hi everyone im sandra and my mum has had epilepsy since she was 19. She is now 50 and it's just getting worse. She takes tegretol retard, lamictal and frisium in quite high doses. Doctors have chopped and changed her medications a lot but she's been on the same doses now for a while. She takes tonic clonic seizures which begin as secondary generalised and normally fits 2-3 times a week and has had some very serious accidents and injuries as a result. A few years ago she started taking some sort of fit which was totally different to her norm. She was totally conscious but it was as though she lost total control of her limbs and her legs and arms were flinging about with no control. Her head flung about too and her jaw was opening and closing approximately 200 times a minute. This went on for a few days and doctors put her on a course of valium to stop it. It was awful but thankfully hadn't happened again since. Mum goes to liverpool in england for all her treatment as northern ireland doesn't have as good doctors for epileptics. This makes it difficult when we need help. Over the past month at least once a week the type of fit i described above has been happening and doctors just keep upping her dose of frisium, no-one knows what it is or how to treat it. She had a VNS fitted in April this year and has had it turned up to 1.0 with no real change in her fits. Sorry this is so long winded but has anyone else experience this type of seizure and what advice have you been given?