I know there have been posts about this I am sure, but I am currently in the situation where I am able to start weaning off my anti seizure meds. I was cleared about 7 months ago that my AVM was successfully removed by my craniotomy. I found the AVM due to a seizure I had. Being that my AVM was most likely the main cause of this, I was put on the anti-seizure meds as a precaution before surgery, and also after as my brain heals.
I have gotten the spiels from my doctor that she can not guarantee that I won’t have a seizure again being that sometimes seizures can happen after craniotomies. My EEGs (1) prior to surgery and (1) EEG following surgery showed no signs of seizure tendencies, but it frightens me when my doctor tells me they can only be 50% reliable. I most definitely want to stop taking my kepra and wean off appropriately, but I am terrified of potentially having another seizure.
Has anyone else recently been in a similar situation? and what was your outcome?
Hiya Taylorlyss,
I have no experience to share with you on this, but like you I will start weaning off keppra round about March and am a bit nervous incase I have another seizure too, so it will be good to hear others experience on this. What dose are you on? I’m on 500mg twice a day.
All the best
Amanda.
I recently went to my neurologist to talk about weaning off of Keppra they did an EEG and they found some activity and the fact that I occasionally get auras when I get dehydrated or overheated they pretty much told me if I weaned off of the Keppra I may have a seizure so my neurologist and I decided to stay on the Keppra for the rest of my life is I don’t need to have a seizure again; not the outcome I was hoping for but I really don’t want to go down the road of having seizures.
Ah I see mike, what sort of auras do you get? I’ve only ever had two seizures (grand mal) one after the other 5 weeks after my bleed and surgery. I was put on keppra 500mg twice a day and touch wood I’ve been fine since. After a scan they noticed I had an encysted horn which created a build up of csf fluid so I’m hoping my seizure was down this rather than developing epilepsy. They certainly are no fun to have and scare the daylights out of those that witness them. I’ve never been given a eeg,I think the neurologist is gonna just wean me of with out having one. I sometimes think I like the security of just taking the keppra as I don’t suffer any negative side affects from them part from decreased appetite. Which helps with the waistline:joy:.
@Amanda13 I get an odd tingling sensation in my head and a weird taste and smell and sometimes flashing lights in my eyes but that only happens when I push it too hard.
I am also on Keppra 500 mg twice per day, only side effect I have is some drowsiness about a half hour after I take it which is a small price to pay for not having seizures.
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