Hi everyone: off phenytoin - on epilim - not without probs.

[Andy Green]

Hello everyone - good to be here. I've been on phenytoin for about 20 years but in recent years have had increasing problems with occasional generalized seizures but more significantly complex partials szs with a specific speech focus either in speaking, hearing or both. I tried keppra last year but got very sleepy. Since Jan this year I have been coming off the phenytoin, now down to 50mg - nothing next week - and increasing epilim, (now on 1600mg).

I hope/think that the epilim is helping to prevent full szs, but for the last week I've been struggling with a couple of dozen (at least) partial szs a day. I won't bore you with the fine details except that it involves daft non-words or actual words that have no meaning but 'do mean something to my epileptic self in a kind of way!' as I put it once!

The big question is - Is the epilim causing the parital szs, or am I simply not yet used to taking little/no phenytoin, or could it be something else. True, I was having partials while on phenytoin (450mg on full dose), but it seems worse now. Is all this therapy a waste of time? Thing is I'm a primary school teacher and want to get back to work asap. They're good with me but of course have the children's interests at heart. I wish I could say 'I'll be back next week", but the partial szs are still not in a tolerable level. I can't be telling the children about the water cycle and sudddenly say, "And maybe singing Jane falling operate in cloud' or something!"

Sorry I've gone on a bit. I just want to be sorted out and get back to work. Has anyone else had similar experiences or advice? Cheers guys.

[Bernard]

Hi Andy, welcome to the forum.

Switching meds always leaves questions when seizure patterns change. Could be a result of the new med (adverse event), the new med not working fully or withdrawal from the old med.

Unfortunately, there really isn't any way to tell how anyone will react to a med until they try it for a while, so you aren't likely to get a definitive answer. You'll just have to try it for a few weeks and see how it goes.

Sorry. I know that isn't what you wanted to hear.

[Andy Green]

Hi Bernard and thanks for repyling. You're right of course - there are too many variables in play right now to know what 's causing what. It's good to know there are caring and understanding people out there. I'll keep you posted re progress (+ive you see)! :wink: