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A MyEpilepsyTeam Member asked a question 💭
Lafayette, IN

My life has completely changed and hasn't been the same after I had my first seizure, obviously, but sometimes I feel like my memory has worsened. I had mentioned it to my mom but she didn't really think of it as a problem she saw it more like I'm trying to convince myself of something that's isn't true and that it's all in my head. To be honest it makes me sad because I try to think back at memories when I was in elementary school and they're not very clear. I guess it's normal for one to… read more

June 25, 2017
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Answer Summary

Members opened up about the profound and often misunderstood impact of seizures on memory, with many describing a frustrating pattern of... Read more

Members opened up about the profound and often misunderstood impact of seizures on memory, with many describing a frustrating pattern of forgetting recent events, names, and conversations while retaining vivid fragments of childhood or distant memories. Several members shared practical coping strategies that have helped them manage daily life, including carrying small notebooks or using phone calendars to track tasks and appointments, taking photographs to create visual reminders, setting alarms for medications and responsibilities, and organizing belongings in consistent places to reduce searching. A recurring theme was the emotional toll of feeling dismissed by family members who don't recognize memory loss as real, the fear of progressive decline, and the loneliness of being misunderstood, met with powerful encouragement from others who validated these experiences as common, legitimate effects of both seizures and medications rather than personal failings.

A MyEpilepsyTeam Member

I started getting seizures about 6 years ago, and it seems like my memory gets worse every time. What's wierd is that i can remember something from 30 years ago, but I can't remember if I took my meds 3 hours ago. Or what I had for lunch but I will remember in a week or so.

March 30, 2020
A MyEpilepsyTeam Member

I just got home from vacation with some friends. One of them isn't a friend of mine thank God! I'm sometimes forgetful & asked a question to her. She screamed at me that I already asked the same one. I lost it & BAD words came flying out of my mouth!! My best friend told her that I have Epilepsy & not to act that way towards me. I was pissed!! I saw a tear running down her face after afterwards. 😪

August 25, 2019
A MyEpilepsyTeam Member

I've had many grand mal seizures over the years, and it feels like after each one I lose a little more memory.

I forget if I've already told someone something. I forget things I've been told. I have a terrible time coming up with words I want to use when speaking or writing/typing.
I also sometimes have trouble speaking or getting the words out correctly. It's embarrassing.

I'm sure all of the drugs I'm taking aren't helping this condition either.

February 20, 2018
A MyEpilepsyTeam Member

Hello everyone - I know this thread is about memory loss. I just wanted to add that my memory is worse after seizures. Some days I have multiple seizures and after that I feel like my memory has been wiped clean. But I am confident that slowly it comes back. And yes I have hit my head on the ground several times, which may also affect memory. But sometimes when I’m at home alone I just try to think back to my childhood and find a fragment of memory. If one appears then great! I’ve made a neural connection. So I just keep thinking back to something that happened in the past or something I did previously and trying to make more neural connections. I also play brain games online. These help with memory. And just keep rebuilding those connections like a puzzle.

February 20, 2018 (edited)
A MyEpilepsyTeam Member

Anyone who had any repetitive damage to the brain can lose usage. looked at professional sport players, military, any one a repetitive neurological disorder. or damages.

December 19, 2018

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