Nocturnal Frontal Lobe Epilepsy

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wichowaka

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Hello everyone,

am new to the forum. I write from Italy, sorry for my bad English. I was diagnosed with a NFLE (for many years have thought it was sleepwalking violent). I have many episodes each night: 4-10 at night, sometimes violent: I get up, I slam violently on things and desperate cry. Often dream, at the same time, going to die and I slam desperate.
I tried the tegretol and lamictal without results.

Someone suffering from this epilepsy? What are your experiences?

Thank You
 
Hello wichowaka, benvenuto a CWE!

I don't have nocturnal seizures, but I know other members do and will respond.

Topamax (Topiramate) is supposed to work well against Nocturnal Frontal Lobe epilepsy -- you might want to ask your neurologist about trying that medication.

Best,
Nakamova
 
wichowaka

Sounds like you need to see your neurologist again, you should try and protect yourself when you go to bed so you do not hurt yourself mind you I hurt myself enough and the desperate crying and moaning are normal for me as well, they usually happen after I hold my breath. There are a lot of other medications for you to try yet and will eventually give you some control if not full control.
 
Benvenuto!

I have nocturnal seizures too. I have sometimes walked around after a seizure. I wake up on the couch in the living room and have no memory of going out of my room. One time I went walking outside almost naked and walked to my father's house and tried to get in without a key. Again no memory.

I tried tegratol but the side effects were horrible and it did not work very well for me. Now I am on Depakote and phenobarbitol and that works fine.

You need to find the medication or combination of medications that works for you. Every person is different. If what you are doing is not working, go back to the neurologist until you find something that does .
 
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