• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Constant Brain fog/disconnected feeling

Messages
59
I was wondering if anyone has had similar symptoms. All of this came on 3 years ago and I really haven't spoken to anyone who experiences the same thing.

I have this constant brain fog 24/7 that never goes away. I know people say they have fog, but not constantly. It is all day every day. I feel like my brain isn't my own. It is more perceptions. My brain just doesn't seem to be able to process things. I feel toxic.

I can talk and everything, but it feels like I am aware of reality but I am not in it. Everything sort of feels like a dream like state and I am not actually living the moments. Everything just looks off, and indoor lighting is the worst. It doesn't look normal to me. It looks really bright and like my brain can't process it to just look normal in a room. Dimmed lights also look weird to me.

I have been to numerous doctors and have been diagnosed with lyme and mold. My most recent doctor found high inflammation in my body and mold according to Shoemaker labs, and he doesn't think I have lyme. Half his practice are lyme patients, so it isn't that he is one of those who doesn't believe in lyme disease, he just simply doesn't think it is my main problem due to the mold labs.

I have never had anyone describe their brain symptoms the way I do, and sometimes I really question if I have something that hasn't yet been discovered or some rare disease no one can figure out.

I am out off mold and taking binders but I don't remotely feel any better, and most of the time meds just make me feel worse. I end up tingling way more and the same happens with supplements. Supplements have made me run a fever.

I really don't know what is wrong and I am losing hope. I just feel like no one can fix me and it is so depressing. I wonder if anyone else has had a similar experience?
 

Old Bones

Senior Member
Messages
808
I have this constant brain fog 24/7 that never goes away. . . . It is all day every day. I feel like my brain isn't my own.

I can talk and everything, but it feels like I am aware of reality but I am not in it. Everything sort of feels like a dream like state and I am not actually living the moments. Everything just looks off, and indoor lighting is the worst. It doesn't look normal to me. It looks really bright and like my brain can't process it to just look normal in a room.

@skyfall I'm so sorry to hear you have constant brain fog. From your description, I may have experienced something similar.

For approximately twenty-five years, I felt disconnected from reality -- that I was merely going through the motions of my life on "auto-pilot", but not really in the moment. I found it particularly disconcerting in social settings. I was aware of being with people, and somehow I must have unconsciously responded to their questions and expressed myself adequately so that my mental absence wasn't noticed. But invariably I'd arrive home and end up processing the entire get-together like a re-run, experiencing it more after-the-fact than in-the-moment. I often wondered if my re-play was accurate, and frequently felt the need to ask my husband if I had behaved appropriately. Apparently I always had, which was some comfort.

Also like you, my visual perceptions are "off". All of the lights in our home are on dimmers. If it were entirely up to me, they'd be turned down so low my husband would be stumbling in the dark. He can't believe how well I see in low-light conditions, and I can't understand why everyone else needs things so bright.

In my case, starting treatment for hypothyroidism improved this particular type of brain fog. I'm much more aware in the moment, and find it easier to formulate and express my thoughts. So, perhaps this is something you could consider, if you haven't already done so. Here's a link to an article about thyroid brain fog which mentions people feeling detached.

https://theinvisiblehypothyroidism.com/2016/04/29/thyroid-brain-fog/

Unfortunately, although thyroid medication improved my "disconnect", it does nothing for my other cognitive and memory/learning problems.

Please don't lose hope. I saw a recent interview with Dr. Ron Davis (ME researcher) who said more has been learned about the disease in the past year than during the previous 30 years. For me (ill for almost that entire 30 years), this is very encouraging news.
 
Last edited:

Daffodil

Senior Member
Messages
5,875
@skyfall I may have communicated with you before..your name sounds familiar

my fog was 24/7 for 23 years, driving me to a suicidal state almost everyday, especially in later stage of my illness.

the fog is coming from ammonia and other neurotoxins originating possibly in the gut.

eventually, antibiotics improved it but some is still there.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I believe what you're describing is derealisation and/or depersonalisation. These two symptoms fall under the general umbrella of dissociation. It is very common with psychiatric conditions. I have no doubt it is possible neurological conditions too. I have suffered from quite significant derealisation - it feels like you're looking at the world through a fish bowl, and is one of my most hated symptoms. I have come across two hypotheses about the possible pathophysiology, which are not mutually exclusive:

1. Low grade brain inflammation. More specifically, microglial activation.

2. Sympathetic nervous system hyperactivity or sensitivity. The hypothesis I have seen suggests that derealisation/depersonalisation is a protective mechanism during a period of significant environmental stress. This is usually couched in terms of psychological stress, but I see no reason to restrict it to psychology. This theory links nicely with the dauer-state hypothesis of ME.

Obviously these are just hypotheses. My derealisation significantly predates my ME, but I suspect the two could share a common cause.
 
Last edited:

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
@skyfall

I am so sorry that you have that, ALL of the time.

I do have it sometimes, which feels very uncomfortable and strange,

and I feel I cannot explain it to anyone.

SO I thank you for putting it into words, and sharing.


I don't have it ALL of the time, like you described.


Does sound neurological, but I have no idea really.

I hope yours somehow gets better. It would definitely be very hard
to hold onto hope, and to avoid feeling more depressed and hopeless and alone.

But I hope you can try to.
We understand at least some of what you are going through.

Shoshana
 

aquariusgirl

Senior Member
Messages
1,732
Yeah had this ....what helped?


Alinia..,,a parasite drug ..,reduced brain inflammation..nope don't know what infection it targeted. I took it cos my practitioner said Michael Paine was having success in treatment resistant patients. Stopped working after a while.

This drug is being repurposed for ovarian cancer & other stuff ...

2) 150mg ofzinc a day plus 1/200 mg of B6
Zinc was low but in range on tests ...I don't think the tests can be trusted.
( \KPU or something similar?)

3) low inflammatory diet ...low carb low sugar

4) Mitolipo copper ( I wouldn't touch any other form of copper). I use it sparingly..


5) still can't crack the lack of glucose to the brain. Struggle w/Ketogenic diet

6) reduce oxolates ( tying low oxolates group on facebook)

Some of the above are controversial & should not be seen as medical advice.

Basically:: reduce brain inflammation
Support superoxide Dismutase
Find a fuel system that works for the brain

Still a work in progress
 

J.G

Senior Member
Messages
162
I can talk and everything, but it feels like I am aware of reality but I am not in it. Everything sort of feels like a dream like state and I am not actually living the moments.

Have you been tested for anti-NMDA autoantibodies? Derealization, brain fog and general neurological issues are among the primary symptoms. These antibodies were discovered within the last 'long decade' or so and may not be on your doctor's radar.
 
Messages
27
Location
New Zealand
I was wondering if anyone has had similar symptoms. All of this came on 3 years ago and I really haven't spoken to anyone who experiences the same thing.

I have this constant brain fog 24/7 that never goes away. I know people say they have fog, but not constantly. It is all day every day. I feel like my brain isn't my own. It is more perceptions. My brain just doesn't seem to be able to process things. I feel toxic.

I can talk and everything, but it feels like I am aware of reality but I am not in it. Everything sort of feels like a dream like state and I am not actually living the moments. Everything just looks off, and indoor lighting is the worst. It doesn't look normal to me. It looks really bright and like my brain can't process it to just look normal in a room. Dimmed lights also look weird to me.

Yes, I think the kind of thing you are describing is what I have has consistently since the symptoms of my CFS began about a year and a half ago.

I have described it as feeling spaced out all the time, just not really there and feel i am almost in a movie sometimes. It is no fun. Is it part of CFS do you think?
 

Timaca

Senior Member
Messages
792
Hi skyfall~ I'm sorry for your health issues. I understand. Antiviral medication has helped me. And, surprisingly enough, an elimination diet. I had NO idea that food was an issue, but I figured I didn't have anything to lose so I went on a pretty strict elimination diet and one of the first things that got a lot better was my brain fog. This took about 3 1/2 weeks on the diet to improve.

It seems in me, that I have to avoid all animal products, all grains except rice, nuts and seeds and I don't eat a lot of high histamine foods (and possibly high benzoate foods....still testing that). If you want to see what happened to me with 1 tablespoon of dry oats you can read my blog post.

Wishing you answers,
 
Messages
1
I was wondering if anyone has had similar symptoms. All of this came on 3 years ago and I really haven't spoken to anyone who experiences the same thing.

I have this constant brain fog 24/7 that never goes away. I know people say they have fog, but not constantly. It is all day every day. I feel like my brain isn't my own. It is more perceptions. My brain just doesn't seem to be able to process things. I feel toxic.

I can talk and everything, but it feels like I am aware of reality but I am not in it. Everything sort of feels like a dream like state and I am not actually living the moments. Everything just looks off, and indoor lighting is the worst. It doesn't look normal to me. It looks really bright and like my brain can't process it to just look normal in a room. Dimmed lights also look weird to me.

I have been to numerous doctors and have been diagnosed with lyme and mold. My most recent doctor found high inflammation in my body and mold according to Shoemaker labs, and he doesn't think I have lyme. Half his practice are lyme patients, so it isn't that he is one of those who doesn't believe in lyme disease, he just simply doesn't think it is my main problem due to the mold labs.

I have never had anyone describe their brain symptoms the way I do, and sometimes I really question if I have something that hasn't yet been discovered or some rare disease no one can figure out.

I am out off mold and taking binders but I don't remotely feel any better, and most of the time meds just make me feel worse. I end up tingling way more and the same happens with supplements. Supplements have made me run a fever.

I really don't know what is wrong and I am losing hope. I just feel like no one can fix me and it is so depressing. I wonder if anyone else has had a similar experience?
Are you sure you are 100% out of exposure. I cross contaminated meaning I brought my stiff from my moldy home and brought it into another house. I had a similar experience as you but worse o feel. Because I had emotional numbing like really really bad. Still do but I'm now in a clean environment where hopefully I'll be able to heal. 2 yrs of feeling this way.

2 homes later. Treatment didn't work for me either but I was still in a environment with low mold. And mild in my car which I couldn't even see.
 
Last edited by a moderator: