Seizures During Sleep

[Geema2011]

To the professionals out there:
For the last 3 or 4 years, I've been having seizures.
At first, I was having "Black Outs" for couple seconds, and then they increased in time a bit.
After a year or so, The Black Outs Lead to seizures, foam coming out of my mouth, i would bite my tongue, etc... and i would be on them for about 2 to 3 mins.
I met with a Neurologist in Utah, after the MRI's and EEG's being done he recommended that I should have a Surgery, that was 70% sure it was going to reduce my seizures, or not have any at all after.
Well I decided to go through the 8 hour surgery, and a very expensive one. After the procedure, I was put on "kepra', Within a Month I started having Seizures, Just like before, and i kept having them. I've done More MRI's everything seemed to be ok, the Neurologist stated that I should keep taking the meds and if no changes appear go through another Surgery... and hope for the best...
I kept taking the meds, no changes. Having my origins from Europe, i started seeking help over there. I met with the Neurologist In Pristina Kosovo, who was highly recommended, Told him my story.
He had me do an MRI and EEG, While the MRI looked normal, (besides the part of the brain missing due to the surgery), The EEG, Showed the possibilities of my Seizures.
And By This Neurologist I was put on Tegretol CR 400 mg.
Ever Since I've been taking them, I haven't had a Seizure during the day, But yet i started having them in my Sleep, nothing similar to the seizures i was having before, during the day.
Now in my sleep, I start swallowing raise my right hand, open fist, i move my fingers, for about a min, after that i start talking just about anything, for about another minute or two...
I've Contacted the Neurologist in Europe, he recommends that I keep taking the meds, because sooner or later they'll stop...
But I was wondering if there's anybody out there, that maybe has a different answer for such a unusual activity.
Your Time and Effort would be greatly appreciated... Thank You

[SusanSalisbury]

I'm glad your European neurologist was able to give you so much help via the switch to Tegretol.  Given the history you outlined, I think you will benefit from having a neurologist you can see in Utah.  Seizures can require a lot of careful hands-on monitoring, as well as adjustment of medications and lifestyle over time.

You might want to check if there is an epitologist and an epilepsy center in your area.  Epitologists are neurologists who specialize in seizures.  

This site will show you Epilepsy Centers and the physicians associated with them near Utah.  
     http://www.naeclocator.org/locator/resultsbyzip.asp

If you are no longer in Utah, use this link and enter your zip code to find a epilepsy center near you.

     http://www.naeclocator.org/locator/

I wish you well.  I know seizures can be difficult to manage.  

Sue Salisbury, RN, BSN
Maui Hawaii

[teddybears4ever2]

I personally would keep taking your seizure medication.  My brother-in-law used to have then in his sleep, too.  One day he out of the blue he decided to stop his medication and he began having seizures during the day.  I will say what I always say, I am not trying to scare you, but you should always do what the doctor says.  I'm very sorry you are having to go through this.  I don't have any first hand information, all I can go on what my brother-in-law told me.  Hopefully someone will come along and know more than me.