u/lunerenard

I’m a few months into post viral fatigue (Covid) — currently bedbound bc of dysautonomia/fainting issues + weakness and sensory issues causing PEM.

I’ve been in PEM for the last 3 weeks — unsure if rolling or a crash — despite cutting back all activity. Now am dealing with adrenaline when I wake up, go to sleep, and throughout the day. Sometimes it alternates with the heavy PEM type fatigue. I’m afraid it’s masking the PEM and I’m overdoing it more (although how, when my day is just bed with earplugs and eye mask?)

What has helped y’all get out of that buzz/surge cycle?

What I’m already doing: breathwork, yoga nidra, vagus nerve exercises (humming, tapping) and I take a beta blocker (prescribed by cardio). Can’t tolerate much light or sound. Thanks in advance!

Hi all, wondering if anyone’s had similar experiences to mine (I’ve gone through the sub but couldn’t find similar details).

Some background: like many, started having POTS-like symptoms after a COVID infection — HR spiking when upright, dizziness, near fainting. Because of this (and some suspected co-diagnoses) I’ve been bedbound, getting rolled to the bathroom bc otherwise I hit the 130s standing.

Had my tilt table. HR spiked >60 bpm in the first 3min. They didn’t take a BP reading until the 3min mark, which is just about when I passed out, BP and HR tanked. Notes say “positive” but also “vasovagal syncope” which, as many people here have said, is just fainting. My issue isn’t the fainting, because I usually don’t — it’s the HR that won’t go down when I do normal life tasks.

Has anyone had a POTS Dx with VVS? I’m kinda mad they didn’t take more BP readings bc I feel like that would offer more info. Feeling lost and was really hoping this would lead to treatment bc salt/fluids and compression is uhhh not cutting it!

Hi all, I tested positive 3 weeks ago and just had what seems like my first bout of PEM (crushing fatigue that felt like the flu all day). I’m trying to see specialists, but feeling really doomed as I see the outcomes for folks who experience PEM are worse overall. Anyone have hope or advice? (Other than pacing—trying my best there already.)

Hi all, reposting with edits after flagging (my bad, new here).

My question: if your dysautonomia was caused by COVID, how soon did you notice something was off after getting infected? (E.g. immediately/acute phase, weeks/months, etc.)

Hi all! Quick background: third concussion this Feb, I'm 3 months out. Unlike my first two, I set about finding treatment ASAP, and in April finally got a concussion specialist + PT, who confirmed a lot of my issues are neck-driven (thank you to this sub for that!).

Started PT and actually made a lot of progress. Last week, I would say I was at 95%—almost no pain or symptoms unless I exhausted myself, and passed my treadmill test at PT! But then (of course, then). Late last week, I was in a car, the driver braked hard, and my head bounced back against the headrest and forward again. I did worry, but with everything I now know and talking to my doc, we're pretty sure it's not a new concussion.

That said. In the week since, my symptoms have come back hard: screen intolerance, occipital headaches, nausea, dizziness. My doc did say to lay off my PT exercises until my next appt, but I'm asking this crew: do you have success stories re: working on your neck so small impacts like this DON'T have as much effect? Feeling really discouraged that I was basically back to normal and am back here again without knowing how long it'll last. Plus, hard not to feel like I can't get into cars if something this mundane will reinjure me!

A note, I AM looking into concussion-specific therapy and EMDR for the trauma response piece we all talk about, it's just slow with insurance.

Thanks in advance, and sending solidarity to all of us here!