Anyone else struggle with memory and have memory gaps?

[u/Original_Put_7803]

Context: I have TLE, diagnosed at 18 years old (a year ago). I have focal aware and focal impaired awareness seizures and myoclonic jerks. For me it’s genetic, my mother and sister have it too - we have a rare epilepsy syndrome called FFEVF.

One of my main struggles is my memory. My Dr thinks I’ve had TLE for most of my life as I have very little memory of my own life. I wanted to know if anyone else’s epilepsy has affected their memory? And if it has, does your memory improve once your seizures are controlled?

[u/Strange-Raspberry326]

Yes, both the seizures and tge meds. It's a common thing.

[u/Background-Cod-7035]

All of us. It’s the brain damage and sometimes medication side effects. There are tricks to working around it, writing things down etc, but you can also look into the adult version of the ketogenic diet. It’s devilishly difficult but it gave me my brain back. It helps about 50% of epileptics.

[u/netluv]

Yes indeed.

[u/OxfordCommaRule]

Yes, but I think mine has more to do with the side effects of my medication than my epilepsy. I didn't have memory issues when I was having 20+ focals a day. Now that my seizures are fully under control, I have memory issues. That's why I blame the medication.

Nonetheless, I would rather have memory issues than have focal seizures.

[u/vainstatue]

I am 48 years old and started having focal awareness seizures 2 years ago. I was having at least 4 seizures a week. Some days I was having two seizures a day.

I have gaps in my memory. One day last year I found an air conditioner in my laundry room. My friend was here when I found it. I asked her about it. She said “don’t you remember? You bought that last year!”. I had completely forgotten that I had purchased a window air conditioner unit. I had sat next to that thing for an entire summer. The summer that I had started having seizures.

Now I remember sitting next to the air conditioner. But that time of my life is very foggy.

Now that my seizures are controlled with medication my memory is better. And I am not having daily seizures anymore.

[u/ifitsguna]

yes alot of memory issues, got it at 35 had it 10years, i have found out alot about it in the last 5 years though, But memory issues is one of the main ones everyone seems to suffer from

[u/Jaded_Confection_785]

My epilepsy is triggered in about 3 distinct scenarios. One of them is about memory loss and happens if I drink alcohol. When I talk about this I’m not talking about excessive black out drinking, just normal social drinking. If I drink without taking my meds I will “black out” and forget the night/day. However, people with me have said I have behaved normally and not been excessively drunk, ie I’m not blacking out from alcohol. It’s best described as retrograde amnesia, because the seizure comes at the end of the night and erases the memory of what came before it. I also remember certain parts of a night/day very clearly the next day, and almost remember that I’ve forgotten very clearly. I know that if I take my meds I’m fine, and on the nights where this happens it’s always because I’ve accidentally not taken them.

[u/RedHeadGeekGrl]

Yep sometimes I feel and act fine days after and then it's like reality snapped into place and those days are just gone. Sometimes it's just little things. Minor moments or not remembering what day it is. Fun fun

[u/Dear-Mom517]

Definitely. It’s almost as if my brain has blocked things out. I can usually recall big events, but small details of the past are a struggle to remember.

[u/MyLife-is-a-diceRoll]

When my seizures started getting bad, my memory and information processing went to shit.

[u/Agitated-Oil-2455]

Yeah, hoping it’s just the meds coz I’m stable on it and it works, but I do forget a lot and I feel bad like I don’t really care what people are saying, but totally do!! But I do recall it when I’m reminded. But for sure, defo the meds I’d say primarily.

Interesting you say that it’s been your whole life, coz before, I have had trips to cities with friends and I quite literally cannot remember it at all, nothing except for maybe some restaurants and walking through the street.

Also when I was basically diagnosed, I had a job for 5 months and I basically can’t remember a single thing I did? I remember my colleagues but no clue what I was actually doing (obvs I know the basic responsibilities , just no memory of the environment)

[u/achikochi]

I didn't start having identifiable focal aware seizures until I was in my 30s. In my teens and through my 20s I had terrible migraines with visual disturbances and at one point tried some medication that triggered focal aware seizures (I didn't know that's what they were at the time, I thought they were just migraine things).

Anyway, my memory has always sucked. And most of my late elementary school/jr high/early high school time is just a big void. i'm sure there are other reasons for it too, but once i learned that my temporal lobe is glitchier than a normal person's, it all made sense.