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

Hi all - I've been watching this thread for a while now and firstly wanted to say a huge thanks to you Taylor and everyone else who's shared on here. It's been such a help to hear from you all.

I also wanted to share my story, and now that I'm feeling somewhat better (yay!), point to some things that may have helped. The honest truth is I don't know what was causing my issues, and which of the below actions I took for sure helped (if any!). But hopefully this gives some ideas of things to look into.

My background:

For 3 years now I've been feeling tired, spaced out and with a kind of constant dizzy feeling. Up until last year this had been quite mild, but from August 2021 things became much more noticeable. I started getting headaches - both a fairly constant tension headache at the back of my head, and (for the first time in my life) an intense migraine-type headache with a visual aura which would last a few days at a time, but then fade away for a week or 2. My eyesight felt 'weird' - hard to describe but things just seemed a bit disconnected and jarring. And I was getting a lot of brain fog and difficulty focussing - both on work and everyday tasks. I also found socialising very draining and even a conversation over dinner with friends hard to engage with. This all started to escalate until by December I felt so tired and spaced out I was unable to work and spent most of the month on sick leave. Resting didn't seem to help - if anything I felt worse! The mornings seemed to be the worst - I'd wake up feeing groggy and found it very hard to get out of bed. I noticed my neck felt increasingly sore and stiff too, and felt kind of drunk a lot of the day.

I've seen my doctor regularly since August and have looked into the following:

• Blood tests - I've done comprehensive blood tests showing nothing unusual
• Blood pressure - normal
• Covid - as far as I know I've never caught this, and have done fairly regular tests
• CT scan - I did a head CT scan which showed nothing unusual
• Eye tests - I've seen my optician twice for eye tests and he's certain my prescription is ok and eyes are healthy.
• Sleep disorders - I did an overnight sleep study which showed no issues - ruling out things like sleep apnoea and disrupted sleep
• Anxiety/Stress - for sure this could have contributed, but I'm not particularly affected by anxiety and things were relatively calm for me at the end of the year when my symptoms were worst.
• Physiotherapist - checked my neck and thought I had a very tense neck and suggested I do neck stretches

My doctor agreed that neck stretches were a good idea, and also prescribed me Amitryptyline for the tension heaache and Sumatriptan for the migraine-style headaches. I had already tried aspirin, paracetomol and ibuprofen with no effect. I took the Amitryptyline for 3 weeks but this had no effect on the tension headache so I stopped it. And I tried the Sumatriptan when a migraine started coming on - but this didn't seem to help either. I was doing the neck stretches every day too but again didn't feel any benefit.

My doctor was supportive and really tried to get to the bottom of things, but ultimately she said she there wasn't much more she could do and referred me to a neurologist. Reading other stories on here, I was cautious about how much a neurologist could really help so I tried a few things myself first:

• Vitamin D - I started taking daily supplements
• Mould - I cleaned (relatively small amounts of) black mould in my bathroom and set up a dehumidifier and HEPA air purifier in the house
• Carbon Monoxide - bought a much more sensitive CO detector, sensitive to 10PPM - this found no issues, but I realised that if I had been getting poisoned by low levels of CO, my old detector wouldn't have been sensitive enough to show this (most alarms only trigger at 50PPM which is above the level that can cause problems over long periods)
• Solvents - I moved anything that could have been releasing solvents in the house out into the garage and into sealed boxes. I found a strong smell coming from a part-used pack of 2 part wood filler containing Styrene which I'd been storing in a cupboard under the stairs, and which ventilates under the floor boards throughout the house.
• Natural gas leak - I bought a gas 'sniffer' and found a low level leak by the gas meter - the gas fitter came round but told me the leak was 'within limits'. It was still noticeable up close though and as with the Styrene, this cupboard ventilates through the house. Natural gas itself isn't poisonous, but can cause hypoxia-type symptoms if it builds up to a high level over time. The gas fitter fixed the leak.
• Checked out my posture in the mirror and now am certain I have fairly pronounced 'forward neck' posture - I started doing daily neck tucks (these hadn't been suggested by the physio), consciously try to improve my posture through the day, and bought a Tempur posture pillow.
• Tried to reduce my stress levels at work, not working over my normal hours, taking breaks and trying not to take on too much.

Since doing the above over the last 2 weeks I've been feeling noticeably better. I'm waking up feeling genuinely fresh, not getting headaches and not feeling spaced out. So what helped? Maybe there was something environmental affecting me at home? I'd definitely recommend ruling this out and improving ventilation at home - as even low levels of CO, mould, solvents, natural gas etc can have a big impact over time, especially with increased time WFH nowadays. Low level styrene exposure seems to be particularly dangerous and I'm kicking myself for leaving this in the house. I also think my poor posture and neck strain could well have contributed - these do seem linked to the groggy early morning sensation and might explain why all the extra sleep I got in December didn't help. I think the Tempur pillow has helped. And although I don't feel like stress was the root cause of this, I'm certain reducing my stress levels is helping too. Or of course, maybe none of the above is related and it's just by chance I'm now feeling better - who knows??

I'm now planning to focus on improving my posture and reducing neck strain - with regular physio sessions due to start from next week. If I feel symptoms coming back then my next step will be to see the neurologist, but for now I'm hopeful things are heading in the right direction.

Sorry this has been a bit of a ramble. I know there are many possible causes beyond what I've looked into - I think part of the reason why these kind of symptoms are so hard to fix is that they fall across multiple specialisms and it can be easy to go down a rabbit hole. Good luck to all of you facing similar symptoms and I hope you find a way to feel better soon.

Chris

I am scrolling through this in literal tears because it is exactly what I have been feeling since October, from what it seems. I am 30 and I don't understand what is happening. I haven't felt "smart" since Halloween 2021 it seems, to put a marker of when I can remember a definite shift of things. I am extremely forgetful now at work other than more social topics, my memory pretty much goes the past 3 days and that's all, so weekends screw me over. I have extreme fatigue even in the morning and can feel pain like I've walked at a theme park all day in my leg as soon as I get out of bed. The brain fog is the worst, I feel like I can't concentrate at all on conversation, but TV is easier to pay attention to. Not sure how much I'm actually following a story in a show/movie.

There are random times where I'll feel I've "woken up" and become aware again, even with the memory that I was functioning and technically aware before. It's like I'm remembering a different person when this happens, but at the same time I know I'm not because I do have a couple random memories.

As for mentions of the headaches on this thread, it is such a comfort to see other people talking about what I call my "shrink wrap"-feeling headaches too.

I have other neurological issues so I am really really scared about this. I have my annual appointment next week where I will ask about everything I have been feeling. I don't care if I throw my doc for a loop at this point I just want this all to stop and to at least be me again. I want to feel like I'm smart again and to have my sharp (or at least better than others') memory back. I'll take regular depression or normal anxiety as long as I can still feel like myself and not like I'm losing my mind.

I know this is an old thread, but I wanted to reply because I (Female, 24) suffered from the same symptoms and figured out what was causing the problem. Note: I do not have a diagnosis (only my own suspicions). My symptoms were a sudden-onset situation (like a switch was flicked) one evening when I was in a crowd. I went from totally normal (albeit I had just been through a breakup and am in my masters working 16h days) to confused, dizzy, dissociated with very blurry vision. I totally lost my ability to perceive time, and it felt like I was watching the whole world through water or glass. I was just trying to get through the day every day for about two months, and had CT scans, MRIs, blood work - all showing nothing except a B12 deficiency. I questioned how I would be able to continue living like this and had very dark moments. I had the uncanny feeling that everything around me wasn't real, because it felt so distant, and I wondered how long it would be before I gave in to this belief and lost my grip on reality. I felt like I was just holding on. I was so frustrated because my symptoms were so acute that I felt that they had to be caused by something in my environment, but all my doctors could think of was migraine (I've never had one) or anxiety/depression (I probably had mild anxiety, but am certain I'm not depressed). I was told to try meditation... When all the tests were inconclusive I started seeing a psychologist, but she quickly assured me that there was "nothing wrong with me" and dropped me soon thereafter. I developed severe anxiety as a secondary disorder, especially since my symptoms would spontaneously get worse, which led to borderline panic for me. The only time I felt normal was right after I woke up in the morning, but my symptoms would quickly return. I had strange headaches for a while that got worse when the symptoms were worse.

Fast forward, I went on a one-month climbing trip to Argentina, and my symptoms disappeared entirely. I racked my brain trying to figure out what it was, until one morning I did some work on my laptop, and my symptoms returned a few hours later.

I did some research and I realized that my symptoms lined up with a vestibular disorder (there are many kinds), especially because I have experienced dizziness in the past from crowds, visual overstimulation, and fluorescent lighting. The symptoms would get worse when I looked at complicated visual scenes that required concentration.

What worked for me: minimizing computer time, turning down the brightness to an absolute minimum, getting blue light glasses. I also needed glasses, so I would recommend getting your vision checked as well. There are migraine glasses/screen covers that would probably help too. It turns out that the flickering of screens can cause neurological symptoms, and something this simple worked for me (someone who has no choice but to spend huge amounts of time in front of a screen). I usually notice the symptoms a few hours or up to a day later.

I really hope this helps some people in this thread - please don't despair - because I remember how I felt when I visited this place. I promise it gets better. -I

Sorry to see what you had experience Hopefully by now all is better. I have been experiencing this lately. Lots of doctors and tests but I believe it is due to my mattress. I realized that my memory foam is sloping at least 1" and for months my neck and head are trying to adjust the slope that it affects my balance and experiencing some neuro issues. I changed my bed and every day, it's been getting better. I had anxiety and stress issues too due to physical and emotional issues due to to this but once I found out and been getting better, my stress is getting less.

Feel better.

I have experienced many of your symptoms - including the fatigue and brain fog. Not sure if this will help but changing my diet made a massive impact . Most of the time my head is clear - but the memory part of it is still pretty sporadic - I have bad days, good days and excellent days occasionally that give me hope that when I figure out the cause my brain will come back. I am still convinced there is an underlying cause to the memory part of it and that it is not dementia of some sort.

Foods we are intolerant to cause inflammation in the body and my theory is that some of us have a less than stellar blood/brain barrier and that we get a larger load of inflammatory compounds pass through, causing inflammation in our brain, causing memory issues. The only evidence I have to support this is if I do fasts - around 24 hours - my head is clearer and my memory is much better. But clearly I can't give up eating so that is not sustainable.

Also - vitamins - FROM FOOD - not the fake vitamins you buy in a bottle at supermarkets and health food stores that are synthesised and slightly different in shape from the vitamin they are mimicking. They may be an exact match chemically but I believe they work slightly differently and are not as effective.

ALSO - and I believe this was a MAJOR FACTOR in my 'brain fog, cloudy thinking, time passing weirdly, floating through life, unable to recall conversations I literally had minutes ago' symptoms is CITRIC ACID. ' It is in many things. I suspect it was a major contributing factor to the brain fog. I even found an medical article online supporting the possibility this was the cause. I can't say for sure as I have cut many things out of my diet.

Most people when they think citric acid they think oranges and lemons.

The citric acid in your food/drinks and used to make vitamin C is NOT the same as citric acid in tomatoes lemons oranges etc. It is synthesized from glucose and aspergillus mould which apart from being disgusting, is in just about everything because it is a wonderful preservative. It is used in soda, coke etc, it is used in pre-made pasta sauces and any frozen dish with tomatoes in it, it is in just about every flavour sauce and nearly everything that comes in a jar. It is additive number 330 but also comes in other forms such as acetic acid - also made by the same process.

I highly recommend anyone experience these symptoms make a plan for at least four days, and preferably longer, and go citric acid free. It might mean preparing in advance so you have enough food not to give up. If this is the cause, or part of the cause, you should feel a mild difference within 24-48 hours and it will keep improving if you do it longer.

And if you can bare it I highly recommend you go 100% natural while you are doing it ... by this I mean no chemical, preservatives, so nothing pre-made. I would also cut dairy if you can bare it (there are chemicals in various steps of the making of dairy from cleaning agents used to clean the machines to the stuff they make vegetarian rennet out of.

Basically eat just loads of fruit and vegetables, fresh or frozen - not canned they often have additives. If you eat meat, eat it as fresh as possible. also stick to cold pressed olive oil to avoid antifoaming agents.

It is very hard to do but I would be very surprised if someone tried this and did not feel any benefits, and it is worth a few days or a week of your life if you get your life back. I did!!

Wow - just realised how long this is - when I saw how many other people were posting on this thread I thought if I can say or suggest something that helped even one person, it would be worth it, because I still remember how debilitating it was, and how it affected every aspect of my life from my social life (due to embarrassment) my work life due to not being able to recall details needed etc and so on.

Regards,

Leesa

Im pretty sure its from the 5G towers they are putting up everywhere! i live where there arent any and went to visit my sister in Oklahoma City they just launched the 5G everywhere there and i had to leave early. brain fog, memory loss, body aches. They are slowly poisoning us with radiation.

im not a conspiracy theorist or anything i just know how i felt the 6 days i was there. ive bewn home for 3 days now and am just starting to get back to normal.

hi there i feel like this over 10 mths on prednisone do you have a full ess in your head and buzzing

I feel like in finding this forum, I've found hope that I'm not the only person that's going through this.

Strangely enough, my case came in 2 separate episodes, and I'm in the middle of the second one now.

My symptoms are as follows:

• trouble concentrating
• trouble conversating and finding things to say (and conversations are well-known as my strong suit)
• poor short-term and long-term memory (if i put a cup down somewhere and walk away, I'll forget where i put it in only a matter of 10-30 seconds
• difficulty retaining information
• difficulty learning new information
• a spacey kind of feeling, like I'm high when i try to look around or turn my head. things feel dream-like
• difficulty being creative (and my career is in the arts)
• insomnia
• intense anxiety and depression seem to have come as a result. anxiety because when these symptoms happening left me flabberghasted and lost and i couldn't function normally. depression came as i had to withdraw from the things i loved because i could no longer do them

But do you know what's weird?

spontaneously one day, as soon as the onset happened, it evaporated. i could think clearly, i could focus, i could learn new information so easily, and arguably better than i ever could, even before these symptoms. i was funnier than i ever was. it was like i was on top of the world. i excelled in my job upon my return, and it was amazing for three months.

then it all came creeping back in. after those three months of glory, every single one of my symptoms returned.

and the first time this happened, it was so strange. i was in the middle of hanging out with friends, and it just suddenly hit me. couldn't keep a train of thought. couldn't explain myself. couldn't focus.

i don't know what this is. and i don't know how it went away as quick as it grabbed hold of me. doctors say its anxiety, and im at a 30 day wellness retreat for anxiety and depression now. i became more optimistic while here. im getting on new meds, this time wellbutrin. i had only been on lexapro for 5 weeks when i had the miracle of returning to my former self the first time. honestly the sudden transformation from utterly debilitated to healed and brilliant again left my mother thinking i must have been doing dr*gs.

this new onset has kept me from being my best me in my relationship. it has kept me from enjoying time with friends because i cant even keep a conversation going. it sucks. even watching tv and tiktoks is a challenge. i know. i know how you feel.

I'm posting this to say

1. you're not alone
2. you're not crazy
3. i don't know what this is either, and that's okay. we're working on it
4. i've seen some subtle improvements in myself, even in this second episode

I've started watching my diet, exercising at least 30 mins each day (even if thats just a walk), got on new meds i HOPE will work, and most importantly--i started to be as optimistic as possible. I keep saying to myself that this is going to get better. i saw it happen before, and it can happen again. do i know exactly how? no. i wish i did. i wish i had the answer you want. but i don't. the best i can say is to, as corny as it sounds, be positive. fix the ruminating thoughts, the concern it will never relieve, by replacing them with positive ones. i've been impressed to find that such a small change, which honestly took me months to start doing well, has left me feeling more hopeful and happier each day.

i have always had some anxiety, but never this debilitating. never. is that what it is? honestly i don't feel like the human brain could be this toxic upon itself. i want to think "this isn't my fault. something happened and i don't know what."

i've gone for MRI's, blood tests, heart ultrasounds, everything. they say im healthy.

it's like i have to believe i can fix this with talk therapy, CBT, the supplements i take, meds, exercise, journaling, meditation, positive self-talk.

if it could cure anxiety and depression, i'm doing it.

i don't want to give up hope. i almost did. i almost let myself let it all go. but i can't. this life can't be for nothing. and neither can yours. all we can do is try. try to get better, try to work through it, try to be positive and treat this like depression and anxiety. i don't see a reason even WHY this happened. i don't. there's no SOURCE of my sudden anxiety and depression. but im still trying to fix things I'm trying. it's all we can do. it's all you can do. work with me.

Just try.

Why don’t you talk to a psychiatrist and get yourself diagnosed. It will surely help you go through. I’d also suggest you take some yoga and meditation sessions.

Around December I (M18) was diagnosed with a rare condition called Guillain-Barré syndrome (GBS). It’s hard to explain but I caught mono and my body attacked my nervous system instead of the infection. GBS left me almost paralyzed for months. I spent a month and a half in the hospital, through the holidays. My family visited as much as they could but due to Covid there were restrictions at the hospital. So I spent Christmas paralyzed and alone for most of the day. After the hell I endured in the hospital I was transferred to an in patient rehab facility across the street from the hospital where I met the two most wonderful people, my physical therapists, they saved my life if it weren’t for the kindness they showed I don’t think I would be here today. Towards the end of my stay I started feeling off, getting intense migraines, and feeling mentally off all the time but I didn’t care I wanted to kick gbs’s ass. After another month and a half I was finally aloud to go home. After 2 months of hard work I was able to walk without a walker or cane and i could start driving again. My triumph didn’t last long because once my body healed my mind started to deteriorate. I feel exhausted all the time, my brain is foggy, I feel like I’m just going through the motions of life and not actually living, no matter how hard I try to stay busy when I lay down at the end of the day I just feel like it flew by and I feel like everything I did was useless.

Now I’m anxious about everything. My hands are weird shades, my knuckles have tiny red dots on them, when i shower my feet and legs go bright red, not the typical shower burn it’s like a rash but my skin is smooth, just red. I go to the doctor and they say it’s nothing to worry about. I saw my neurologist and told her about my mental issues and she thinks I have depersonalization disorder but she told me to see a psychiatrist because it’s not her field. I can’t get a psychiatrist because there’s months wait lists on all of them.

One unique thing for me is that I feel terrible all day and every day around 10 pm my symptoms ease and I can function somewhat normally. But I wake up the next morning and it’s back to the s**t show. It’s good to see I’m not alone tho. We got this!