Thread by @exceedhergrasp1

Many may be unaware that their #LongCOVID presentation would dx with infection-associated chronic illnesses like #MECFS, #POTS, #MCAS, et al.

I promised I'd put together a thread on #POTS after the thread about management advice for the condition.

So let's get started! (1/)

First, let's discuss what #POTS may feel like.

POTS is postural orthostatic tachycardia syndrome. It means that when you change position from lying down to sitting up, or sitting to standing, your heart may pound, you'll feel dizzy &/or nauseated, and you can even pass out! (2/)

#POTS is: "A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 BPM in adults, or at least 40 BPM in adolescents, measured during the first 10 minutes of standing." (JHU)

Note: delayed responses can happen, too! (3/)

POTS is autonomic, so it affects many body systems.

Most with #POTS report post-infectious onset, just like #MECFS. Before infection, you may have had mild symptoms, too-- but after infection they may have become far more severe. (4/) #LongCOVID

ncbi.nlm.nih.gov/pmc/articles/P…

Certain autoantibodies have been associated with #POTS, showing something is off in the immune system as well as the nervous system. (5/) #LongCOVID pubmed.ncbi.nlm.nih.gov/28738696/

A GP can diagnose #POTS via a 'NASA lean test'-- it's pretty straightforward. (6/) #LongCOVID batemanhornecenter.org/wp-content/upl…

However, at a specialist clinic, they might perform a tilt table test (TTT) or full autonomic panel to diagnose #POTS. Here's a good quick rundown of tests that are typically part of an autonomic panel: (7/)
medlineplus.gov/lab-tests/auto…

OK, you get diagnosed! Now what?

There are many self-management tricks and tips.

What follows is some of what I've learned as someone with a diagnosis of autonomic #POTS.

None of this is intended to be medical advice, and remember I'm not a clinician, myself. (8/)

(1) COMPRESSION

People with #POTS have blood pooling when they stand. I have mediumweight compression socks from Sockwell. This can help prevent blood pooling.

Others use abdominal compression, too. (9/)

(2) WATER & ELECTROLYTES

My doc recommended I fill two, 1-L bottles of water before bed, adding salt or electrolytes, & "make sure they disappear" by the next day (on top of whatever else I was eating/drinking).

I've used Nuun brand & Trace Minerals PowerPak electrolytes. (10/)

(3) RECUMBENT EXERCISE

Exercising while being upright can be challenging in #POTS. Recumbent bikes are good, as is recumbent yoga:

Be sure you don't have #MECFS + #POTS before you try cardiovascular exercise! More here: (11/)dysautonomiainternational.org/page.php?ID=209
meaction.net/resource/pacin…

(4) DIET

(a) Eating more salt
People do talk about this not being the case for adrenergic #POTS, but I have that dx, & sometimes I still see benefit from salt.

Electrolyte powders in water are also helpful for similar reasons: blood volume boost.
. (12/)ncbi.nlm.nih.gov/pmc/articles/P…

4) DIET

(b) Avoiding carb-only meals
Big shifts in blood sugar affect BP through insulin-dependent AND insulin-independent pathways. Good fats + protein + carbs is fine for many, but an only-carb meal may make a POTSie feel worse. (13/)

5) DIET

(c) Eating smaller meals
Even in healthy people, eating a meal redirects blood flow to the stomach and gut; and eating a heavy meal moreso.

Since folks with #POTS have blood flow issues in the first place, this can worsen symptoms. Four small meals > 2-3 big ones. (14/)

6) MEDS

Meds can make a big difference! If your GP is certain "there is nothing to do" for #POTS here are some of Cleveland Clinic's suggestions. Very mainstream but they have all the big players: fludrocortisone, pyridostigmine, beta-blockers, etc. (15/) my.clevelandclinic.org/health/disease…

Meds are very individual. Some people POTS swear by fludrocortisone and others have poor responses, for example.

Important to acknowledge that good management makes a big difference even in cases where it is challenging to access meds.

Hope this is helpful! #POTS #LongCOVID

https://twitter.com/exceedhergrasp1/status/1627063019003064322

The thread that prompted the ask ⬆️ -- lots of good stuff in the comments too.

ASSISTIVE DEVICES--

(Of course!)

-Mobility aids (wheelchairs, walkers, walking sticks)
-Standing in line can be very hard for #POTS folk! Rocking back and forth and clenching the backs of your legs can help! There are also walking sticks that unfold to chairs. <3

And:

https://twitter.com/Beth_OBrien_/status/1629610032814862338

One thing we didn't mention: heat is vasodilating. So #POTS folks may get dizzier in the shower, for example, especially as they're standing so long. Shower chairs help! I also make sure I have an ice-cold drink by my bed as part of my pre-shower routine.

https://twitter.com/ShelleyElwood/status/1629990441050308609

For menstruating women, the first set of posts on my "hormones and infection-associated disease" thread has some direct correlations to POTS:

https://twitter.com/exceedhergrasp1/status/1423521139855224835

This from the BMJ a day or two after my first thread with a lot of similar advice: but note no mention of excluding ME/CFS or PEM and no mention of other common comorbidities. Be aware of the omission!

https://twitter.com/bmj_latest/status/1629194531634642945

Not to mention yesterday's @washingtonpost article about post-COVID #POTS:

https://twitter.com/BlakeMMurdoch/status/1630223549507194880