Sleep epilepsy or side effects - Epilepsy Message Board

dalesgirl · 06-20-2004, 02:01 PM

My husband started Dilantin back in March when I witnessed a Grandmal seizure. It was caused by a head injury in a diving accident 2 years ago and in March we were informed that the seizure was because of scar tissue in the frontal lobe (Thanks to the doctors we were never warned!! but that's another vent). After stepping back we believe that he'd had at least one other before this but not a Grandmal one and we'd passed it off as other things. Since he started the Dilantin he's had AT LEAST 4 incidence of either me waking him up in bed or him waking up himself and the bed being wet. I was under the assumption that they were small seizures (as I've never been in the room when it's happened) but then have wondered if it could be a side effect. I had never heard of sleep epilepsy so now I also wonder if THAT could be it. The doctors didn't seem concerned when we told them of these incidences...but then again, they seldom do. I just wondered it anyone else has experienced this with Dilantin or suffer from sleep epilepsy and could give some insight.

gagcas · 06-20-2004, 05:44 PM

hi.

i dont know alot on the subject, but if you go to page 3 of the archives on this board, there are pages on night terrors and sleep disorders that have to do with epilepsy. you might find what you are looking for. hope to have helped. just read through and respond if one catches your eye.

dalesgirl · 06-20-2004, 05:49 PM

I will take a look, thanks.

tkdmom96 · 06-20-2004, 07:11 PM

Hi Dalesgirl,

Did you know that there is a possibility, with scar tissue (depending on where it is located), it could be surgically removed? Have you ever spoken with his doctor about this? Just a thought.

Keep a close eye on him during the day as well. Does he ever mention having "odd" feelings like being light headed, a feeling in his stomach, tingling in his arms or legs, an odd smell or sound? These could be auras that tell when a seizure could be on the horizon. I would also ask about having a VEEG study in the hospital. It is where the patient has EEG electrodes connected and you are in a room that has a video camera in it. When the patient has a seizure, the EEG records and the video captures images. This usually is 2-7 days in length, depending on the info they want/need. The doctors would more than likely remove him from his meds for this. But it is done in the hospital and there are meds available for quick injection, if needed. Our daughter has done this twice now and just recently had surgery to remove the seizure area of her brain. It will be 14 days tomorrow and she is doing very well.

Your husband is a lucky guy to have you by his side, good luck as you look for answers...

Vicki

dalesgirl · 06-20-2004, 07:47 PM

It's funny that you mentioned the surgery thing. The other night when he had another incident we talked for a bit about it. His doctor hasn't mentioned it, a friend of mine had to me. Of course I'm not the one dealing with it but I told him I wasn't real comfortable with having surgery to remove the tissue but of course as with everything I would research it and see if my opinion would be changed.

His one doctor did mention possibly doing a sleep study on him.

Every time he has an incident he feels frustrated and embarrassed. I just try to remind him that although I'm sure they aren't fun they aren't cronic as of now and that if this is all we deal with after his ordeal we're lucky. It doesn't always seem to do the job but he knows we're doing what we can to leviate things.