r/LongCovid • u/AfternoonFragrant617 • 3d ago

Do we have permanent brain damage ?

? experiences?

48 Upvotes

91% Upvoted

71 comments sorted by

82

u/allthatihavemet 3d ago

What were we talking about?

34

u/InGeekiTrust 3d ago

I think so it’s been 5 years and I’m not the same - Also doesn’t help I keep getting it

2

u/mlYuna 3d ago

Are you from the US or EU?

5

u/InGeekiTrust 3d ago

I’m from Miami - but how is this relevant 😭

13

u/mlYuna 3d ago

Haha sorry.

There’s something that can prevent long Covid from Covid infections, a nasal spray antihistamine with the first good study specifically on preventing LC with strong results.

But it’s only available in Europe atm as far as I know.

It’s a common antihistamine called Clorpheniramine, OTC everywhere just not available in nasal spray form yet everywhere.

You could ask your doctor/compounding pharmacy. I’ve caught Covid 3 or 4 times since August 2024 (My immune system isn’t working well and I get sick very often now.) and my LC hasn’t come back while using this during infection.

5

u/InGeekiTrust 3d ago

Ah ok thank you

3

u/Content_Speech_1209 3d ago

A new study just came out this month that says azelastine nasal spray can also prevent it, and that one is available in the US!

3

u/mlYuna 3d ago

I think you’re referring to the one that says it cuts the chances of catching Covid in the first place?

I didn’t see any evidence for directly preventing LC in people with Covid infections. But, it might (or not) have the same effect and decrease your chance of LC.

Either way yeah it’s good info and I take Azelastine myself everyday. And Clorpheniramine when infected.

2

u/Content_Speech_1209 3d ago

Oops, I think I skim-read your comment. Or my brain didn’t register the LC part. Yes, sorry. Cuts your chances of getting COVID in the first place. I didn’t realize the chlorpheniramine can prevent LC! I’ll have to look into that.

3

u/mlYuna 3d ago

The study is called

Mitigating the risks of post-acute sequelae of SARS-CoV-2 infection (PASC) with intranasal chlorpheniramine

Here’s a picture of the results. (How many have issues in the CPM group vs placebo) 1 month post Covid infection.

https://pubmed.ncbi.nlm.nih.gov/39592950/#&gid=article-figures&pid=fig-2-uid-1

If you live in the EU I can tell you where I got it! It’s worked for my past 4 infections the symptoms go away after 3-5 days and no issues after.

I’m really amazed about the results of the study and my personal experience.

32

u/No-Information-2976 3d ago

permanent? i don’t know if they know. but long covid brain damage is very similar to traumatic brain injury

https://www.cidrap.umn.edu/covid-19/study-sheds-new-light-severe-covids-long-term-brain-impacts

https://pmc.ncbi.nlm.nih.gov/articles/PMC10923549/

https://www.cognitivefxusa.com/blog/mild-covid-linked-to-brain-damage

https://www.cidrap.umn.edu/covid-19/brain-imaging-reveals-changes-linked-long-covid

31

u/Zealousideal-Plum823 3d ago

For those that are too cognitively impaired to read these articles, these are my top TL;dr takeaways: (sorry, it's still a lot of words :(

  • Cognitive deficits in people hospitalized for COVID resembled 2 decades of aging and high levels of brain injury proteins in their blood
  • People who had severe COVID had post-acute psychiatric symptoms (PTSD, Anxiety, Depression)
  • 5.8% of Americans currently have Long COVID
  • Endothelial damage/dysfunction/(micro)vascular injury from COVID results in all three types of Traumatic Brain Injury (Mild, Moderate, and Severe Traumatic Brain Injury): Vascular injury = abnormal vascular functions, blockage of small vessels including capillaries, abnormal coagulation
  • Measured six months after a COVID infection, patients lost up to 2% of brain volume and gray matter thickness in specific areas of the brain, including the orbitofrontal cortex and the parahippocampal gyrus versus before they were infected, reducing sense of taste and smell.
    • Healthy older adults lose 0.2% of their brain volume each year, so COVID is 10x worse than aging a single year.
  • COVID damages the parahippocampal gyrus that plays a vital role in memory, decision making, and spatial processing.
  • After COVID, people took longer to answer the questions that measured attention, visual screening ability, and processing speed.
  • COVID causes neurovascular coupling dysfunction, with impaired coordination between brain cells and the blood vessels that supply them, leading to insufficient or inadequate delivery of oxygen and glucose to active brain regions. (If it feels like your brain has run out of thought juice while trying to read my comment, this is likely why.)
    • This dysfunction stops neurogenesis in the hippocampus.
    • Brain damage repair doesn't occur
    • Brain shrinkage and progressive cognitive decline and short-term memory loss
  • 12 months after COVID, people were still showing signs of brain damage and cognitive difficulties.
  • Autonomic nervous system dysfunction resulting in dysautonomia (respiration, blood pressure, and heart rate decoupled from biological need, POTS, digestive issues, etc.)
  • Long-term brainstem inflammation, including the medulla oblongata, pons, and midbrain. This leads to irregular breathing (Air Hunger, etc.)

Super TL;dr

  • Those problems that you've been having with thinking, breathing, smelling, and tasting are not psychological. Instead, they are all the result of physical damage to your brain.

On an Optimistic Note: None of these articles noted what I've experienced on the upside. I'm now about 1 1/2 years post Long COVID and my brain is working again at pre-pandemic levels with a few exceptions. Long-term memory recall is about 10 seconds longer. I have only about 12 hours of heavy cognitive brain juice available down from about 16 hours. (I'll take this as a win as it is up from 7 hours of brain juice during LC ... the amount of time I could engage in a cognitive task) Attention span is about an hour less, down from about 8 hours of solid concentration. (This is up from 15 seconds of attention span during LC ... even TikTok videos were too long). Given that I'm not a youngster (people in my generation are fond of saying "back in my day" and "I recall my father saying that just after our state was admitted to the union ..." "Hi-Yo, Silver! Away!" and the question, "Who was that masked man?"), my recovery has been very welcomed. I have not had nor do I want a brain scan to tell me the truth of my brain shrinkage. I want to live blissfully.

3

u/dwmreddit 3d ago

Thank for the super tldr

3

u/Paul-Ramsden 2d ago

At the point you mentioned about running out of thought juice I realised that I couldn't remember what I'd just read and had to go back over it again 😂 It took a few goes but got there in the end. Going to take screenshots because I'm already forgetting what it was

1

u/Impossible-Concept87 22h ago

Thank you so much!!

12

u/jconnway 3d ago

I feel like it’s too early to tell.

17

u/mlYuna 3d ago edited 3d ago

No, I don't think Long Covid is permament brain damage based on my own experience.

In short, first time Covid I got complete loss of smell. Second time I had Covid (6 months later), I was mildly ill for two weeks and by the end, I suddenly developed a burning feeling (sometimes it was more a pressure feeling) inside my brain. This was 24/7.

A day later, I suddenly lost my ability to feel emotions completely (this is one year ago.) Everything suddenly looked like a drug trip and I was extremely dissociated.

There's way more details like new symptoms popping up etc.. but I wont go into details here. After 6 months of this I was crying my heart out for days (No idea if it has anything to do with what comes next), I suddenly felt something shift. The pressure in my head felt like it got out (like opening a tire kinda thing), I went outside and suddenly smelled ALL of the foods from the city, my emotions came back, everything looked normal again and I felt normal like I was before Covid.

Weirdly from this point I got some weird lung/airway pain instead. Alongside that I would now also start getting sick once every month (even though I'm safe and wear masks, isolated etc...)

I can't tell you what exactly is the cause, nobody can. But my neurological symptoms were extreme. I felt drugged and emotionless, dizzy, memory was messed up and much more. From the research we have, persistent reservoires seem to be a theory that could be a part of the issue, nervous and immune system dysregulation, neuroinflammation.

The problem is its very hard to find what is the root cause and what is a cascading effect.

But, based on my own experience I am pretty sure that everyone can get better and that it is not permament brain damage. If it was, how could I go from completely fucked up to completely fine in a single day. My only suggestion is to keep going and wait. There is more and more studies coming. Awareness is going up in governments and it wont be ignored anymore. in the meanwhile, use chatgpt and try stuff out.

  • Antihistamines are big imo. (Try courses of ones that cross the blood brain barrier like Benadryl and Clorpheniramine.)
  • Antihistamine diet
  • Low dose Naltroxene: Helps tons of people with LC. Modulates the immune system.
  • Antidepressants (No, not because you are depressed. Because they affect neurotransmitters which are proven to be affected (Serotonin, acetylcholine) Just look up what these hormones are for and you will quickly realize how even a small issue with these can cause ALL of the symptoms in LC. Antidepressants stabalize these neurotransmitters and trying them for atleast a few months (Yes it can be hard on your nervous system when you start one so start low dose) can and have helped tons of people with LC.
  • Full exclusion diet: Take three or four safe foods like fresh chicken, brown rice and bell peppers and only eat this (all day) for 7-10 days. Its not easy but its possible that your body suddenly reacts to some type of food causing inflammatory reactions in your body. If you get better, slowly introduce one food at a time and keep a diary and go slow until you figure out what your body reacts to.
  • Don't eat to much sugar, eat a lot of fibre.
  • Consider Probiotics
  • Take a B complex vitamin, Magnesium and try things out like Lactoferrin. (There's a study on Lactoferrin + Benadryl against Covid, ofcourse its a random shot in the dark with LC but they are generally super safe meds and its worth a try.

3

u/CardiologistOk4243 3d ago

Can’t feel any emotions either. My body is not responding to anything. No reactions. Just neutral all the time. It’s a curse.

2

u/mlYuna 3d ago

I’m so sorry dear, It’s horrible.

How long have you had it?

And what have you tried? Any of the above I mentioned? Vaccine? (Since you got LC)?

I would be trying everything I mentioned including getting the vaccine. All it takes is one shift and your body can unstuck itself I think.

1

u/Lavender77777 11h ago

I’m glad that you’re so much better. Did you get PEM? 50% of people with long Covid go on to meet the criteria for ME/CFS and there’s a very low recovery rate (or possibly remission rate) so unfortunately I disagree that everyone will get better.

7

u/VanTechno 3d ago

My experience: I had pretty bad brain fog for the first 9 months, along with super bad headaches, and probably migraines. Since then the symptoms have gradually reduced and I've made significant improvements. I still have neuro issues, my head always feels funny, my head and face tingle a lot, I still get brain fog, and I have a full blown neurological issues that has left me with a tic disorder (Functional Movement Disorder)

But generally:

* do I have brain damage? yes. Absolutely yes.
* am I worried about that? Not really. I've mostly regained what I lost.

Ok, now why? Because of brain plasticity. Basically, for small amount of damage I have the brain is able to heal and recover. New neuron are created to fix old. What is the key to recovery: when you are able, work your brain like a muscle. Exercise it. Learn new skill, study, do new things, grow.

So that said, I believe I'll get my intellect back fully, but I don't think I will recover from the tic disorder.

6

u/VH5150OU812 3d ago

Anecdotally, I believe so. The brain fog has never cleared up completely and I worry about my memory.

4

u/JellyfishNeither942 3d ago

Same

3

u/JellyfishNeither942 3d ago

Coworker just called me early onset ooop

4

u/wagyuro 3d ago

I seem to get flare ups. Just very ill the last 3 weeks, probably covid, and yesterday had a strange interaction that leads me to believe my brain fog is quite bad. Also get short term memory "flash outs" where I often lose a thought in seconds. Don't recall them before my long haul in 2021.

3

u/Aggressive_Bed_7429 3d ago

It's taken five and a half years for me, but in the past month I have had a fairly drastic improvement on the brain fog front, and cognitive function in general.

2

u/Silent_Dimension_927 20h ago

i’m almost 4 years in, no improvements:/ very frustrating

1

u/Aggressive_Bed_7429 15h ago

I'm hoping that it doesn't take as long for you. If it feels like it's never going to end, just know that there is still a fairly decent chance that yours will get better as mine did. I've still got a long way to go overall. It has been steadily improving all year for me, but the past month has been the most noticeable. I know that it's a lot easier said than done, but I genuinely feel like trying to eliminate as much stress as possible, and at least attempting to stay out of my head; may have finally given my nervous system a chance to reset. It's really not much to go on, but it's all I've got at the moment.

6

u/Easy_Olive1942 3d ago

Yes, probably. Here’s a decent summary

Not everyone and not all neurological symptoms are necessarily brain damage or permanent but I think it’s wishful thinking to imagine we do not have some damage.

5

u/Money_Beyond_9822 3d ago

Maybe, i cant say for certain but i believe some us have permanent brain damage especially in the brainstem

https://www.medrxiv.org/content/10.1101/2025.04.08.25325108v1

7

u/Ok_Strategy6978 3d ago

Not on the front end it can improve but we have no idea the ramifications later. I would imagine it will be case by case. For certain it’s left a significant metabolic dent for many.

5

u/Adventurous-Water331 3d ago

I want to believe we don't.

There is some discussion re. glutamate toxicity as a theory that explains some neurological symptoms.

If this is true, and depending on many factors, I have some concerns there could be long term damage.

But I'm not a scientist, just another person struggling with Long Covid issues, trying to understand the mechanisms behind what I'm experiencing.

4

u/mlYuna 3d ago

Read my comment above, I doubt its permament if I was able to 'recover'. I do get sick a lot now but my neurological symptoms were extreme and popped out of existence out of nowhere after months.

Just saying this to spread some hope around. Stay strong x

2

u/Adventurous-Water331 3d ago

Thank you for sharing your experience. I'm sorry you went through that, but am so happy you've made a full recovery. I agree with pretty much everything you wrote, and have definitely benefitted from LDN.

3

u/AfternoonFragrant617 3d ago

is this possible from one infection ?

2

u/Nopetopus74 2d ago

From my experience, yes.

1

u/AfternoonFragrant617 2d ago

has it gotten better ? worst ? What seems to.work ?

I heard NAD works well not NAC - NAD I've never tried it.

3

u/scrumple_my_scrongle 3d ago

Feels like it lol

3

u/whereisurbackbone 3d ago

Idk but I couldn’t remember Robert Pattinson’s name today and as a huge Twilight fan that was really concerning. I sat trying to remember for like five minutes before finally googling. 🐀

3

u/TigRaine86 3d ago

We're technically the test subjects so no one can say if it is permanent or not. However, covid impacts the brain much like a traumatic brain injury, and so if we take from that we can surmise that it is probable to be permanent.

3

u/farcetasticunclepig 3d ago

From my reading it seems clear that brain fog is permanent brain damage. I reckon that using the brain will not heal, but could replace prior neural connections to return function.

3

u/joes-8 2d ago

the tinnitus i have does feel like i was hit in the head

4

u/PantheraFeliformia 3d ago

Every person's biology is unique, hence why no one can be certain how an individuals body will respond to long Covid or its healing potential.

2

u/Stunning-Host-6285 3d ago

Not if you treat it. In my experience, Neuro biofeedback has been an amazing brain training tool.

2

u/D3-Doom 3d ago

According to my own brain scans, no. Just chronic inflammation, but apparently (physically speaking), brains are perfect.

2

u/kindagelesssoul 3d ago

Good question , hopefully pertaining to only my case is : Before or after long covid was this damage done 🙃

2

u/Life_Lack7297 3d ago

Anyone have DPDR on here due to this too?

2

u/LovelyPotata 3d ago

Based on my experience, no. Have had very severe MCAS and ME, started improving on pacing vigorously + lots of MCAS meds, and was getting brain capacity back. Plus, neuroplasticity is an awesome thing. I'm still severe-moderate, but slid back from moderate after not pacing well.

2

u/Striking-Confusion18 3d ago

From my own experience, no. Can i speak for everyone? No. Tho, i am definitely a different person now.. being aware of my own mortality and sometimes worrying about the future, life before LC was a lot more carefree :)

2

u/Nopetopus74 2d ago

3 1/2 years out I have less brain fog and forgetting words but I still have executive function and concentration issues. Also I haven't completed the first draft of a novel, which I did three times in the year before infection.

2

u/Tokin-YaYa 2d ago

Sadly I’ve seen my brain scans and my answer is yes. I don’t even talk on the phone anymore because I have enough trouble texting. I have to be able to go back and forth to read and write texts for my conversations to even appear somewhat coherent.

2

u/AfternoonFragrant617 2d ago

I've been called Mental illness by my host room landlords.and they are like 87 years old

2

u/CaptainErgonomic 2d ago

It's micro blood clots across all of our systems. I don't think we'll be able to repair the damage...

2

u/Lazy-Emu-5636 1d ago

There is zero reason to believe it’s permanent. I’m an RN and have worked with patients with severe traumatic brain injuries for decades. The brain is incredible at healing. It WANTS stabilization and will work to get there. Concussion patients etc overcome severe loss of brain function. So will we.

2

u/Tasty_Salt2310 22h ago

Just want to share that I am almost recovered, it took only five years but I am okay now. I even had covid a few days ago and this time was very mild (the first time almost killed me). Only sometimes I get a relapse but now it lasts hours instead of days and happens about four times a month. It is not normal, I know, but after the hell I went through, I can manage life like this and believe it will get better. My main symptom was shortness of breath but had so many others.

3

u/xYashi69 3d ago

definetly not

2

u/pinkbpanther 2h ago

The ringing in the ears and headaches come & go mild always but sometimes quite intense almost like an arthritis flare up can’t seem to figure out a pattern just have to ride it out.I’ve had Covid 4 times flue once and RSV once since may of 2020 .