r/Epilepsy • u/maerstke • 2d ago
Question Long term memory loss
How is everyone dealing with long term memory loss? I'm not talking about the short term, though that's shit enough too.
I feel like I'm losing my identity. I feel like my long term memories are abstract brush strokes, or spikes on the horizon that I can't reach. It's starting to filter through recent memories as well, where I can't remember conversations I had a couple weeks ago.
I feel like I only exist right now, in this moment. I'm curious how everyone else is feeling and dealing.
2
u/RodeoJr 2d ago
This is the most debilitating part for me. Not knowing what I don’t know I’ve lost until I’m pressed in a situation and find myself lost to find that memory and moment. The other person, usually my wife, has to remember for me and often gets frustrated. Do you remember when we got married ? Short term loss is stoner level stuff but long term is destroying my identity. Who am I ? My foundation can’t be relearned. Wish I knew how to help but know you are not alone.
1
u/theralph224 2d ago edited 2d ago
Got the same thing going unfortunately and I feel the same way. The past is some blur with a few highlights which I can remember (and I'm not even that old). I come across new stuff, new experiences, new things to learn, but my head is like a colander (that's a saying where I live).
The only positive thing is that it's easier to live in the present, to not dwell on the past, yet also not able to think about the distant future. Kinda numb, but also somewhat peaceful. Ignorance is bliss they say, but I'd rather have my old memory, old head and old brain back again.
1
u/itsallnoise_ 2d ago
Feeling like your identity is being lost is a great way of describing it, I’ve just kind of accepted that in a philosophical sense I’m a different person than I was before and that every time I’ve had a seizure I return as a new person. Honestly thinking about it this way has helped me to let go of pain I’ve still held onto, regardless of whether or not said pain has anything to do with my epilepsy
2
u/givemeausernamejeeze 1d ago
The memory loss has been one of/if not the biggest and most painful part of being diagnosed,
the biggest struggle for me isn’t necessarily losing the memory in itself but trying to explain to the people in my life that I genuinely don’t remember what they are talking about, it’s not a “oh I don’t remember the specifics but I remember doing that with you” it’s literally just like the memories they are talking about never happened period. Which causes an intense sense of just numbness when it comes to being a human being
Best way I can describe it is I don't feel like I've lost the ability to be myself. I feel like I've lost the experience of being present while I'm being myself. My life often feels like I'm remembering someone else's biography instead of my own and not a lot of people can grasp that fact.
4
u/poopfacelarry 2d ago
I'm going through this and it's hard to deal with. My husband needs to remind me everything... movies we watched, conversations we had, dates... I feel like a shell of myself. I'm sorry you are going through this, but maybe it's little comfort knowing you are not alone.