Increasing Tegretol and an increase in seizures???


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Hi, My daughter is 17 and has temporal lobe epilepsy. She experiences complex partial seizures during the day and grand mal seizures during the night.

Over the last few years she has had infrequent seizures, maybe two or three a year. We went on holiday in June and she had two seizures in a week. Her neurologist increased her dose of Tegretol Retard as she wants to be able to drive as soon as possible and they were hoping that this would make her totally seizures free.

However, she then started having approx. 2 a week and so her Neurologist suggested increasing her dose again. She now takes 600mg twice a day. However the seizures just keep coming more and more, she has only had 2 seizure free days in the last 10!!

Her neurologist has now suggested we reduce her dose back down to 500mg twice a day, however, my husband and I are really nervous about doing this in case it makes matters even worse.

I would be interested to hear whether anybody else has experienced an increase in seizures following an increase in Tegretol????

Sorry this post is rather long - we really don't know what's the right thing to do :cry:
I've been on Tegretol retard (Tegretol CR in Canada) for decades & it seems to be the only thing that lessens my seizures though it doesn't really control them much.

All medications effect people differently, I just got off trying Lamotrigine & it increased my seizures (in number & intensity) greatly.

Always keep an eye on what your daughters seizures do. Some medications can effect people counter to what they're supposed to do like the lamotrigine did to me.

Also, be very careful when considering driving. Even if your daughter has no seizures because of a medication, remember that it's very common for people taking AED's to be less observant & have slowed reflexes.
Thanks for replying.

Her epilepsy nurse did say that Tegretol didn't normally have this effect but that people did react differently. We'll have to reduce the medication and hope for the best I think.

In respect of the driving - she is just about to apply for a free bus pass as she realises that driving could be along way off :-(

It's frustrating as I'm also epileptic and on Tegretol Retard which does control my seizures perfectly and we just wish she was having the same luck at the moment.

Again, thanks for taking the time to reply.
I agree with Eric, sometimes the meds have the opposite effect than intended. If they seem to be making your daughter's seizures worse then reducing the dose will help. Unfortunately, there's no way to be sure until you try it. (Epilepsy seems to be all about trial and error, doesn't it?)

You mentioned that her seizures increased during your June holiday. Did you notice if there was a specific trigger that brought them on? A lot of people have been bothered by the summer heat lately (though I don't know if that's a factor where you are). Given your daughter's age, other possibilities might be hormones or changes in metabolism.
My mother sais I was a monster on tegretol. I think it was my first one. I was hitting every body.Good night.
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