We fight to improve the lives
of everyone affected by epilepsy

Sue

Thanks to a story line now running on Eastenders, I now have a name for the type of epilepsy I developed 55+ years ago. I started to develop morning jerking when I was about 13. My grandmother was slowly dying at home and I developed panic attacks at the same time. I did attend hospital, but the letter sent by GP started with the information that my mother was neurotic so, apart from having blood taken, no tests were done and I was told I had a bad habit I had to learn to control.

I never succeeded, but the my sense of guilt and inadequacy grew and overshadowed my teenage years. My first seizure shortly after rising when I was 18 was diagnosed by the same GP as a catarrhal faint. I was so relieved no one realised it was my fault and tried all the harder to control it.

I still failed and 6 months later, shortly before bedtime I had another major seizure, luckily diagnosed by my GP's locum. At hospital, after an EEG, I was prescribed mycelin. This was a tad hairy as I was not given any advice and back then they had no printed information provided as routine, so I started on full dose - just two weeks before the beginning of teaching practice - which unsurprisingly I failed.

Eventually all was well and I was totally controlled for the next five years when my GP decided to try me without the drugs - again without weaning, just stopping full stop. A fit followed and I was back on the same drug, where I have been ever since. I am now 70.

In many ways I have been lucky. I have been fully controlled and have lived an active life free from the fear of fitting. I was lucky I went to a college that didn't discriminate - a student at another college a year later was simply chucked off the course. I was lucky no boy-friend was deterred (but then in many ways it was just an idea to them as I was so well controlled). However it is probably, I have been told, that the anti-convulsant was responsible for one of my babies dying shortly after birth, and quite possibly the miscarriages too.

I sincerely hope the attitude towards epilepsy is now better - even my own mother told me never to tell anyone, and a friend at college who was terrified of it refused to be anywhere near me after she found out. Hopefully Eastenders will help in that respect.

Sue
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