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Anonymous Story: It’s the not knowing that scares me

IMG_3552This personal story was submitted to Living Well With Epilepsy by an anonymous contributor on her experience with memory loss due to seizure activity.

On May 4, 2011 I had a seizure.

That night I went to a party. My flatmate was ill, so she couldn’t come. When I returned home I went to her room to tell her about the party.  We had the usual after-party chat.

Memory Loss

That’s when I had a seizure. I’m talking a full blown, tonic-clonic seizure at the bottom of her bed. But here’s the thing. I don’t remember getting home, going into her room, or ANY of the conversations we had. Even as I came around, and I kind of remember this, I asked for my flatmate, even though it was her I was talking to. “Go away Rose! I want Jane!” I insisted. My poor flatmate. This was the first seizure she’d seen me have and I didn’t even acknowledge her help!

It was when I fully came round the next day, I spoke to my friend about what had happened. That’s when I became aware of the events of the previous night and the memory gaps I had.

I didn’t know where I was, who I was with or how I got there. I still don’t remember anything that happened. I lost up to 45 minutes of my life.

I don’t know about anyone else, but this always happens to me. My epilepsy has taken away my memories. I wake up from a seizure and have no idea how I got to where am. I had a seizure in the shower one morning, I don’t remember getting in the shower. All I remember is what happened after that. It terrifies me. I don’t seem to have anything that tells me when I am going to have a seizure.

Seizure Clues

Take last week for example, first seizure in over 2 years and I am still only 99% sure I had one. I had a stinking hangover and had my head in the toilet bowl. Next thing I know my flatmate is helping me out of bed and giving me a change of trousers as I had somehow wet my bed. In between those moments I assume I had a seizure. The fact that my tongue was bitten to shreds, my muscles hurt and the fact that I wet the bed were my only clues. Other than that, there was absolutely no give away! No tell tale sign for myself that I was about to go into a joyful spasm for a few minutes.

Not Knowing

From what I have read, people seem to have tastes in their mouth, or smells, or sounds that tell them that a seizure is oncoming! That you better find a comfy place to lie down ’cause you’re about to have a seizure! But me? No. My body doesn’t want me to have warning. Or if it does, it doesn’t want me to remember at least. How very kind. Personally, I find this the hardest part of epilepsy. The not knowing. Scares me every time.

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