My son had this type, he has since outgrown them, thank god. My son's started at age 6 on my birthday. He ahd just returned from the fall festival at school where he had been in a haunted house with a strobe light. He went to sleep and an hour later he cried out with this weird noise that sent a shiver up my spine. I went to his room to find him having a tonic seizure. He had never had any problems before. nothing perfectly healthy child. We took him to several doctors and it took several years for them to finally diagnose the type of seizure.sometimes he would have focal seizures, sometimes he would appear awake, but delusional, sometimes he would have huge seizures that left him in a vegetative state for hours or days.He and i began to fear sleep. Finally they got him on lamictal after trying every other med. and they slowed and eventually stopped. He wa seizure free for a year before they took him off the lamictal.I'm happy to say he is still seizure free going on three years.I once asked him how it felt to have a seizure.His words still give me nightmares and break my heart. He said it feels like you can't breathe and your chest is going to explode. like your whole body is on fire. I look back at those days as a long horrible nightmare. I pity any mother who has to live through this. I almost lost my son more than once to this horrible disease,(sometimes he would stop breathing with the seizures and we would have to do mouth to mouth till the ambulance could arrive) As bad as it sounds there is hope. My son is 12 now he plays football and skateboards.He does well in school and has alot of friends. The seizures are an ancient memory that he talks about like it didn't happen to him. Children can outgrow some kinds.I thank gog for lamictal and sleep studies those were the keys to his diagnosis and control. I still find myself waiting for that horrible cry in the middle of the night that always preceeded his seizures, but so far so good.

Im 36 and i have nocturnal seizures. The only meds that works is Keppra. Hope this helps.

Am digging out this old thread after doing a search trying to find more people dealing with nocturnal frontal lobe epilepsy. My 8 y.o. daughter is newly diagnosed. She is having brief seizures (between 10 secs and 2 mins.) about every 20 mins. all night long. Are your childrens seizures similar? The epi. gave us Diastat to give if more than 3 mins. or more than 2 in 10 mins. I am reluctant to give it as it seems according to those instructions I would have to do it every night. Her seizures are brief and seem so mild (leg kicking. arm movements, nose wiping and lip smacking all in 30 secs. or less) I have a hard time believing they are even seizures. During her veeg only the longest episode (72 secs.) showed an eeg change, but based on the fact that they are all stereotyped they believe they are all seizures, just difficult to pick up on eeg due to their location. I would really like to talk with someone who has a similar diagnosis. Thanks.

I am in my late 50's and have had noctural-only temporal lobe seizures since I was 8 years old.   I have, in earlier years, gone for months without having them, however for the last 15-20 years have averaged between 0-3 a night.  I now have approximately two per night, 5 nights per week. 

 I took dilanten for many years, but have been taking tegretol for about the last 15 years or so. 

 I never know that I have had a seizure and have no indication that one is to occur.  I have been on a number of drug studies trying experimental medication and have during the tapering off/titrating up of old and new medications had very rare daytime temporal lobe seizures.

I often sit up in bed, swing my arms left and right and shout very loudly (it used to be cheers as if I was at a sporting event but for the last few years it has turned into swearing, or so I am told).

 I often never injure myself.  

My doctor has very, very few patients that fit my profile of seizure type. He believes that my seizures are triggered by REM sleep, which I tend to agree with.

My seizure activity has never hampered my active, vigourous sporting lifestyle (I ski, skate, scuba dive, play tennis, sail, swim, exercise, etc.)

I have never found a medication that fully controls my seizures, tegretol has come closest.

PLEASE LET ME  KNOW IF YOU HAVE HAD SIMILAR EXPERIENCES AS MINE AND IF YOU HAVE FOUND MEDICATIONS THAT ARE PARTICULARLY EFFECTIVE WITH THIS TYPE OF SEIZURE.

I would be happy to enterain any questions that you might have as well.

best regards,

DBL