Wokstar - Epilepsy Message Board

dalesgirl · 06-20-2004, 06:19 PM

I saw a post you posted on talking about sleep seizures and how you seem to only have them at night while sleeping. Has your doctor confirmed or at least agreed with you? It seems that's what is happening to my husband but his doctors don't seem concerned.

The first seizure that was witnessed was in March and was a grandmal seizure. After looking back we're convinced he'd had at least one other one that obviously had thrashing because it seems his arm and back hit the side of the nightstand. Since then we've had several episodes of wetting the bed. Most of the time he sleeps right through it and I have to wake him up when I go to bed. After we notice it I always ask how he feels and he just says tired. We've told his doctors about them and they don't seem concerned and have NEVER mentioned sleep epilepsy even after I've made comments that it's odd that they only happen in bed.

wokstar · 06-21-2004, 05:25 PM

Hey Dalesgirl,

It's great that you have found this message board, and I am very glad that you saw my thread regarding sleep seizures. Glad it can be of help to people.

Yes, I do only get seizures while I am sleeping, and my neurologist has agreed/confirmed with this. My doctor has also given me the okay to go and get my license and is confident that I won't get a seizure while driving, due to my long history (about 8 years) of only having seizures while sleeping. It is quite possible for people with epilepsy to only have seizures while sleeping, and it is not uncommon.

My seizures seem to be mostly triggered by lack of sleep. Do you find this is like your husband as well?

I too wet the bed when I have a seizure, and I don't remember it at all! I"ll just wake up with the bed wet, and I am slightly sleepy. If I have a Grand mal seizure I thrash around and sometimes fall out of bed, though i never remember it at all either. I"ll wake up a couple of hours later...then I'm notified by a family member that I had a grand mal. (if they happened to have heard me). If no family member has heard or scene me, and I wake up with a terrible headache, feel dizzy/nauseated, and very tired, then I usually suspect that I have had a seizure (most likely grand mal). These are usually my symptoms after having one.

I have found a very helpful article on www.e-epilepsy.org.uk Go to that website and enter "sleep" in the search. Then chose the artcile "Epilepsy and sleep by: M C Walker, S M Sisodiya Institute of Neurology. This article gives detailed information about how sleep patterns can affect the brain. It is very interesting.

Any other questions at all? That is too bad that the doctors have dismissed this....how silly! I suggest requesting and sleep deprived EEG. Do you think that would be possible? This is how we determined that I was getting seizures. My brain waves were measured while I lay on a table....I remember just lying on the table and the nurse saying. "okay, close your eyes"...then later "Alright, time to get up now". My mom who was in the room commented "you just had a seizure". And wow!! I didn't even realize...it just felt like I had been resting for 30 min or so. But sure enough, my brain waves were ALL ACROSS the pages during my seizure activity.

I hope this was helpful...tell me what you think about the article too..
Wishing you and your husband well

dalesgirl · 06-23-2004, 05:38 PM

Thanks for responding. I had actually missed this. I will definately check out that site. I asked my husband about the sleep deprived thing and he doesn't know..LOL.
We thought before I witnessed the seizure in March that some days that he got up he just didn't feel good and it went along with his other problems and he was just having a bad day. A few weeks prior to the grandmal seizure he had some spots on this arm and bad on one side that I questioned him about and asked him what he fell into or hit. He told me he didn't know. I thought it was odd but he was having a lot of balance problems around that time too and just thought maybe it was like when I run into something and get a bruise and don't remember why. His arm had obviously bled but I didn't give it a second thought until he had the grandmal. I mentioned that to the doctor and they did agree that it probably was another one but that was the family doctor (not the ER doctor).

We had asked the ER doctor some questions that day and he said that you NEVER remember your seizures which I have found research to dispute that so he didnt' seem too 'up' on the subject. He had uncontrollable jerking that we were questioning but know we're pretty sure that has to do with the nerve and spinal cord damage. The last time he saw his family doctor there had been 2-3 incidences of the bed wetting and that's when he said they could do a sleep study but blew off that he thought they were seizures. The next week he saw his neurologist and we asked the same thing and he said he didnt' think that's what it was either. There were two other incidences just last week.

Before he does the sleep study he's going to have to wait until his Medicare kicks in. He doesn't have insurance as of now because as the state has said..he doesn't use it enough but we're trying to change that because he's had 2 doctors and 2 labs this month and probably at least one more lab this month. My husband is just thankfull that if this is seizure activity it's not like the grandmal one. He's said he'd rather be paralyzed then feel like that again. He needed help walking around the house for like 2 days and his memory was shot for about 4 days. With him having the neck injury he had the seizure had contracted all those muscles and left him very sore for quite a while.

dalesgirl · 06-24-2004, 08:18 PM

I got to thinking of something last night. Someone asked me about if my husband had trouble sleeping or stressed or whatever before an 'incident'. I think there might be something there. He had them Friday and Saturday night. Friday he'd called the doctor and said he didn't feel well and they did labs and his dilantin was 22. The doctor called that night and told him not to take anymore the rest of Friday and none Saturday and start a new routine on Sunday. With the research I've looked into I wonder if the stress of him worrying about that could of been what caused them. Every time it's happened it happens two nights in a row then doesn't happen for a while.

wokstar · 06-25-2004, 10:22 AM

hi,

I have heard that stress can sometimes trigger seizures.....maybe because he is stressed he isn' sleeping well and therefore causing seizures. A combination of the two? I haven't heard that much of people's stress causing seizures....but really, all cases are different.

by the way...when is his EEG/sleep study scheduled for? (is there a scheduled one?) Will he perhaps get an MRI? (I live in canada and to get an MRI we are put on a waitings list...for perhaps at least 3 months!!). luckly mine was done 7 years ago (wasn't as big of a problem, and I got it due to a cancellation).

wishing you well