Seizure meds for life

Hey there!

I have a pretty generic question regarding seizure medicine. A little history: right temporal AVM ruptured at 18, recovery was long but I’m pretty much 100% now besides seizures. (I’m 30 now). Initially, I was given seizure meds (5ml) with one seizure. Meds have been increased and decreased as I have seizures however my seizures have been stable for 7 years. I’m wanting to get off the meds. I’m wondering do AVM survivors stay on seizure meds forever? I know everyone is different but I’m interested in everyone’s experiences.

I’m not really sure. I have had seizures since the discovery of mine. In faact that was how I found out. I have been seizure free since my vagal nerve stimulator has been put in. Yeh me!

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It gas 2 years now. I forgot to put that i. My response.

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Where is spell check when reallly do need it. Lol.

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I stopped taking them years ago. Best thing I ever did.

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I’ve tried it twice and had two seizures shortly after.
I would definitely say consult with your doctor and carefully consider. My latest neurosurgeon advised that i would be on seizure medication for life.

I was told by my neurologist once you’ve been diagnosed w/epilepsy I would be on it for life. I’ve also havent had any seizures for a while (knock on wood). I’m no doctor, but maybe mgs or type of anti-seizure meds may change, but once you have epilepsy you’ll be taking it for for life.

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It’s 43 years,wow ive just realised today, since I discovered mine after SAH. I’ve been on seizure meds since year after bleed. They did things differently then. Had seizures ever since never found any meds that worked for me but my AVM was treated by stereotactic Radiosurgery and hasn’t returned. We are all different and meds side effects can sometimes be worse than seizures.

Very interesting responses! I completely understand needing the medication if the seizures are active. In my case I haven’t had a seizure since 2014. It seems the doctors don’t want me to stop taking them ever. The side effects are really kicking my ass

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I would defintely consult your medical expert in this area before stopping any medication… please keep in mind it may be possible the reason you have not had any seizures is due to the medication so I would suggest having a discussion with the doctors who placed you on them in the first instance… God bless!

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I recently (Dec 21) went to see a neurologist to see if I could reduce my seizure medication as my one and only seizure was in 2015. I have an unruptured AVM in the left frontal lobe. I just wanted to see if I could reduce my Keppra 500mg x 2 as I am not really a fan. He said I could reduce it but then I would have to take a second epilepsy drug like Valproate I think it was. I didn’t like that idea at all so I am still taking Keppra as I have been for the last 7 years. Perhaps I will see another neurologist to get a second opinion to make sure. Hope this helps, other than that I stick with the Keppra very strictly ie take it at the same time every day without fail.

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I have been taking Kepra three times a day since 2011. An small dose.
Seizures never had as such, only a very short kind of gap. I won’t remember or notice anything, just the people that are with me, and they said that is like if I remain still for a short period.
Like 1 minute. Or so
After that I continue as normal.
Anyone similar???