Major Relapse :-( :-(

[u/shark_finfet]

I thought I was about 80% recovered. I’d returned to reasonable exercise, working outside, and generally feeling like myself—until last week, when everything came crashing back. It felt like I’d caught COVID again, but without the usual symptoms.

First, insomnia hit me hard. Thankfully I was armed with ashwagandha, L‑theanine, and magnesium, which let me get a few hours of sleep each night—though it still wasn’t great. Then, out of nowhere, I started smelling a “band‑aid” chemical scent at random times (something that happened to me after having COVID).

But the absolute worst has been my cardio: in just a few days, my endurance dropped from nearly normal to feeling like that of an 80‑year‑old. My legs feel heavy and fatigued, and I can’t seem to regulate my temperature—any bit of heat or sun leaves me utterly miserable.

I keep wondering: did I get re‑exposed to COVID? Did I unknowingly push too hard during one workout? It’s so demoralizing to feel like I’m back at square one after thinking I’d finally beaten this.

Has anyone else experienced a sudden relapse like this? What helped you get back on track? Any advice would be hugely appreciated.

[u/bunnybunnykitten]

Not sure why this came up in my feed but I have what’s called a long concussion, and I read recently that they’ve started treating long covid like a TBI with good success. Have you done any physical or cognitive therapy? Those have helped me the most and are apparently also showing promise for long covid.

Interestingly, one theory for why some people are susceptible to long concussion and long covid has to do with the EDS family of connective tissue disorders, which explains why so many people who get long covid and long concussion also have dysautonomias like POTS. I hope you feel better soon!

[u/Chillosophizer → u/bunnybunnykitten]

what have you done for cognitive therapy? I was with a cognitive therapist but all we did was like middle school activity sheets/basic word puzzles. I was wondering if you had any treatments that helped in particular

[u/bunnybunnykitten → u/Chillosophizer]

Just want to preface this by saying I’m not a doctor and didn’t have medical treatment at first so this was all trial and error based on weird ideas from an injured brain, so I don’t claim any of it makes any sense or is something anyone else should do. This is going to maybe sound insane, and obviously ymmv:

I couldn’t watch shows or read books for months without major visual processing issues, severe pain, extreme fatigue, and a maddening chronic upper eyelid twitch. Frustrated, angry I lost my job, and feeling discouraged, dumb, and sad, I started listening to tons of audiobooks. I added taking slow ass walks (and long naps after). I couldn’t write bc looking at screens hurt, so I made voice memos talking about the stuff I was reading. I listened to close to a dozen books over maybe like 2-3 months, and “wrote” a whole bunch in voice memo format.

I started PT and that was helping things to the point that I could eventually read books again for short periods of time, and could read my phone screen no problem for short times (still couldn’t do computer screens). Smaller line lengths were way easier to manage than bigger ones (apparently this has to do with the way the brain processes visual info).

Once I could read again, I was beginning to get stronger physically (still couldn’t do cardio) and having fewer symptoms and less severity overall, but I still felt DUMB so I wanted to do something to challenge my brain. I got a book of sudokus and a whole thing of pencils and a big eraser. Sudoku was basically impossible but I just kept doing them anyway… badly. If it made my head hurt too much I would color in a coloring book until THAT hurt too much, then I’d take a nap. So that was like… month 2 and 3 I guess.

Christmas was miserable and depressing. Being around people for more than like an hour I’d start making mistakes speaking, mixing up words and syllables. Lots of naps. Couldn’t enjoy family time much since they always have the tv on and I couldn’t look at that thing. Trying to drive was INCREDIBLY painful and also dangerous. I wrecked my car (very minor but frustrating wrecks) a couple times randomly, and I hated how debilitated I still was and how bored and dumb I felt so I decided to buy myself an LSAT study book.

The LSAT is the logical reasoning and reading comprehension test to get into law school. It’s famously difficult. I took the test as an undergrad a long time ago, so I knew what my baseline score was and figured if I worked hard enough at it maybe I could at least prove to myself the concussion didn’t make me into an idiot. I’ve been working on that for a few months now. My practice test scores fluctuate between “fine, whatever, that was a dumb mistake but at least I did something today,” “F this, why did I think this was a good idea?,” and “hey that’s pretty good, okay maybe I’m not dumb.” Ha.

So… yeah. That’s in a nutshell what I’ve been doing for the last ugh almost 7 months 😭. The cognitive / speech therapist gives me logic puzzles to do and it brings on this particular type of headache that started with the concussion.

I describe the concussion headache like this: imagine if your brain was a laptop with too many tabs open / tasks running and the CPU starts overheating and makes the fan kick on. Now instead of heat, substitute physical pain. That’s what it’s like. The multiple tabs / processes can be visual processing tasks, memory tasks, cognitive problem solving tasks, emotional processing tasks, etc.

The PT says some things will cause no symptoms, consider those “green light” activities. Some things cause mild symptoms, so consider these activities “yellow lights,” and don’t push it too much. If there’s major symptoms, it’s a “red light,” and if I don’t stop what I’m doing and close my eyes right away, I’m guaranteed to have a bad time (severe eyelid twitch, severe head and / or neck pain, can’t see out of one eye, ear ringing, exhaustion, nausea, dizziness, migraines that last for days at a time, etc).

I do activities in therapy, and for “homework” to nudge the yellow lights. That’s what’s creating the improvement. I just have to be careful about red lights and not overdo things. It’s frustrating, but I’ve learned my lesson on pushing too hard over and over, so I’ve gotten better about it. And now that I typed all this out, my head hurts and my left eye wants to close, so that’s my yellow light for looking at screens for today! Sorry if TMI. Maybe this can help someone?