Debilitating symptoms. Brain fog...extreme memory loss...spacey 24/7!

Im currently going through the same thing, i know this post is years old but if anyone has any more info now id appreciate it.

It started about 5 months ago, i woke up one day and i had no feeling in my body, couldn't even feel pain, and the symptoms that im about to explain, they were more severe on this day than ever, it was one of the most scary days of my life, after a few days it had come down a lot but they were still there, and from there every week they just get worse..

i sleep up to 16 hours a night and somehow im always tired, i never remember anything, even during a conversation i have to ask people to repeat because my brain just cant hold what they say, I'm constantly questioning whether i, or anything, is real, i zone out, pretty much all the time, it gets so bad sometimes that ill waste hours just staring at nothing, and it just feels like im not the one living my life, im watching myself do things through a window, im not thinking about what i say anymore, it just comes out, and i just do things without thinking like autopilot.. im even hearing voices now and seeing things when i try to sleep at night, its torture, doctors aren't willing to help, all they say is its just my brain coping with stress, but i need to know how to stop it, it's killing me

some things ive realised are, the not thinking about what im doing gets worse when im under stress, like in school or in a shop, anywhere where i have to interact with people, on a brighter, more blue day, my symptoms are a lot better, almost like good mood stops it, and the hallucinations only happen when i stay up later than usual

pleeeeaaase if anyone has more information it would save me, this has been going on for months and it only gets worse each week

Wow this thread took my experience and translated into English. I havent been able to communicate this effectively to my doctor and I think your comments are going to really help me. Here's my story and current path to solving this mystery.

So I've been to many doctors and have gotten an MRI, changed my diet, started taking medication etc. My doctor put me on welbutrin and zoloft for my depression and anxiety to see if that relieved the brain fog (it did not). There is a risk of seizure with the medication, but my dose isnt especially high (300mg and 50mg). Cannabis has ALWAYS relieved my symptoms and makes me feel 100% back to normal, so I took an edible last night around 10mg. I double checked for drug interactions and there were none! I have even taken edibles on this medication several times before with no issue but...

Last night I had something like a seizure (not sure if it was one as i could talk and move my arms and legs, but I was tensing and spasming all over my body in waves) and I started researching them to try and figure out of that's what it was. I fell down a bit of a rabbit hole when I came across encephalitis.

A lot of the symptoms align with what I experience. I even read a forum post from a girl who was diagnosed with encephalitis after she went in for pain behind her eye and at the base of her skull (I went to the doctor for the same exact reason). People also complain of their head feeling heavy or under pressure, which I have also complained to my doctor about. Was prescribed nose spray, didnt help. It's not that kind of pressure.

I've been to a neurologist for my eye and migraine pain, and they found that my MRI was normal. But, they tested my eyes and motor functions and found I have significant peripheral and central vestibular dysfunction. Heres where I get a little confused, so I'm just going to write exactly what the report says:

Under peripheral: "...denotes canalithiasis or cupulolithiasis involving the contralateral anterior semicircular canal. This is suggestive of paroxysmal positional vertigo."

Under central: "There is evidence of significant central vestibular dysfunction. Defective pursuit denotes a CNS lesion. Bilateral symmetric defective pursuits imply dysfunction of the cerebellum, striate cortex, or brainstem."

Now theres a couple of things interesting about this. For one, I don't have symptoms of vertigo, I rarely get dizzy or stumble, and I know where I am spatially in terms of position. They also didn't find any brain lesions. They did diagnose me with something called military neck, I forget the medical name. Basically, my neck does not curve in a C shape like it's supposed to, it's straight. I have since been treated with physical therapy, but my condition has not improved.

I went into this test expecting everything to be normal, I had some weird vision issues and that pressure behind my eye but at this point I assumed those were two separate instances and not directly affecting my eyes. My vision issues are more processing issues than performance, I can see fine but sometimes I'll space out and go blurry, or the world around me just doesnt seem quite right. Since my MRI was fine, my neurologist never followed up on this, and I forgot about it until now. Paired with my other findings, I think this could be significant.

But the real kicker for me is this. I once had 2 vials of blood drawn to test for any abnormalities that could explain my symptoms, and about an hour and a half later i felt this... sudden wash of clarity and presence drape over me. It was so strange, I felt almost myself again. I told my doctor this but she had no explanation, and was even a bit flabbergasted. Then LAST NIGHT AS I'M READING ABOUT ENCEPHALITIS, I LEARN THAT ONE OF THE TREATMENTS FOR IT INCLUDES DRAWING PLASMA TO RID YOUR BODY OF THE ANTIBODIES THAT ATTACK BRAIN CELLS!!

I am so excited about this and things make a lot of sense if this is indeed what I have. It's nothing as extreme as the girl who wrote Brain on Fire's case, but that sense of things not being right, of extreme anxiety, of feeling stupid when I used to be incredibly gifted, of having a short term memory when I used to be known in my family for remembering everything, that all aligns with autoimmune encephalitis.

Now I dont know if thats the cause of my symptoms for sure, but I am going to see a new neurologist and get some tests done. I just havent seen encephalitis mentioned in this thread before and thought this was a very real possibility for at least someone here.

Anyways, hello everyone! Hopefully people still check in here. I will update when I get the results 😃

P.S. sorry for weird grammar and sentence structure, my language skills aren't quite all there for obvious reasons.

I think i replied to the wrong post so double posting this here:

Wow this thread took my experience and translated into English. I havent been able to communicate this effectively to my doctor and I think your comments are going to really help me. Here's my story and current path to solving this mystery.

So I've been to many doctors and have gotten an MRI, changed my diet, started taking medication etc. My doctor put me on welbutrin and zoloft for my depression and anxiety to see if that relieved the brain fog (it did not). There is a risk of seizure with the medication, but my dose isnt especially high (300mg and 50mg). Cannabis has ALWAYS relieved my symptoms and makes me feel 100% back to normal, so I took an edible last night around 10mg. I double checked for drug interactions and there were none! I have even taken edibles on this medication several times before with no issue but...

Last night I had something like a seizure (not sure if it was one as i could talk and move my arms and legs, but I was tensing and spasming all over my body in waves) and I started researching them to try and figure out of that's what it was. I fell down a bit of a rabbit hole when I came across encephalitis.

A lot of the symptoms align with what I experience. I even read a forum post from a girl who was diagnosed with encephalitis after she went in for pain behind her eye and at the base of her skull (I went to the doctor for the same exact reason). People also complain of their head feeling heavy or under pressure, which I have also complained to my doctor about. Was prescribed nose spray, didnt help. It's not that kind of pressure.

I've been to a neurologist for my eye and migraine pain, and they found that my MRI was normal. But, they tested my eyes and motor functions and found I have significant peripheral and central vestibular dysfunction. Heres where I get a little confused, so I'm just going to write exactly what the report says:

Under peripheral: "...denotes canalithiasis or cupulolithiasis involving the contralateral anterior semicircular canal. This is suggestive of paroxysmal positional vertigo."

Under central: "There is evidence of significant central vestibular dysfunction. Defective pursuit denotes a CNS lesion. Bilateral symmetric defective pursuits imply dysfunction of the cerebellum, striate cortex, or brainstem."

Now theres a couple of things interesting about this. For one, I don't have symptoms of vertigo, I rarely get dizzy or stumble, and I know where I am spatially in terms of position. They also didn't find any brain lesions. They did diagnose me with something called military neck, I forget the medical name. Basically, my neck does not curve in a C shape like it's supposed to, it's straight. I have since been treated with physical therapy, but my condition has not improved.

I went into this test expecting everything to be normal, I had some weird vision issues and that pressure behind my eye but at this point I assumed those were two separate instances and not directly affecting my eyes. My vision issues are more processing issues than performance, I can see fine but sometimes I'll space out and go blurry, or the world around me just doesnt seem quite right. Since my MRI was fine, my neurologist never followed up on this, and I forgot about it until now. Paired with my other findings, I think this could be significant.

But the real kicker for me is this. I once had 2 vials of blood drawn to test for any abnormalities that could explain my symptoms, and about an hour and a half later i felt this... sudden wash of clarity and presence drape over me. It was so strange, I felt almost myself again. I told my doctor this but she had no explanation, and was even a bit flabbergasted. Then LAST NIGHT AS I'M READING ABOUT ENCEPHALITIS, I LEARN THAT ONE OF THE TREATMENTS FOR IT INCLUDES DRAWING PLASMA TO RID YOUR BODY OF THE ANTIBODIES THAT ATTACK BRAIN CELLS!!

I am so excited about this and things make a lot of sense if this is indeed what I have. It's nothing as extreme as the girl who wrote Brain on Fire's case, but that sense of things not being right, of extreme anxiety, of feeling stupid when I used to be incredibly gifted, of having a short term memory when I used to be known in my family for remembering everything, that all aligns with autoimmune encephalitis.

Now I dont know if thats the cause of my symptoms for sure, but I am going to see a new neurologist and get some tests done. I just havent seen encephalitis mentioned in this thread before and thought this was a very real possibility for at least someone here.

Anyways, hello everyone! Hopefully people still check in here. I will update when I get the results 😃

P.S. sorry for weird grammar and sentence structure, my language skills aren't quite all there for obvious reasons.

I am not sure what in world has happened to me. My issues started in March 2023. I had caught COVID and had a very stressful life situation going on (wife left me). I was a happy, healthy, 41 year old that was going to the gym everyday. Ever since I have been all messed up. I am convinced I am dying on a daily basis. I would gladly take death over what I am going through. My brain/head constantly feels like it is being crushed/squeezed or is on high alert or something or like it is going to explode. I do not know how to describe it. It is not a headache, it is much more sinister and painful. Same thing for my ears, it is like they are under massive pressure. I do not process things as quickly as I once did. I have lost the ability to sleep due to the head feeling, I am lucky to get an hour or two a night, and it is always dream sleep not deep, I can get more if I take Klonopin, nothing else seems to work. I constantly feel like everything is shaking or I am shaking. I cannot relax to watch tv, play video games, or read any more. I have lost interest in all things I enjoy. I lost the ability to laugh or feel excitement or happiness. The shaky feeling seems to run through my whole body, especially my chest/abdomen. I always feel like I am going to have a seizure or heart attack or lose control over my body fully. I have weird spasms and jerks and twitches. I can barely eat anything as it feels like my stomach is always full and bloated. Even water seems to make it mad. I have tons of gas non-stop for no reason. Digestion does not work normal any more for me, I either go like a week with no bowel movement then struggle to push out even a tiny bit or I am going 3 times a day and having massive rectal pain. It feels like something is squeezing my stomach area same feeling as in my head. I cannot stop urinating, like 25 times a day, no matter how much I drink. I do not feel like I am living in my own body or mind any more. I have strange internal pains in my chest, gastro areas, back. I constantly have a feeling of fear and like I need to run from every situation I am in. I always have the sensation like something is crawling on my back and head. I have blurry vision even with my glasses, and without them my vision is a million times worse than it was. My sinuses are acting very strange, like runny nose when I eat. Always filling up with clear stuff or white stuff all the time. I feel like I am allergic to everything. When I try to sleep at night, it feels like messages either to my brain or from it are getting interrupted by something in the neck area. I have strange spasms and jerks. I have had a brain MRI, EEG, tons of blood work all were clear. I keep getting told it is just anxiety. Like hell it is. I know I am depressed and I have had anxiety before. This is far far worse. I have been given a ton of scary meds that I don't want to take and that really didn't help anything. I have been on Effexor for 5 weeks now and nothing from that. Not sure if that is making me worse. Not sure if all the damn benzos have made my brain/nervous system worse at this point. I am convinced there is something seriously wrong with me and it is being missed. I see a therapist and a psychiatrist as well. No one understands what I am telling them. I fired my primary care for refusing to send me to a Neurologist. I see a new doctor soon. I am not sure how much more of this I can take. I am not sure if COVID did lasting damage to my brain or nervous system, unleashed an autoimmune disease (my ANA was negative though), or reactivated viruses or this is all just anxiety and depression. I just know this isn't living any more. I pray every night to no avail. My family has been there for me but do not believe what I say I am going through. I fear this will kill me soon or make me brain dead.

Wow, this is me also. I’ve had bouts of it in the past but over the last 3 weeks its been constant.

This time it started out with periods of being spaced out and blurry vision. Then it became waking up with mild tension type headaches that radiated from my neck and occipital region of skull, and spreading to eyes, top of skull, temples and an ear fullness. I also have dreadful TMJ.

Normally, this would seem common for me, especially if I slept wrong on my neck. But the spacey feeling has never ceased. I can’t think, can’t focus on anything. Woke up at 5.50am every morning regardless of taking Endep. Then two nights of no sleep at all. Now ive slept the last two nights again but the minute I wake up its back to space station again.

I get little bouts where I feel almost normal and my vision improves. Headaches have now gone but i still feel the constant brain fog and even derealisation at times.

Going for CT in 2 days but I’ve passed all my neurological testing (had to fight for a scan).

Was vitamin D deficient over a year ago but it was only mild. I do take D but haven’t had my levels looked at again.

I feel like I’m losing my mind and as a mental health professional, this has been particuarly trying to make sense of.

Has anyone had any joy yet??

Yeah, this is the only thread I've found that describes it well. Super gifted and intelligent kid, had some nasty depression at night and a huge fear of the human body (organs and diseases and the like) but otherwise totally normal if not exceptional. When I was 13, I decided to face my fears of the human body and think about my grandmother's cancer; how the little growths were metastasizing and ravaging her body, slowly blocking airways, stopping organs, killing her. It was horrifying and depressing and eventually I felt nauseous, so I finally let myself stop. Later that night, the nausea didn't go away, and for probably the first time in my life at that point, I went to sleep early. I woke up the next morning completely changed. I felt like a zombie, how I imagine being stoned is like. I distinctly remember putting my hand up to a poster on my wall and realizing the hand wasn't mine- nor could I fully comprehend the poster I had had in my room for years, it just looked like colors. It's now been 12 years, and the symptoms haven't gotten better once. I dropped out of school, gave up on any technical future, stopped playing strategic games entirely (I used to love chess!) and now I try to get by purely on autopilot. I can't think more than one thing at a time, reading feels like my brain is digging through clouds for every word, and it feels like mush to remember them. I can't think and talk, I can't hear and listen, I can barely retain information at all, especially dates and locations. I've lived in the same town for like, 8 years and I still have to use a GPS to get most places. I've seen doctors, therapists, psychiatrists, I've tried many antidepressants, antianxiety meds, one for my OCD, I'm still currently on a few. I've gotten many blood tests, had my thyroid checked, gone off and on cognitive behavioral therapy since it all started, and even this year for the first time since it happened felt "depression free." Nothing has touched the "brain fog", which is what I call it but it really understates how awful and complex it is. Around the same time it begun I started getting sleep paralysis, hot flashes in certain limbs, mainly feet and hands, extreme dizziness to the point of fainting when standing up sometimes or even just not eating for a bit and talking or laughing too much, never ending fatigue, if I let my body wake up naturally I'll sleep for 18 hours then force myself to get up since I have to at some point, then continuously be tired anyway. Same goes for if I discipline my sleep schedule, always tired, always low energy. Nothing works. The worst part is when they ask if it's better or worse this week, or did something help or whatever. They just don't understand. It's not like I'm a little tired, or my head kinda hurts today; I am literally incapable of proper functioning, it doesn't get better or worse, it's like a switch was flipped and now my life is permanently different. It does not change, this is the standard now. Living so long with it now, I've found ways to get by until I die, but I'd sure love to reclaim my life again.

Hey guys.

has anyone had any success with treating this?

Im going on 5 years with this issues.

pressure around forehead

severe brain fog like jet lag

no memory or focus

at first some vision disturbances and balance issues.

constantly tired

iv had every test under the sun. nothings come up except anxiety and depression. i can accept that but my argument is there must be something that can be done even if it went from being from permanent symptoms to half.

im almost at the point of looking into a procedure of some sort that would trip the brain, almost like a restart . im that desperate