New diagnosis - NES but still epileptic????

[Sltwine]

Help understanding please!!

My daughter is 17 and has been diagnosed with Epilepsy since she was 13. I'm also epileptic but my seizures are well controlled where as my daughters aren't.

She has grand mal seizures at night and what they have always considered complex partial seizures during the day. However, I have managed to video three of her last attacks and now they are saying that the day time ones are non-epileptic seizures and that we now need to find out what are causing these!!

They have been playing around with her medication for the last six months without any success of stopping the day time seizures so when I asked if we could surely reduce this medication they were still hesitant??

Does anybody else have non-epileptic seizures during the day and grand mal seizures at night??? If so what causes the non-epileptic seizures??

I feel we are right back at the beginning with no hope of stopping the seizures during the day as they don't know now what are causing them - or are they wrong and they are complex partial seizures that just aren't responding to the current medication.

PLEASE HELP!!!

[Malla]

The Dansih Epilepsy Society told me that up to 30% of people with Epilepsy also have non-epileptic seizures (or psychogenic non-epileptic seizures). It's probably taken from Danish research, but still , hugs Malla

[ANGS1113]

Wow this sounds exactly like what is going on with my husband? They have no idea what is causing the non epileptic episodes that happen everyday.
They range form 30 min to 2 hours, he has whole body tremors, can't talk, barely walk. The neurologist could only tell us non epileptic episodes are physcological and very common among epileptics. I know how you feel, it is very discouraging, as if the grand mal's weren't enough right? Sending prayers your daughter's way, I have hope that for everyone one day this will be controlled.

[Nakamova]

I'm not sure that non-epileptic seizures are all that common. The statistics are shaky, since it's often a catch-all diagnosis when the neurologist can't get confirmation of epilepsy via EEG. For many folks, their seizures are too transient, or occur too deep in the brain in order to be picked up on the EEG. These folks are then told they have non-epileptic seizures when it's not entirely clear that they do. The absence of EEG results does not mean a definitive diagnosis of non-epileptic seizures.

If the seizures respond to anti-seizure medication, then that's a pretty strong indication that they are epileptic in nature. If they don't, then that doesn't rule out epilepsy, but it means a diagnosis is trickier. Not a whole lot is known for sure about non-epileptic seizures, but it's thought that they may be psychological in origin, a sort of PTSD reaction.

Sltwine -- did the doctors decide that your daughter's daytime seizures were non-epileptic based on the video evidence alone? What was their reasoning? What sort of symptomes does she have during the day?

[Malla]

Agree totally there Nakamova. I also was suggested to have psychogenic non-epileptic seizures, but their drugs for PTSD did nothing for me - whereas LYRICA did. And as far as I have been told Lyrica is an epileptic drug - though here in DK used as an addittional drug in epilepsy treatment. Hugs Malla