determined there was "nothing wrong with me".  It was several years later that I was finally correctly diagnosed with POTS by an EP.  You may want to try to find a specialist to evaluate you.  Even if your hr is going back down to 50 bpm eventually, the symptoms you are describing suggest further evaluation to me.  Do you feel better if you can stay well-hydrated?  That typically helps POTS patients to feel better.

[Nin]

Are you in the US or UK?

[MikeO]

Just by feeling or having increased symptoms from the pre to post infection IMO would warrant more investigation. Not all Docs are equipped to deal with POTS or Dysautonomia or are just not interested in getting caught up in a complicated diagnostic so you may want to seek out a specialist if you are not comfortable with your care team.