Epilepsy Research UK
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Epilepsy after encephalitis

Hi everyone, my partner had encephalitis (unknown cause) last October. He has been taking a high dose of steroids since then to rule out an autoimmune cause but, since then he has been having between 1-3 seizures everyday. We have been told they are complex partial seizures and while his recovery is quick they are so disruptive to our lives. He is taking clobazam, keppra, tegretol and epilim and the best control we have had is one daily for a month at the same time of day. He has been investigated thoroughly at a specialist epilepsy centre and was seizure free for 10 days after upping the tegretol but after that went back to the usual 1 a day. Can anyone help at all please?

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Hi sorry to hear this it is a horrible worry. I have had epilepsy for 30yrs started after the MMR jab at school when I was 14yrs I’ve had no pattern & severe seizures but worked I also have a 14yr old son, I’ve tried most drugs over the years. Anyway due to a doctor perscribing me clobozam 6yrs ago as an add on drug (who I was told at the time was a neurologist) I ended up in ITU with a swollen brain, I survived just! & was perscribed 3 or 4 meds like yourself, I was like a zombie & still having seizures then I saw a wonderful neurologist who stated if you have epilepsy you should only be on one drug alone so months of weaning off (which also isn’t pleasant) sorry just being honest, but it’s worth it! & on to Epilim alone I still have a small dose of topiramate 50mg as I found it hard to come off (detox) I’ve been so much better seizure wise since, the mix of anticonvulsants just doesn’t work I have since been told this again. Tell them you want to try one at a higher dose...I wish you well xxx

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Hiya the exact same thing happened to me after encephalitis that was in 1999 everything was perfectly normal till the april 1999 everything went downhill rapid till october 10th where i was left in intensive care as no-one knew wot was going on was in hosp for 6 weeks rehabilitation new yrs eve i had my first ever seizure and they continued till exactly a year later i ended back in intensive care after being told it wld never happen again so i got on with life and tried every single tablet known to the doctors until they realised it was refractory no amount of tablets wld stop it and having between 8 and 12 seizures a day was tiring ended up dec 13 having a temporol lob lobectomy done and finally seizure free and have been since dec 2013 the thumb nail is me after brain surgery

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