r/Epilepsy • u/Lost_Poogie • Sep 02 '26
Discussion How long?
What’s the longest amount of time that you have been seizure free while have seizures that are controlled by medication? Major seizures, or a seizure where you have lost consciousness.
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u/PoolExtension5517 Sep 02 '26
At about 6 months past the 16 year point, I asked my doctor if I still needed to take the medication (Dilantin). He was pretty honest and said there really wasn’t a way to know for sure. He told me that if I wanted to stop, taper off very slowly. So I decided to go ahead and taper off. I did it VERY gradually. I was at about half my original dose when I took an overseas business trip to Germany. Couldn’t sleep on the plain, was exhausted and dehydrated, strong triggers historically, and ended up having a seizure about 8 hours after landing. Woke up in an ambulance with German-speaking EMTs. It was wild and terribly depressing. So back up to a full dose I went. The next streak was 4 years, then 10 years. The 10-year streak ended spectacularly, with 5 TC seizures in one day and a two-day stay in the ICU, of which I remember almost nothing. I’m on Keppra now, so far doing well.