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.

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.

I will take a look, thanks.

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

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.

dalesgirl,

he is verY luck to have you next to him to be by his side. this all can be a very hard ordeal to go through by yourself. i thank god for this board everyday because i have support from people i dont even know. tdkmom96's post lately have been all about her daughter katies ordeal and as she was saying up above she just had surgery. even though this may be the begining for you and him, maybe you could read through them if you hvant already. they are very informative. even back on page 2, 3, 4, etc. they are all about her surgury from the begining. and like vicki said, if your not comfortable with what this neuro is saying or doing then find another one. it would be to his benifit. welcome to the board and im sure wqe will be hearing from you again.

Thanks. I've enjoyed reading this board too. Although sometimes I've wondered if I'm not a nut case..LOL It seems there are a lot of subjects here that we've dealt with. This is the one of them though that I'm not completely 'up' on.

Wetting the bed is not a side effect of Dilantin that I've ever heard of.

Hi Dalesgirl,

Wetting the bed or loss of bladder/bowl can be a sign of seizure activity. Does he have sores/bite marks on the inside of his mouth the next morning, unexplained stiffness in his muscles, headache that he didn't go to bed with. These are also signs of seizures while sleeping, esp. if he has 2 or more together.

If you haven't, please start a journal to document each time this happens and what other signs you may see. You also may want to add notes on stress, physical activity, sleep the night before as all these things can trigger seizures.

Keep us posted.

Lisa and kids

Hi Dalesgirl,

Wetting the bed or loss of bladder/bowl can be a sign of seizure activity. Does he have sores/bite marks on the inside of his mouth the next morning, unexplained stiffness in his muscles, headache that he didn't go to bed with. These are also signs of seizures while sleeping, esp. if he has 2 or more together.

If you haven't, please start a journal to document each time this happens and what other signs you may see. You also may want to add notes on stress, physical activity, sleep the night before as all these things can trigger seizures.

Keep us posted.

Lisa and kids


I have been documenting when he wakes up with the bed wet and I'm constantly asking him afterwards if he feels ok. He says he does but he's tired.. which is understandable since he just woke up. I suspect that they are small seizures and we are just more aware of it now because we KNOW to be. Until he had his grandmal seizure if he woke up and had a bad day (had noticed any bed wetting, but he seems to do it early on and I work a 3rd shift schedule) we passed it off to his other problems from his accident.

Hi dalesgirl,

Keep up the good work with documenting and offering your love and support. He might start to feel like TOO much the center of attention, being asked and scrutinized all of the time, but it is very important information to keep. Our daughter would ask, "how much longer do we have to keep track of this stuff? Why do you always have to ask me EVERY day how I was?" Sometimes I felt it added more stress to the day by doing so. It was always our focus of attention. But I told her the doctors (and us) needed the info, and who would have known how important it was, until a year ago. The info came under serious consideration and gave our Epi the insight she was looking for, as far as seizure behavior/location in the brain.

I would really consider the sleep study. It really isn't difficult, just a little time consuming. You could schedule it around a weekend, so maybe loss of time from work wouldn't be an issue. Usually someone needs to be with the patient 24/7 to push an event button, unless they wouldn't need to do that with your husband for some reason. It could give some definate insight to his seizures.

Good luck as you continue to move through this,
Vicki

Thanks. I really do think he is considering the sleep study.

I know what you mean about documenting and them getting frustrated. He had so many problems after his accident that we had to document everything including bladder and bowel. He was 'upset' with me today because I still keep a record of bowel because he's had some problems. He thinks if he goes two days in a row everything is fine and I can stop. He forgets that after those two days there will be anywhere from 5-10 days in between. Then of course when he goes and there's a problem he'll ask me when he went last... WELL DUH!! You told me to stop documenting...LOL

The old "dam*** if you do, and dam*** if you don't" rule! Don't you love it? It seems to apply everywhere! LOL!

p.s. I *'d the word so I don't offend or get in trouble... :nono:

Vicki

You're right about that rule! One minute I'm too anal about something and the next he's upset I don't have the answer to something.

My strongest seizure triggers are REM, the last stage of the sleep cycle, and waking up. It is the only time I still have seizures, so I can drive now. I had a sleep study one time and the doctor found out I was having small seizures EVERY TIME I started that stage.

I had a rubber sheet for years. I almost allways loose contenence when I have grand mall seizures, so doing it in bed was always better than in public! Fortunatly, I rarly have generalized seizures any more. I do still wake up with a wet bed every year or two. Neurontin is the most effective drug I have ever taken for those seizures (I currently take Tegratol and Lamictal too).

I know it is tramatic because it is new. Eventualy that will fade. I got where I could laugh about it, and stuff like throwing my plate on the floor in restraunts!

My strongest seizure triggers are REM, the last stage of the sleep cycle, and waking up. It is the only time I still have seizures, so I can drive now. I had a sleep study one time and the doctor found out I was having small seizures EVERY TIME I started that stage.

I had a rubber sheet for years. I almost allways loose contenence when I have grand mall seizures, so doing it in bed was always better than in public! Fortunatly, I rarly have generalized seizures any more. I do still wake up with a wet bed every year or two. Neurontin is the most effective drug I have ever taken for those seizures (I currently take Tegratol and Lamictal too).

I know it is tramatic because it is new. Eventualy that will fade. I got where I could laugh about it, and stuff like throwing my plate on the floor in restraunts!

Hey janet! welcome to the bored! I usually only get seizures in my sleep...but who knows how many i get. haha, i can totally relate to the rubber sheets...i still have them. though the meds have helped eliminate the problem pretty much. I take lamictal too! (I took tegretol, but was allergic). Do you have any side effects due to your lamictal? (I experience insomnia from mine). Though I solely take lamictal (right before i go to bed).

Glad to know that you are comfortable with your epilepsy...so am i. one of my favorite subjects, haha. :D

Well, I'm not sure if it's seizures or not..LOL Last night was the first night that I was in bed with my husband and he woke up wet. Either he didn't thrash or I didn't feel it. Although he did say that not long before bed he wasn't feeling well and was feeling sick in his stomach. He passed it off to being in a hot tub even though it wasn't really hot and he wasn't in for very long. I told him some here have said they have 'signs' or feel the 'aura' before they have one. We're documenting so we'll have to see what the doctors say I guess.

Hi Dalesgirl,

Sounds like a possible aura...everyone has them at different times, not always RIGHT before a seizure. Can be a "lead" up to a seizure. We were told by our Epi and old Neurologist, not to have Katie use hot tubs. Heats the body and blood up too much, if I remember correctly. I also thought I remembered something about not above 100 degrees.

Keep up the documenting, your doing the right things. And look into that sleep study, he seems to have alot of activity at night that should be looked at.

Take it easy,

Vicki

That's interesting about the hot tub... I pushed for him to go in it because I thought it would help him with his muscles and and his neck pain. I guess luckily it wasn't very hot. The kids played with the temp earlier in the day and we didn't know it so when we wanted to get in for a bit it wasn't as warm as it 'should' of been.

Thanks... I'll remember that