[conspire] conspire Digest, Vol 202, Issue 26

Sun Aug 30 14:31:51 PDT 2020

Yeah, I don’t have PRES, I have POTS, which isn’t specific to having had COVID, just made worse by it. There are *lots* of people reporting weird random racing heartbeats, though, and those *could* be symptoms of POTS. (Or not.)

POTS is simply a lack of your body sending the signal to vasoconstrict in your lower extremities when you sit/stand, so your blood pools there and you don’t get enough blood in your upper body. This leads to your heart racing to compensate to get enough oxygen to the upper body. In my case, it also led to chronic headaches and migraines (not uncommon side effects). The simplest screening is lying down, take blood pressure and heart rate, sit up and wait 3 minutes, take bp/heart rate, stand up and wait three minutes, take bp/heart rate, compare the three sets of numbers. Not definitive, but most people will not have a significant difference between the three numbers.

I could not actually get a BP reading while standing. In my case, I have a subtype of POTS that’s related to signaling about blood *volume*, so it’s not too low blood pressure, it’s too little blood volume. So the right solution is somewhat salty water. But drinking a bunch of somewhat salty water before getting out of bed helps a ton with getting going in the morning.

There are tons of forms of dysautonomia, and we’ll be seeing a lot of them come out of COVID-19, even in young people.

This person wasn’t anywhere near young, but I think pretty much any one can look at the heart rate and blood pressure over time and go, “whooooooa, not happy.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7366085/

Deirdre

> On Aug 30, 2020, at 12:27, Rashmi Nunn <r.nunn at stanfordalumni.org> wrote:
> 
> Glad to hear that you are better since January! Found only 3 articles with the keywords below.
> 
> Dysautonomia and PRES (Posterior Reversible Encephalopathy (leukoencephalopathy) syndrome) refs.
> 
> —
> 3 articles re: covid-19 and PRES
> 
> https://pubmed.ncbi.nlm.nih.gov/ <https://pubmed.ncbi.nlm.nih.gov/?term=%28+Posterior+leukoencephalopathy+syndrome+and+covid+Posterior+leukoencephalopathy+syndrome.&ac=yes&cauthor_id=None&user_filter=&schema=none&page=1&whatsnew=None&show_snippets=on&format=abstract&sort=relevance&sort_order=desc&size=10>
> 
> PMID
> 32474362
> 32439646
> 32574838
> 
> —
> 
> Kishfy L, Casasola M, Banankhah P, et al. Posterior reversible encephalopathy syndrome (PRES) as a neurological association in severe Covid-19. J Neurol Sci. 2020;414:116943. doi:10.1016/j.jns.2020.116943
> 
> Division of Neurology, Mount Auburn Hospital, Harvard Medical School, Cambridge, MA, USA. Electronic address: mabdelrazek at mah.harvard.edu <mailto:mabdelrazek at mah.harvard.edu>.
> PMID: 32474362
> PMCID: PMC7245308 <http://www.ncbi.nlm.nih.gov/pmc/articles/pmc7245308/>
> 
> Abstract
> 
> •
> PRES is potentially a complication of severe SARS-CoV-2 infection.
> •
> Consider PRES in COVID-19 patients with altered mentation.
> •
> Consider tight blood pressure control in ventilated patients with COVID-19.
> •
> Hypertensive encephalopathy may prolong ventilator times in COVID-19 patients.
> 
> Keywords: Hypertensive encephalopathy; PRES; Posterior reversible encephalopathy syndrome; Reversible posterior leukoencephalopathy syndrome; SARS-CoV-2; coronavirus disease 2019.
> 
> 
> On Sun, Aug 30, 2020 at 01:00 <conspire-request at linuxmafia.com <mailto:conspire-request at linuxmafia.com>> wrote:
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> Today's Topics:
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> 
> 
>    1. COVID-19 and Dysautonomia (Deirdre Saoirse Moen)
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> 
> 
> 
> 
> ----------------------------------------------------------------------
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> 
> 
> Message: 1
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> Date: Sat, 29 Aug 2020 11:49:38 -0700
> 
> From: Deirdre Saoirse Moen <deirdre at deirdre.net <mailto:deirdre at deirdre.net>>
> 
> To: Conspire List <conspire at linuxmafia.com <mailto:conspire at linuxmafia.com>>
> 
> Subject: [conspire] COVID-19 and Dysautonomia
> 
> Message-ID: <75E48917-A197-4A80-BC0C-3B39AEEED5CB at deirdre.net <mailto:75E48917-A197-4A80-BC0C-3B39AEEED5CB at deirdre.net>>
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> Content-Type: text/plain;       charset=utf-8
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> 
> 
> 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:
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> 
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> https://theconversation.com/im-a-covid-19-long-hauler-and-an-epidemiologist-heres-how-it-feels-when-symptoms-last-for-months-143676 <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
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> * gastrointestinal issues
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> * ringing in the ears
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> * chest pains
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> 
> 
> Sounds pretty random, right?
> 
> 
> 
> But it?s not.
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> 
> 
> 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 <https://en.wikipedia.org/wiki/Dysautonomia>
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> 
> 
> 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.
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> 
> 
> It?s a good thing I was paying closer attention, huh?
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> 
> 
> 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 <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 <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 <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
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