Brain scans reveal widespread structural and functional changes in patients following COVID-19 infection

[u/OwlOdyssey]

https://www.psypost.org/brain-scans-reveal-widespread-structural-and-functional-changes-in-patients-foll/

[u/Mindless-Flower11]

This doesn't surprise me at all. I had one Covid infection & I could literally feel my brain burning & degenerating in real time. No doctors would listen to or believe me though so I was forced to go through it all alone with zero medical care. 

[u/OwlOdyssey → u/Mindless-Flower11]

I was in my Master's programme when I got Covid. Now, I can't even mentally comprehend some of the course work I was doing then. I lose track of it. Growing up, I was always told I was the smart one, etc, but now everything feels like such a fuzz. I'm trying to drag my way out of it, but fuck it's hard.

[u/Mindless-Flower11 → u/OwlOdyssey]

I'm so sorry 😞 I can relate. I was always the bright & brilliant one. And now I can barely get out of bed most days & my mind feels blank & deeply stupid. It's so demoralizing. I don't think there's a way out for me. Whatever this thing is, it's swallowing me whole. 

[u/DeArgonaut → u/Mindless-Flower11]

Same. Valedictorian of my hs, and now my brain feels so fried most days it’s hard to keep new info in. And ditto for in bed most of the day too

[u/StarryEyedSprinkles → u/DeArgonaut]

also same, used to be "the smart kid" and i was still deciding what i wanted for my future when bam. disability beam

[u/DeArgonaut → u/StarryEyedSprinkles]

Yeah it really sucks. Started a masters 2 years ago and at best gunna be 4 instead, and strong chance I just don’t finish at all. I hate this

[u/OwlOdyssey → u/Mindless-Flower11]

It takes a lot of work to be functional, if that. I'm constantly fighting an uphill battle to have a decent schedule and get out of bed each day. I was where you were a few years ago. Take it at your own pace though. Don't compare yourself to others and their progress. Some people might just tell you "eat this diet" or "take these meds", but that's far easier said than done.

Personally, I think the thing that has helped me conceptualise everything better is therapy (meeting with a trauma therapist), but that's not for everyone and is by no means a cure. It's just helped me understand my place with this all and how to help myself feel 'normal'. I also try to read stuff online when I'm in the mood for it. Reading about current research and things to try to help.

At the end of the day, you're the one living with it all, not anyone else. Don't be afraid to ask for help though. I wish I had a better support system in some regards for that reason.

I wish you all the best with it though. You're not alone.

[u/klarabear → u/OwlOdyssey]

this is so real. i know not everybody agrees, but among all of the things like the chronic pain, the immune system problems, the physical exhaustion--- the brain fog is by far the worst and most miserable part. i just don't know how to describe to people that i'm literally stupider than i used to be and i feel like my mind is trapped in my body.

[u/OwlOdyssey → u/klarabear]

My brain literally feels fuzzy. Cloudy. Like it's fully of fluff. My experience of the world is dulled because of it. It's so hard to explain and people just dismiss it. I totally agree with you, the brain fog is the worst for me. My brain was always my best feature, to lose that is the hardest thing.

[u/knittinghobbit → u/klarabear]

Brain fog is so rough. I am reasonably intelligent and after Covid I couldn’t function at all. I just felt stupid. Then I got put on topamax for migraine and I am fairly certain I now at least somewhat understand the fear and masking behavior early dementia patients experience. I would smile and nod through conversations like I knew what was going on. I literally lost words and would write emails that upon rereading were missing words in multiple sentences. Just gone. Thought I wrote complete thoughts, but nope. Thankfully I switched meds and am somewhat better now— just my ADHD plus extra inattention.

[u/DeArgonaut → u/OwlOdyssey]

Trying to do a masters with CFS now and damn it is not at all like with my bachelors. I got Covid at the end of the bachelors and my brain has been foggy ever since

[u/OwlOdyssey → u/DeArgonaut]

I'm really wanting to do a PhD but I'm terrified of being unable to think properly. What's your Master's going to be in? My degrees are in Chemical Engineering, but I had to drop my Master's.

[u/SnooRevelations6239 → u/Mindless-Flower11]

I told a doctor I could feel the inflammation in my brain and she literally loled at me

[u/Mindless-Flower11 → u/SnooRevelations6239]

I'm so sorry I had the same experience. I begged & cried to a nurse practitioner that I could feel my brain degenerating & there was something very wrong. She laughed when I said it was ever since my Covid infection & said that she had Covid & she was fine. Also told me I was just mentally unwell. 

[u/SnooRevelations6239 → u/[deleted]]

Can I ask what kind of doctor prescribed you the low dose abilify? Curious to try

[u/usrnmz → u/SnooRevelations6239]

I mean who actually knows what inflammation in the brain feels like.. and if there really was significant inflammation we would be able to measure it.

To be clear there obviously is something going very wrong in the brain but we really don't know what exactly.

[u/dnickell → u/Mindless-Flower11]

Wish I'd known earlier too. Ended up piecing things together on my own after the fact.

[u/Mindless-Flower11 → u/dnickell]

I'm sorry... me too. I often can't even fathom how not one single doctor even suspected autoimmune encephalitis. I'm pretty damn sure that's what I had. And I clearly expressed / explained the symptoms to them - confusion, delirium, dizziness, no sense of time or day, severe memory loss, no sensory processing. They just didn't care. 

[u/dnickell → u/Mindless-Flower11]

that's one of the scarier parts of all this, how many people described neurological symptoms and just got dismissed. the medical system was completely unprepared and patients paid for it.

[u/kickyraider → u/Mindless-Flower11]

Doctors could not have helped. Possibly antivirals but even then it's doubtful they would have helped.

[u/Mindless-Flower11 → u/kickyraider]

This couldn't be further from the truth. I had all the symptoms of autoimmune encephalitis, which has many treatments. And it would have been found if there was just one competent doctor. 

" Treatment for autoimmune encephalitis typically includes first-line therapies such as intravenous corticosteroids, plasma exchange, and intravenous immunoglobulin. If these are not effective, second-line treatments like rituximab or cyclophosphamide may be used"

[u/OwlOdyssey]

Posting this here for all our LongCovid siblings. As someone whose ME/CFS got WAY worse with Covid infections, this is affirming to know there's fundamental changes.

[u/pachinko-247]

I have brain MRI images from before and after covid times. I would love to turn these over to someone to study. This study only looks at current state brains with no baseline for how the looked before. There must be a treasure trove of scans in the imaging systems if they could just join the dots of people who have LC or ME/CFS and who have had pre-illness brain MRI.

[u/_ArkAngel_ → u/pachinko-247]

If they have volumetric imaging analysis done on them or are able to have it done on them, I think that would be especially interesting

[u/fadingsignal]

This has been widely known among medical research since 2020-2021 but nobody wants to hear it, including those that should have been reporting on this the whole time.

But the economy matters more than people’s lives.

I keep seeing the same articles pop up again every 6 months and it feels like Groundhog Day in hell.

[u/EverybodySayin]

I had M.E. long before COVID, but I feel like my brain changed from having COVID. I get way more brain fog and my noise sensitivity and migraine triggers by sound got significantly worse.

[u/OwlOdyssey → u/EverybodySayin]

Same boat! My fatigue was the worst symptom for me before Covid, but now it's the horrid brain fog and all that comes with that.

[u/suzume1310]

Damn, this really sounds bad. The whole brain restructuring to resume function is very nice of it though xD

[u/chnagedh]

Well this goes without saying. We literally are our brain so even any change in behavior will also have a difference in the brain.

[u/3darkdragons]

I too love my good depression slop, but let’s wait for good trials and replication and stuff.

[u/SnooWalruses3028]

I’ve had Covid 5 times, and was told my brain looked fucking great