My life as I now know it

[Manda1986]

Hi my name is Amanda and I'm 31 years old. I have been having tonic-clonic seizures from the time I was 19. They have never been under control. I did get them from 5 to 8 times a month to 2 or 4 a month. I just had a bad one about 4 days ago now and its the first time I have ever had memory loss. Thing is I don't remember different chunks of my life. Like my 12 year old daughter I have no memory of her at all. Anything about myself, like favorite food, color and even my own birthday. When I came to after the seizure I lost the last 2 years of my life. It's 2018 and I thought it was 2016. I dont remember most people in my life friends family. My boyfriend of almost a year I have no idea who he is. People talk about things my daughter and all of have done like christmas or birthdays or any big event and be like remember? No I don't remember. This is by far the worst thing any person should ever have to endure in a life time, like my seizures were not bad enough!? The people around me want to remember and some even get upset with me because I can't remember. I feel like I'm just coexisting here. I'm 31 and I have less memories then a 2 year old. Even my short term memory is being affected. I wrote something that I like to believe helps others to understand a little. I also know that unless you are going through it yourself you can't understand. I feel like my life has been taken from me. I try to look at the bright side of it like I was given a seconded chance in life or something, I also believe that everything happens for a reason! It's just hard for me to deal with and I sit here everyday and ask why would you do this to me? Why would you take my life let leave me here to coexist? Another thing is my boyfriend I don't feel for him like I did before. I'm not attracted to him at all should I let him go his own way or should I keep trying for something that I can't spark or find? All its doing is hurting him I can see it. Someone please help me to understand where I go from here? I'm lost I have no idea who I am at all.

[Scotsguy41]

Hi. I’ve had epilepsy since 13 and my moniker for it is the curse lol. Though it’s restrictive I always think it could be worse. Least I’m mobile. Generally healthy otherwise and living and breathing 👍 but totally understand how frustrating and restrictive it can be (just lost my licence few week ago to drive ) but although I’ve not encountered memory loss from a fit Iam aware it can happen. So just incase I put pictures from eventful times and holidays etc with a description of where I was and with who and when etc just incase so that I could at least look back on them. With luck hopefully in time your memory will come back but thought I’d drop a message just to give you an idea of what I have done with memories etc (pics and description etc). Everyone is different so may or may not help yourself but thought I’d say anyway. Good luck

[AmyBadd]

Hi Manda, I'm 31 as well. I've been having them since I was about 14, but I'm lucky that I've not had many in the last 10 years.

I suffered badly with memory loss when I was younger and having lots of seizures, though. It was horrible. It made me feel stupid, and like you I felt that my loved ones were angry that I couldn't remember really special times that we'd had together.

If you've been having seizures for years and this is the only time it's happened to you then hopefully it won't happen again. If it's only been a few days, don't let your boyfriend go just yet. Even if you can't feel it right now, you must know there was a reason you felt so strongly for him, and there's a good chance that will come back.

It must be really hard for your family, too, especially your daughter. I only have a 2 year old son, but I worry so much about what impact my epilepsy could have on him. Try and spend time over the next few weeks spending time with her and making new special memories that you can share.

Good luck xx

[meckford in reply to AmyBadd]

Hi.

I'm now 62yrs and have been having seizures since I was 23yrs. My memory loss is my biggest problem. I can manage the after effects of the seizures, but not being able to remember my children growing up and all those things that happened to me during my 40's and 50's are hard to bear. Also I do feel stupid at times when I cannot recognize people or cannot find an address or location I've been to many times, thank God for the Satnav. There really is nothing that we can do. Except learn to live today, live in the now and enjoy it as much as we can and not take the past and memories as part of us, like other people can. Let it go. Memories are wonderful, memories are special, but we don't have them. We are not stupid. We know whats going on with us, nobody else really does. Learn to accept the problem and live in the now. Its hard, but we can find happiness.

Lots of Love Michele.