Epilepsy Research UK
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Hi I have never posted in a forum but have just watched something that has upset me, I have had epilepsy since 17 now controlled no seizures for 6 years( fingers crossed) but I cannot remember my 2 children growing up as between the age of about 22 - 26 I had loads and had to try lots of different drugs for it, I can't remember them walking or me changing them or anything and it's awful do other people have this? I think I read on here someone can't remember school friends etc that's the same as me!


8 Replies

Hi Tracy,

I'm so sorry to hear that. I currently have a little boy who's 8 months old, so I know how precious these moment are. I never want to forget them. My epilepsy was at its worst when I was a teenager and my memory from this time is very poor. I can't remember a lot of the thing I did with my friends and I've had the experience several times of watching films that I thought I'd not seen before, only for something near the end to remind me that actually I saw it during that period! I don't spend much time with my school friends but it can be very upsetting when I am with them and they are talking about something we did that I don't remember at all. Similarly, things like family holidays from this time...

Unfortunately I don't think we'll ever get our memories back, we just have to rely on other people and photos.

All the best,



Yes that was me tracytace it's the worst feeling ever I'm looking at pictures but obviously I'm not as lucky as my children where you can take selfies of each other I have no pictures of friends to try and jog my memories of who they were, I don't know if that was the same for you? Family pictures I know who they are but not what we were doing or where we were. Why does this medication mess with our heads I now refuse to try yet another medication even though my fits aren't controlled I have been on to many. Often wonder if there is anything else out there for us to try fed up of medication that only half works and takes away such important memories

Sorry for going on everyone

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I know what you mean I have hardly any pics. I have a friend from 25 years ago and she tells me things we did and it could have been someone else for all I know as I have no memory of it! I think it's the meds and the fits that cause the memory loss so perhaps you should persevere because seizures are vile as you know.

Good luck.


I'm not sure it's all to do with epilepsy or just getting older. There's only so much room in your head is my idea & my epilepsy isn't bad, but I'm in my mid 40's & had a breakdown last year. I had a perfect memory up until last year, but then my brain just blew with the stress. Don't be too hard on yourself, you know you love your children, mine all e me what their first words were, other memories etc. Sometimes I know, sometimes I don't. I remember more with the first than the second, but that's normal according to my friends as by number 2 your much busier xx


Me too,my memory is exactly the same.I've had epilepsy for 24yrs,names,face.as I get older my childhood comes back to me but my short term memory is where I can't remember anything from yesterday to a few mth ago.it drags you down sometimes.


Thanks for replies, I'm glad it's not just me, not in a horrible way of course lol


Me too. It is painful. Now my 2 girls are in their twenties, and I'm no longer a large part of their lives, and my memories of them growing up has gone by about 80%. So although I have been a 'mother' I can't remember much. I've finally got to the stage where I've realized AED doesn't do me any good, I've tried many types over a period of 30 years and have observed how they do affect memory and clear thinking. The seizures have never been tamed. So 5 years ago I stopped every drug and request guidance through prayer. Use meditation and deep relaxation. Also, I keep active with yoga and have fun dancing weekly. The seizures haven't changed their routine, but I feel so pleased and safe with this decision. My thinking is clear, moods more cheerful and my vitality has increased. I am now happy with life. I understand this is not the path for everyone, but I just want to tell a positive story.


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I think it's great that you have decided to do this after all it's your body and your life 😄😄👍🏻


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