Memory Loss (blackouts)— literally can’t remember some periods of time

Quote from the IACFS conference point in this matter.

I am soooo relieved somebody brought this up (specially an experienced Doctor) and I am willing to discuss this now.

By far the freakiest symptom and scariest one: the thing about this disease is those periods of time where I cannot account for or remember at all, Or those were I partially remember parts but not others (specially with great implications).

I remember I had file important paperwork and I have no clue the info I put down in there. I remember bits of pieces of me struggling with my birth date or name... Imagine the quality of the rest of the data I filled!!!

I remember in cases me driving and freaking out no idea where I was or how I got there. Or being suddenly with people feeling disoriented and having to act normal while my brain was trying to organize, who are these people, how did I get here, what just happened... and keeping your cool so you don't look completely insane while internally you freak out about the implications of what just happened and how is this even possible.

I never gave this symptom much thought in the analysis sense and try to figure out, since I have more brain issues than most, I put it down to that and just worried about the next symptom. They popped up faster than I could analyze, or keep up with. This was during my worst period. Was more noticeable as my husband joined in and tried to pay bills where the account info was all over the place.

The best way to explain it is like when a woman has a baby and you block out the hours of pain, you remember bit and pieces but we black out most of the worst parts. I wonder sometimes if is a body protective mechanism or a type of extreme brain fog.

All I know is I am soooo glad I don't have this anymore. Knock on WOOOOOD!!!!! My current one when I am tired is that people talk to me and for the life of me I cannot understand what they say (like they are talking in a different language). When tired, I am unable to process words into what they mean. I think that was found in my neurophsyeval.


"having to act normal while my brain was trying to organize, who are these people, how did I get here, what just happened... and keeping your cool so you don't look completely insane while internally you freak out"

I know that one only to well. The worst incident of that was one time when my brother-in-law came unexpectively to my door and I couldnt figure out who he was.

I think Ive became a bit of an expert at hiding the issues I have eg if you cant remember who someone is.. encourage them to do all the talking and hopefully sooner or later they will give some info so you know who they are. One can often bluff ones way throu, so appear normal.
Oh My i forgot about that one! I see somebody, I feel love or care, so I know I know this person and I feel I care for that person but I have no clue who it is!!!! Eventually I catch up while I have a generic conversation.
I had this alot with lyme and bartonella. It was a form of temporal lobe siezures brought out from the infection. Did not know the same happened with ME though..
At a gathering, my former husband came up, hugged me and asked how I was doing. I didn't know who he was.
You are not alone, lnester7. These memory issues are common in long term ME patients, though less common in new patients. I don't think its blackouts, I think its a problem both creating and accessing memories. Its a consequence of brain hypoperfusion, hypometabolism, and possibly brain inflammation.
I had this start early, during my 1st bout with this. Was in high school. In the middle of a test, I completely became disoriented. The class was half over but I did not remember any of the class, even entering the room. Couldn't figure out how the answers to the first half of the test got on my paper, or even if it was my handwriting!!!

This type of thing happened repeatedly. I'd be in a class and suddenly it was as if I'd been in a trance... didn't know where I was, morning or afternoon. etc. Not easy for a teenager to deal with on top of all the other symptoms.

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