The transcript can be found under the video.
In today's video, I will be talking about the connection between Long Covid and POTS.
You might be suffering from Long Covid and I've heard a little bit about dysautonomia or POTS but you're wondering how might this affect you, what does it mean for you and most importantly what actionable steps can you take from all this?
If you've had POTS from a reason other than Covid, you might be wondering about all the exciting research that's coming out about Long Covid.
What of the treatment plan that's recommended for those with Long Covid can you help to apply for yourself?
Before Covid, POTS and autonomic dysfunction was barely talked about, but now with Covid, there has been increased funding and studying this, which is great, and scientists are continuing to study this phenomenon, but what do we know as at this moment that we could use to move forward?
What is Long Covid?
So first off, what is Long Covid?
There is currently no universal definition for Long Covid. Many people refer to the WHO definition, which is that:
Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis.
One important thing that I'd like to point out is many with Long Covid have expressed that they thought they were recovering just fine from Covid and then maybe four weeks later is when their POTS symptoms started.
Long Covid Symptoms
I was recently speaking with somebody that felt better but, you know, a few weeks after Covid so they resumed their pre-Covid activities, going out, working and then that's when their POTS symptoms started.
When it comes to the symptoms of Long Covid, they really affect many parts of the body. So, just general symptoms would be something like: tiredness or fatigue that interferes with day-to-day life, symptoms that get worse after mental or physical effort also known as post-exertional malaise when it comes to respiratory and heart symptoms, there might be a difficulty breathing or shortness of breath or palpitations, when it comes to neurological symptoms there might be things like headaches or sleep problems or dizziness or brain fog, digestive symptoms might be something like diarrhea or stomach pain and then just other symptoms in general, muscle pain, joint pain, aches.
Now, if you're someone who has POTS or dysautonomia before Long Covid came along, you might instantly recognize this list of symptoms.
I still remember when I heard about Long Covid in early 2020. My first thought was: "these people have some sort of autonomic dysfunction. Why is no one talking about this?"
But soon enough the conversation quite quickly shifted to discussing autonomic dysfunction. But it seems though that a lot of doctors are still not aware of POTS or autonomic dysfunction, which is unfortunate because with POTS there are things that doctors can recommend and can tailor treatment better to patients.
Although there haven't been as many things that could have been researched because of the lack of funding, there are still specific things that do make a difference. There are lifestyle changes, which I talk about on this channel that you're watching this video on, and also various medications that can make a difference in quality of life, which for example, one YouTube channel that discusses that is York Cardiology, he works with past patients that I'll link down some of his videos below that you can learn a little bit more about that side of things as well if you're interested.
Check out York Cardiology YouTube channel: https://www.youtube.com/c/YorkCardiology/search
Who has Long Covid?
So, who's affected from Long Covid? Estimates vary, they range between they're thinking maybe 10 to 30 percent of those with Covid, go on to have Long Covid. So that's something like 30 million people just in the US if you take that 10 percent number. And then some estimates are that two-thirds of those with Long Covid, then have go on to have autonomic dysfunction. So that would mean that in the US, with these conservative estimates, there are at least 22 million new people suffering from POTS or another form of dysautonomia.
What are dysautonomia and POTS?
Now, I've mentioned dysautonomia quite a few times in this video so what is dysautonomia? and what is POTS?
POTS stands for postural orthostatic tachycardia syndrome, which is a form of dysautonomia, so it's a disorder of the autonomic nervous system. This branch of the nervous system, regulates functions that we're not consciously controlling, such as the heart rate, the blood pressure, sweating, body temperature.
The key characteristics of POTS are some of the specific symptoms that I listed before that were Long Covid and also an exaggerated increase in heart rate when standing. So again, really wide-ranging symptoms like: tiredness, fatigue, post-exertional malaise, palpitations, headache, brain fog, sleep problems, dizziness, stomach pain, and muscle pain.
How is POTS Diagnosed?
So how is POTS diagnosed? POTS is diagnosed if your heart rate increases by 30 beats a minute or more usually within 10 minutes of standing.
So for example let's say you're seated or laying down and your the beats per minute are 85, and then you stand up and it shoots to 120. That would generally be then a diagnosis of POTS would be made.
So what is the connection between POTS and Long Covid? Why is POTS a complication of Long Covid? Around half of POTS patients report that a viral trigger is what actually triggered their dysautonomia, so there's many infectious agents that are associated with autonomic dysfunction and there's a lot of hypotheses as to the mechanism behind this but it seems that kind of once that virus or bacteria comes in, it affects also the autonomic nervous system. Thus throwing things out of balance, thus causing the multitude of symptoms.
When does POTS come on?
A really important and interesting distinction is that many people with Long Covid POTS will report that they had mild autonomic impairment prior to having Covid. So I talked to a lot of people who mentioned that they had symptoms for years, but no one really took them seriously or perhaps their symptoms were more mild and then Covid came along and significantly worsened their POTS.
I was in a really similar situation where I had really more or less kind of mild POTS, I could still function day to day and then one thing happened and my POTS got significantly worse and that is when I was finally diagnosed after many, many years of symptoms.
Treatment differences for Long Covid and POTS patients?
So, since the symptoms for these for Long Covid and for POTS are so similar, should these patients be treated any differently?
For a Long Covid it's important to rule out cardiopulmonary damage or any other organ damage and some doctors also use a pharmacological treatment based on anti-inflammatory agents for that subset of patients.
But I was recently listening to a doctor talk about, at a conference, how he kind of handles Long Covid POTS patients versus just POTS patients, and he kind of admitted in a way that the treatment is quite the same, it's quite similar.
Other than the difference I previously announced. So what does this kind of mean? It means that a large part of what I talk about on this channel is the way that Long Covid patients are also being treated, the ones that have POTS, so kind of they're looking at ways of stimulating the vagus nerve anti-inflammatory lifestyle focusing on breath work and movement once it's deemed appropriate.
ME/CFS
But since I did mention movement, one other small difference that has been found is Long Covid patients do seem to be more prone to CFS, to ME than regular POTS patients, so that is where it's extremely important to take lessons if you have Long Covid to take lessons from both the POTS community and then very importantly to take lessons from the CFS/ME community when it comes to proper energy management.
The silver lining, if any, is that once you dig a little bit more into the POTS world, into the CFS world, these communities have been around for a long time, and there's a lot to learn from them.
There's a lot of modalities to try, to implement and to find a regimen of things that improves your symptoms. You can also feel free to browse around this channel or at my blog, to read more about POTS and to find something that suits you.
I'd love to hear from you in the comments down below. If you're a Long Covid POTS patient, what have you learned from the past movement or the ME/CFS movement? and then vice versa too, if you had POTS prior to Covid coming around, what have you learned from managing your symptoms from what you've kind of seen around at the in the Long Covid movement?
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