Epilepsy

[backseatcookers]

So sorry if this is annoying - is there a topic or well known sort of long tuning thread in can join to talk epilepsy.

I never had a seizure until 30, following severe head trauma during a road traffic collision.

So a totally life changing diagnosis and intense way to get to grips with having epilepsy including massive losses of independence due to driving, memory impairment and the other injuries from my crash.

I feel very lonely when it comes to my epilepsy. It's such a strange and hard to explain thing, like the memory blackouts and fear of something happening when I'm vulnerable, feeing a burden, a reassessed perception of myself and my limitations as a mother safety wise should I have kids.

Any thread suggestions would be so welcome. I am actually feeling a bit scared.

Go to Epilepsy Action. They have a chat forum. And if you’re feeling really anxious, there’s a phone line. I rang it once and they were lovely. Good luck xx

@backseatcookers hi, I have epilepsy and am a mum of 2! I know exactly what you mean by feeling lonely and not quite being able to describe the feelings associated with having epilepsy. Especially it’s unpredictability and the fear that comes with that. I would be happy to chat with you about this if it would be helpful? Just drop me a pm x