It's great that we can all share our horrific stories and experiences of living with this damn condition. I've always wondered how I cannot be aware of holding a red hot iron on my belly and then wrist, or the end of a red hot hairdryer on the palm of my hand and then right breast, requiring plastic surgery to sort my fingers out. I think there is a big connection with hormones, with Catamenial epilepsy, a woman's monthly cycle affects their seizures, since going through the menopause, I have Atonic seizures, which are terrifying, and effect "middle aged women" OMG!! Three times last week, I just collapsed to the floor, no convulsions, just incontinence, and waking up in the back of an ambulance or worse still, staggering about in a daze, with no memory whatsoever of just before it happened, only us guys on here can understand how terrifying it is.
Our Episodic memory, is what seems to be most affected by epilepsy, where we just completely forget chunks of our lives, and I am looked after by a professor at Queens Square in London, and he said that with every seizure we have, a little bit more of our memory is erased, as human beings, our abilities to make new memories diminishes after the age of forty anyway, so we've got it all against us haven't we?? I haven't read about many people with epilepsy having their Implicit memory affected by epilepsy, this is where we would forget how to clean our teeth or use cutlery for example. I get so frustrated not being able to recall seeing The Eagles at Wembley Stadium in 1996, or when I was on holiday in Hong Kong, I hardly remember a thing about a whole fortnight! Both my brain surgeries wiped out memories of the preceding decade, so I really am stuck in the 1980's, it's bizarre, I'll look at a photo with me in it from the 1990's, but I still don't really remember, even though it's there in front of me!!
I would encourage people with epilepsy to keep a diary as I do, and take a lot of photos, as my professor also told me, the memories are always with us, and the brain is like a filing cabinet, it just needs someone or something to open the right drawer, pull out the right file, and the memories come flooding back. Sometimes anyway, I've never been able to recall that concert!!
Best wishes to you all, keep smiling, and lets all keep talking on this wonderful website, only we can understand each other. Love Lainey XX