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errnoteqnil commented on Long Fatigue: The exhaustion that lingers after an infection   bbc.com/future/article/20... · Posted by u/amichail
madaxe_again · 9 months ago
Oh. That’s interesting. Thank you. Yeah, my BP has been abnormally low since this thing and I am often finding I have a ridiculously high and weak pulse from nothing - usually when I stand up from tying my shoes, or picking up my daughter - I often have to grab something and breathe for a few moments while I break out in a cold sweat. And the whole “heavy lower legs” thing rings very true too, along with the constipation - fun side effect is I have developed horrendous haemorrhoids.

I’ve got into the habit of changing posture slowly, as it makes it far less likely I’ll keel over.

It’s pretty distressing as at the start of this year I was the kind of guy who would scurry up and down a mountain to watch the sunrise before breakfast, and now I’m struggling to walk to the car from the house.

And I can’t fucking sleep - again, it’s my heart rate - lying flat seems to send it soaring, and I have to wedge myself at a very specific half-reclined angle that invariably results in a sore neck for it to not.

Thank you. I’ll look into this.

errnoteqnil · 9 months ago
You're welcome, I'm sorry for what you're going through. You probably will eventually need to find a specialist who works with patients with dysautonomia or Long Covid but there's plenty of stuff you can do on your own or with a friendly PCP (or maybe more realistically, with a PCP who you can persuade to order the appropriate testing).

This does all sound like POTS and orthostatic hypotension though, maybe with other issues mixed in, but that's a good place to start.

Hopefully my other comment in this thread is helpful!

errnoteqnil commented on Long Fatigue: The exhaustion that lingers after an infection   bbc.com/future/article/20... · Posted by u/amichail
jhogendorn · 9 months ago
Keep in mind that POTS is specifically heart rate and not blood pressure. Blood pressure drop is orthostatic hypotension. They can both exists or one or the other, but are not the same thing and POTS is a specific term not an umbrella one.
errnoteqnil · 9 months ago
Fair enough! My original comment was more brief than precise...

If it helps the original commenter, and anyone else reading who's suffering from similar issues:

The umbrella term for syncope and fatigue when sitting up or standing is orthostatic intolerance (OI), and it's commonly seen in Long Covid and other post-viral illnesses. Both POTS and orthostatic hypotension can cause OI.

To the original commenter, there's a good chance you've already been tested for irregularities on a CBC and CMP, but a thorough doctor would generally also order tests for your thyroid, testosterone, iron, B12, and Vitamin D levels. You should probably also get screened for diabetes, autoimmune, and adrenal issues. These labs could help identify simpler, treatable causes of your OI and other issues.

But if all that is normal, testing for orthostatic issues like POTS and orthostatic hypotension would be extremely warranted for you as well. And it really can be as simple as an at-home test! A lot of doctors will only diagnose POTS or orthostatic hypotension with an official tilt-table test, but with the rise of Long Covid many specialists are willing to diagnose and treat patients based on simpler and cheaper at-home testing. And the initial treatments are often as simple as drinking additional fluids and electrolytes and wearing compression garments.

It took me several debilitating years and at least a dozen doctors to get diagnosed with POTS and orthostatic hypotension, and if any of them had suggested I buy a BP cuff and spend 30 minutes doing a lean test it would have saved me an awful lot of trouble...

errnoteqnil commented on Long Fatigue: The exhaustion that lingers after an infection   bbc.com/future/article/20... · Posted by u/amichail
madaxe_again · 9 months ago
I had some bullshit virus that the kid bought home about six months ago, and it royally fucked me up - since, I have been persistently lightheaded, get tired walking up a flight of stairs, and constantly feel like I need to sleep - but the cruellest thing is that I can’t. Since I had whatever, I haven’t been able to sleep more than 2-3 hours per day - I fall asleep, snooze groggily for ten minutes, wake up, repeat. It’s getting to the point that I’m not even bothering to try, any more, as it’s just a waste of time and energy. I find myself not having the energy to eat - it’s like trying to ram cardboard down my throat. I’ll cook for the family and by the time I’m done, sticking food in my mouth seems impossible. I’ve lost about 20% of my body mass since. I push too hard and I faint, or at least have to drop to the floor as the tunnel vision sets in lest I batter myself when I drop like a broken marionete - I’ve demolished a coffee table and a wardrobe, somewhat painfully.

Add to that that I have a toddler and live off grid and absolutely cannot get a break, and that my wife believes I am being a ridiculous hypochondriac, and… it’s hard.

I just have to believe it will get better at some point. Doctors reliably tell me there’s nothing wrong, and offer me anxiety medication. I’m not anxious - I’m just tired.

errnoteqnil · 9 months ago
This sounds like POTS (Postural Orthostatic Tachycardia Syndrome).

All these are common symptoms of POTS/dysautonomia, but the one that stands out for a potential POTS diagnosis is the persistent syncope.

You can confirm this diagnosis in 25 minutes with a simple home blood pressure cuff: https://www.amazon.com/Clinically-Validated-Unlimited-Pre-Fo...

Test instructions here: https://batemanhornecenter.org/wp-content/uploads/2016/09/NA...

There's no surefire cure, but POTS is very treatable. I made an account just to leave this comment.

u/errnoteqnil

KarmaCake day6November 30, 2024View Original