Hi my name is Claire
I was diagnosed with epilepsy 9 years ago when I had a seizures whilst temping at a call center and taken to hospital. I do however believe i started showing signs of epilepsy when i was around 13 when i had a episode in bed where i could not breath or move this was diagnosed as a night tremor and was given 10mg of Clomipramine every evening (which i am still taking) these became more frequent and when i was 16 at the beginning of my GCSE’s my arm starting going into what is best described as really bad cramp where i had no control of it and it would just bend up my hand hand would go into a very tight fist the Dr said it was probably just hormones, these became more frequent as did my night tremors which were getting worse to the extent that i started sleep walking and would wake up completely disoriented would have usual wet myself and not always in bed i would then carry on the day with a raging headache as the Dr still said it was hormones and iwas just having “wobblies”. When i got my degree and started working full time in hotels my family and friends start to notice that i would have short periods of what i can only describe as vacant time where people whould be talking to me then i would just stop people what talk at me ask if i was ok then suddenly i would just continue where i had left off. Dr just said i was getting over tired due to shift work and i should find myself a job with regular working hours. It was whilst i was looking for a regular job that i had the seizure where i was finally diagnosed with epilepsy and was started on Levetircetam originally 500mg twice a day. since then i have not had a seizure where i have lost concessness or awareness and now are localised to either my right are (like when i was 16) or my right foot these happen in clusters where i will have on approx. every 2 hours for 3-4 days then they start to fade away and are usual gone after a week. Because all i had was i discussion with a specialst which completely baffled me. 8 months later i had my first set of seizuresas didn’t really know what to do i saw my doctor how up my meds to 1000mg of levetircetam twice a day and went i went back again a few months later he up them again to 1500mg twice a day. When isaw my specialist a year later (as my epilepsy is only seen as minor) he said the Dr had done weong but did not want to lessen my doeage as it have side effects or effect my epilepsy. i countiued to just see the sepialist once a year but felt let down as he would ask me how my epilepsy had been over the year and always say that its under control even though i continue to have the localised seizures ever few months normally after a stressful event. I feel very lucky that i got a job in admin for the district nursing team who knew that there was a specialist epilepsy nurse who visited the hospital and she took me on and has answered a lot of questions and recommended i take 10 to 20 mg of clobazam aswell. I have joint this forum as i feel very let down by the NHS because i only had Minor epilepsy and feel that maybe i should not be on such a high dose and as all the levetircetam has done is stopped me losing concesness then maybe there is a different medication that could possibly lessen the amount of seizures or shorten the amount of time they continue for. I also hope to learn a lot more about epilepsy and self management.
