Gbm medication for epilepsy? - Glioblastoma Support

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Gbm medication for epilepsy?

Daybreak2 profile image
5 Replies

I would like to know what others are taking for epilepsy. My husband has Gbm diagnosed one year ago after a seizure and had successfully tumour removed, chemotherapy and radiotherapy. Just in February this year he started to get epilepsy again, one per week , and has been put on 3000g levetiracetam, and additional oxcarbazepina when we visited A&E after third attack on Friday. It seems quite a lot. Before he was on 2250g levetiracetam only. Does anyone have any similar experience to share? So far they don't say tumour has returned as per scan just showing scar tissue activity etc from the operation. Thanks!

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Daybreak2
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Tansi75 profile image
Tansi75

Hi Daybreak2I have been taking 500mg Levetiracetam tablets twice a day since 2015 due to the onset of a second grade 4 glio which was removed. I have not had any problems since taking the tablets.

I was also prescribed Clobazam 10mg tablet, to be taken if I felt a fit was coming on. So far, I have never had to use them.

It is good that his scans are showing no return and I hope that they continue to do so.

Do you know what might be triggering the fits?

15773 profile image
15773

Hi there,my husband has been taking 750mg Levetiracetam tablets twice a day since December 2021 when he had a seizure prior to diagnosis of grade 4 glio. Fantastic that he has a clear scan, sending lots of positive thoughts that this may continue.

Daybreak2 profile image
Daybreak2 in reply to 15773

Thanks for sharing and your positive wishes Hope your husband is managing OK too.

Daybreak2 profile image
Daybreak2

Thanks. It seems my husband is stuck on this high dose treatment now til next week when we have an appointment with the neurologist. We got through to the consultant today and they said carry on for now with the medication prescribed by A & E even though they don't normally use that combination as he has started . It makes him tired and a bit dizzy. We are in Spain and you tend to get high dose everything. May be the fits were brought on by being a bit more active as chemo finished in December, and he had been feeling fine. Hopefully will settle down soon

Daybreak2 profile image
Daybreak2

The medication was changed to an add on of lacosamida plus levetiracetam and now seems to have done the trick after a few bad days.

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