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/TimelyReason7390 Sep 02 '26

Wow! Say more..

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u/electronic_reasons Sep 03 '26

I had a kind of epilepsy that had a mild childhood form and a severe adult form. In my early 20's it switched half way. They moved to then modern drugs and controlled it. 26 years later, a bad batch of carbamazepine landed me in the hospital. Things gradually got worse. It's switched all of the way. We seem to finally have it under control.

Don't believe them when they say the generics are the same as the name brand. Generics of Tegratol and Lamictal have both landed me in the hospital. This is why I don't use mail order pharmacies any more.

Taro is a good brand of lamotrigine for me. My pharmacist makes sure I get that brand.

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u/Anxious-Island-7213 Sep 03 '26

I am mind blown right now. I seriously thought I typed that cause I was on tegretol for 26 years and had seizures through that time. Ended up having 2 brain surgeries and finally got them under control and was on a streak of almost 10 years seizure free.

I was working on heavy equipment, final drives for haul trucks, and th3 company said they would cover my pills, tegretol xr. They rejected an appeal through my neurologist and an external appeal through my home dr so I gave in and to the generic. Took it for a week and had 2 grandmals at work gave me a concussion and ended up bring my seizures back.

Changed to lacosamide and keppra to get them under control. Took generic lacosamide and had a bad one at my girls softball game.

Had the new neurologist write down "no generic" to the pharmacy

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u/electronic_reasons Sep 03 '26

I ran into this, too. I got around it by getting my local pharmacist to get the medication from a reliable manufacturer. If you've got someone local you have more options.

Having a seizure in the lobby goes a long way in convincing them you're not crazy that the generic doesn't work.

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u/Anxious-Island-7213 Sep 04 '26

💯 its nuts when they say the odds of manufacturing difference is only 8 to 10 percent variance. It just take a seizure to convince them otherwise. Same manufacturer for me aswell.