Post Covid POTS?

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Hi everyone,

Looking for a bit of advice. I had COVID a couple of weeks ago and was quite unwell with it. I feel better but have been left with some symptoms that sound similar to POTS. I've noticed that I have been getting really dizzy and lightheaded, with my heart rate spiking to 120-130 and then I have heart palpitations and sometimes light chest pain. This doesnt always happen immediately when I stand up but happens quite consistently when doing light movement (E.g. if I walk up the stairs - even if slowly, if I reach and pick something up off the ground). I have also noticed it happening when I am sitting up straight, without something to lean on or just standing for a prolonged period of time (say more than 30 seconds). I have also been getting daily headaches, I have been absolutely exhausted, I get flushes where I get quite warm and start sweating, my head feels all over the place as if its lagging (if that makes sense?) and my legs can feel quite weak if I have been standing or sat up right for a while. Many of these symptoms are relived when I lie down as well. From everything I have read this sounds very similar to POTS.

I am trying to make an appointment with a GP but I am worried that given I only had COVID a couple of weeks ago, with these symptoms starting a week ago, I may not be taken seriously. I know that usually the diagnostic criteria for these things require you to have persistent symptoms for a number of week or even months. But these symptoms are really getting in the way of my life, both personally and professionally, and I am really keen to get this under control.

Any thoughts, opinions or advice would be greatly appreciated! Has anyone had similar experiences?

Thank you 😃

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3 Replies

  • Edited

    Apparently it's quite common for people to get these kind of symptoms for a few weeks or months after a virus. I can't remember the name right now – post-viral something or other. Unfortunately, the only doctors who seem to know this are the tiny handful who are familiar with autonomic dysfunction.

    In the past, it was noted that many people recover from this phase, although a small percentage unfortunately end up with POTS or CFS or similar.

    This is why POTS is not diagnosed until the person has had symptoms for three months, because the autonomic problems stirred up by a recent viral infection often resolve.

    COVID has been different, with a large number of people not recovering from this phase in the usual couple of weeks and being diagnosed with Long COVID.

    However, regardless of how long you have had the orthostatic intolerance and tachycardia, these can still be treated. Whether your doctor will know anything at all about any of this is a lottery though.

    Please note also that POTS is just one type of autonomic dysfunction, so even if a person doesn't meet the criteria for POTS, that doesn't mean they don't have autonomic dysfunction, it just rules out one particular syndrome.

    You may be wondering, after COVID has been going around the world for all these years with thousands upon thousands of people experiencing these temporary autonomic disturbances, why aren't there any public health announcements about it.

    E.g. If you've just had COVID don't go jogging for a couple of weeks because you may experience tachycardia or palpitations.

    I do not have any answer for that. Autonomic disorders have been so neglected that anything that happens in that area seems to be now trapped in medicine's blind spot. Autonomic specialists have been publishing and lecturing, trying to pass on their knowledge, ever since it became obvious that people were getting chronic autonomic problems post-COVID but no-one seems to be taking it in.

    Go to any major newspaper website and search "dysautonomia" or "autonomic dysfunction" and you will be lucky if any results come back, even though the same website will have hundreds of articles on COVID and long COVID.

    I hope you get some help and I hope your symptoms turn out to be the short phase that goes away, rather than chronic. If they do stick around, please visit the Dysautonomia International Vimeo channel and have a look at some of the lectures there for more info. The PoTS UK website also has lots of good info.

    Cheers, Sarah

  • Posted

    Oh, one more thing:

    Do a poor man's tilt table test yourself, and ask your doctor to do one too.

    This is a simple way to gauge orthostatic intolerance. It does not capture all the factors, e.g. it only measures heart rate and blood pressure, not cerebral blood flow. But it can provde useful info and you can use it at home to track your progress.

    Also, if you are able to do some gentle supine exercise, that may be helpful. Don't overdo things and start very slowly.

  • Posted

    Also, sorry to write so much, but after your doctor has ruled out other possible causes, checked your heart, etc., the usual approach to this would be extra fluid and salt intake (or oral rehydration salts) plus compression leggings or bike shorts. If that doesn't help, or your doctor thinks it necessary straight away, beta-blockers may be given to calm tachycardia.

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