[conspire] COVID-19 and Dysautonomia

[Deirdre Saoirse Moen]

I’m sure many of you have heard about some of the stories about “long haulers” - people who’ve had lingering covid symptoms for months on end, and a seemingly random collection of them. One such story:

https://theconversation.com/im-a-covid-19-long-hauler-and-an-epidemiologist-heres-how-it-feels-when-symptoms-last-for-months-143676

* racing heart
* heat intolerance
* gastrointestinal issues
* ringing in the ears
* chest pains

Sounds pretty random, right?

But it’s not.

Even physicians have reported being blown off by colleagues, though, when reporting symptoms like these, being told they’re all in their head. Which is funny because it both is and isn’t true. These are autonomic nervous system related things, and dysautonomia is common in autoimmune diseases, post-viral complications, and a lot of long-term failure diseases/syndromes like Parkinson's.

https://en.wikipedia.org/wiki/Dysautonomia

So it could be in the hypothalamus (in one’s head), or at any point between there and whatever vertebra controls that particular function (not in one’s head), or enroute to final delivery (cardiac muscle). I also find it cool that the sympathetic and parasympathetic are sort of opposite land. One YouTube doctor who has given some interesting talks about dysautonomia describes the two systems as a teeter-totter.

Ever since I got covid in January, I’ve had a nagging occasionally annoyingly high racing heartbeat. One day, it was concerningly high (not super high, just sustained), and I greyed out, so Rick took me to the ER. I went through the usual diagnostic tree, wore a heart monitor for two weeks.

Nothing.

It’s a good thing I was paying closer attention, huh?

I should thank an asshole on reddit who said there was no evidence that covid affects the brain, because I then went and found a bunch of covid/brain papers including this rather horrifying autoimmune encephalitis one:

https://www.medrxiv.org/content/10.1101/2020.07.23.20160770v1

The body of the text mentions “autonomic instability,” and searching on that on wikipedia brought me to https://en.wikipedia.org/wiki/Dysautonomia (which is what I expected, I was just checking).

Anyhow, I started paying close attention to *when* my heart rate was unusually high: when I was standing, and it went up over 130 when I was standing in front of the microwave a couple extra minutes waiting for coffee.

In humans, 70% of our blood volume is below our heart when we’re standing, but for quadripeds, 70% of blood volume is at or above heart level when they’re standing. So we do have an elevation of heart rate normally to compensate for that. It’s just that the signaling is off in some people. Which seems to be what’s happening: 

https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

Fancy way of saying my heart rate goes up too much when I stand, as the heart tries to compensate for the lack of blood flow to the brain. Functionally, I have altitude sickness when I stand up.

I’d already come to a lot of the same conclusions: my best exercises throughout life were bicycling, rowing, and swimming or yoga or strength training, preferably with intermittent horizontal parts.

I just had no idea that my headaches, migraines, difficulty concentrating, frequent nausea, chronic pain, altitude intolerance, and heat/cold intolerance were directly related to that.

Anyhow, I half think it’s funny that no one was able to figure it out for decades despite my filing of bug reports :P but then I was able to figure it out myself while *in the middle of the systemic effects of it*. Ugh. Finally found that repro case.

So, for me, long covid mostly seems to have been a dialing to 11 something that was already bad, just not something that sent me to the ER bad, and something that had been missed for a long time. How long? I suspect I’d had it since middle school, but it was probably only obvious to others in things like altitude intolerance back then.

Deirdre