I lost 14 years of my life because I was taking the wrong tablets. I was on a low dose of sodium valproate and I was taking carbamazepine but I was still having regular grand mal seizures. My consultant told me there was nothing he could do about it.
My family were very supportive but we believed my consultant to be the expert and so accepted what we were told. I just had to get on and live with my seizures.
Seizures meant I couldn't drive
My life was totally restricted. I couldn’t drive. I struggled at work, living in permanent fear of having a seizure in front of colleagues. Although nobody judged me, I still worried about how I looked and what my colleagues thought of me. I became very depressed.
It was only when I was saw a new GP that I was referred to epilepsy specialist, Professor Ley Sander. I was admitted to Epilepsy Society’s Sir William Gowers Assessment Centre in Buckinghamshire where I underwent several days of tests including an MRI and ambulatory EEG.
The tests showed that I had juvenile myoclonic epilepsy and was on the wrong dose of sodium valproate. Carbamazepine was also the wrong drug for me. After all those years I couldn’t believe what I was hearing.
My medication was adjusted and for the first time in years my seizures were brought under control. That was four years ago and gradually my life has really improved. At 42 I feel I am almost back to normal.
Unfortunately the new drug regime has increased my appetite and I have put on weight but that is something I am working on with Professor Sander now that my seizures are under control.
Professor Sander has been fantastic. I feel he has given me my life back. I just wish that 14 years ago I had challenged what my consultant and GP said. I put my life in their hands and they let me down. I wish I had asked to be referred to another specialist.
Find out how you can get a review for your epilepsy. Information includes a downloadable letter to give to your healthcare professional and a factsheet with a list of topics you might like to discuss.