To hate being epileptic

[Wellfuckmeinbothears]

Just that really. I’m so angry that I have it. It’s embarrassing. It feels like it’s ruining my life. My abusive ex slammed my head in the car door 5 years ago and I’m just so angry that I’ve been left with this lifelong condition. I hate the fits. I feel like they rob me of any dignity I had left. I’m happily married now and my dh understands, he is so supportive and helpful, but why does that awful man who did this to me get to walk around free from what he did when I have to live with it forever? It isn’t fair.

The moment a partner shows they can be violent or aggresive please leave. It won’t be a one off. It won’t get better. It’ll always get worse. There are charities who can help please just find a way out. I thought I would be ok, I thought I’d fix him. I didn’t. He broke me. I hate this. I hate that I’ll never be able to drive. I can’t make a phone call without twitching. I make cups of tea over the sink because it feels like an electric shock through my hands if I concentrate on anything. Yet he can. He can live as normal. I hate having epilepsy. It feels like it has me.

The NSE (National Society for Epilepsy) website have a fantastic forum who can offer great support so it may be worth joining?

I was part of it for about 5 years and they were fantastic. We used to have meet-ups around the Country and on one occasion a woman even flew over from America to meet us. A group of 10 of us even went on an Adult only Weekend holiday in Butlins!!

What dose of Lamotrogine are you on? My seizures didn’t get under control until I reached 350mg (175mg twice a day) and it took 6 years to achieve it.

Sorry you've had another seizure, it's shit isn't it. I always feel very weepy for a few days afterwards. My nurse says it's the shock to the system and takes time for everything to settle. Do you get post ictal headaches?

I understand your anger and bitterness about your ex. Have you had any counselling at all, it's a huge thing for you to try and get over all by yourself. You absolutely shouldn't feel any guilt as it was his actions but I also understand that inevitable element of "if only I had..." and it's so easy to turn it in on yourself (especially after them telling you it's your own fault ) but you really shouldn't. I think we also carry guilt that we put our lovely DH's through so much worry and stress, your comment about "DH looking at me with fear" really resonated with me. Perhaps if you can get a link with the epilepsy nurses they could get access to someone for you to talk it all over with?

Thank you queen for the epilepsy link, that looks useful. I've avoided specific forums myself as I am in denial but I will make the effort.

I'm on lamotrigine too, still titrating as seizures aren't under control. I don't like it. It makes me both tired and unable to sleep and I don't know whether it's contributing to my memory issues or if these come from the seizures.

What meds are you currently on wellfuckme?

I'm on lamotrigine too, still titrating as seizures aren't under control. I don't like it. It makes me both tired and unable to sleep hmm and I don't know whether it's contributing to my memory issues or if these come from the seizures.

When I was titrating my dose by 25mg every two weeks I was permanently exhausted. It felt like just as my body had adapted to an increase and I started to feel more normal it was time to increase the dose again. It was really rough.

Lamotrigine has always affected my ability to sleep and I am never asleep before midnight and haven’t been for well over a decade. My memory is horrendous, really bad, both long term and short term. The fact I’m seizure free leads me to believe it medication related so I have just accepted that it’s part of my life now.