For 25yrs i believed i had tempral lobe epilepsy.ive just had an eeg and mri to find out why my eyes kept flickering and i was scared to close them.ive now been told i have generalised and photosensitive epilepsy.its terrified me and i need to speak with others who have the same.i cant move on until i find my confidence back and stop being scared. i have so many questions. what work can i do? will my daughter get it? i could ask nurses but they seem to patronise.to them im just a number.please help me.

Hi there. I have photosensitive epilepsy as well. I've had it since I was 14 and I'm 26 now. You can work at a normal job as far as I know, I've heard of evidence that photosensitivity is genetic. My brother has had seizures playing video games before. However, he is the only other one in my whole family who has the same issue as I do, so I wouldn't worry about it much. I would suggest becoming as educated about epilepsy as possible. There's tons of other people with this same disease. I'd write down your questions and bring them to your neurologist or epileptologist. It's scary at first I know, but there are people in your same situation like myself and many others that can support you and help ease your fears. There are websites out there, too like epilepsytherapyproject.com, the Epilepsy Foundation site, and many others. Type in epilepsy or photosensitive epilepsy into your browser and search around. I'd also suggest polarized sunglasses with the side shades on them. I found a pair for less than $20 dollars that also fit over regular eyeglasses. That way there's less of a chance of having a seizure, and having eye pain or headaches. Hope this helps out at least a little.