Don't know what to do, need advice...

[darcness]

Well my wife is going through the transition from Depakote to Keppra and things have been fairly uneventful so far, thankfully.

The Keppra already seems to better then the Depakote. The jerking in her sleep has been much less and she's been feeling better emotionally. There's been a few concerning episodes, but I suppose this is to be expected coming off a med. So the switch is going well considering.

However, she is still having days were I know things just aren't right. She doesn't realize it, but I certainly do. Last night was a good night for her. She was alert, bubbly, and acting like her normal self. Of course she had gotten a really good rest the previous night so that's a large contributing factor.

Today when I woke up around noon she was on the couch, sleeping. She woke up and right away I knew she was in for "one of those days". These days don't happen very often, but certainly enough to cause me concern. It's like she turns into a completely different person. She's tired, falls asleep, and then when I wake her up and tell her to lay down she denies being asleep even though it's very clear that she was. She get's moody and just spends the day sitting on the couch half awake, half asleep.

It's frustrating to me because she needs to get rest when she's like this, but she fights it so much. For the life of me I can't understand it. At this point I've given up even trying to argue with her about it because all it does is cause just that, an argument.

Is there anything I can do when she's like this? I'm completely at a loss myself as of what to do with myself. I feel like I shouldn't leave because I don't want her to be alone, but at the same time I want to get out of the house because being here just makes me irritated when she's like this.

On one hand I feel selfish for worrying about myself, but on the other hand I am worried about her. It sucks. Especially since there is no logic behind all of this.

Any ideas on what could be causing her to have days like this, or what I can/should do to cope with these days or help her out would be great.

 

[Rae1889]

When I am in that state *half awake, half asleep, but fully being a PITA* Chad just brings me a blanket, and sits next to me, turns on a movie, and I WILL fall asleep, usually with my head in his lap, while he watches the movie.

Gets his mind off me, and gets me to sleep. *put something on she has already seen, or something she doesnt like too much. For me, he puts on Robocop, or Rocky or Tremors. Cant stand them as they are boring!* If she isnt interested in the movie, and can get some cuddles out of you, then try that. Next time you ask her to rest and she says no, just ask if you two can sit and watch a movie and cuddle *tell her that part or she wont buy it*

Go get a blanket, make yourself comfy, then ask if she wants to share the blanket. Then put your arm around her, tell her she can put her head on your lap, and then press play. It will happen on its own from there.

Hope that helps!

 

[Nakamova]

Can someone else come over to be with her or is that not an option? Sometimes a little cabin fever can make things hard on both of you.

It may also be the case that her sleep patterns will even out once she's completely off the Depakote, and she won't be knocked out by having two AEDs in her system at once.

 

[darcness]

Thanks Rae, I suppose it's worth a shot.

The thing is that she is so figgity that she usually won't stay sleeping for long, or she wants to get up and get food, something to drink, etc. Like I said, it's like she tries so hard to fight falling asleep, but all it does is make her more tired.

I just can't understand for the life of me why this happens. She will sleep really well for a night and then wants to stay up all night the next day. Then inevitably this happens. I keep trying to tell her she needs a somewhat normal sleep schedule but it's falling on deaf ears.

 

[darcness]

Can someone else come over to be with her or is that not an option? Sometimes a little cabin fever can make things hard on both of you.

It may also be the case that her sleep patterns will even out once she's completely off the Depakote, and she won't be knocked out by having two AEDs in her system at once.

I suppose I could see if her mom would come over, but I think I would still feel guilty for leaving. I don't want to feel like I'm running away if that makes any sense at all...

She is now fully off the Depakote. Has been for a about a week. I know she's been having some withdraws because her anxiety has been up a bit, but it's coinciding with her TOM which always is a troublesome time for her.

These days have been happening ever since she started on AED's as far as I can recall.

 

[Rae1889]

have you looked into talking with her neurologist to try some diets or alternative methods of control?

If you can get to where she is now seizure wise or better, with using diet or neurofeedback (also just learned of MRS, magnetic resonance stimulation.) It might help with the moodiness and remove the med side effects.

Have a chat with RobinN or joan. They both have really good ideas. I am talking to joan recently as I want to try the MAD diet, cuz i think my meds are making this worse than it should be.

 

[occb]

Good suggestion with the movie Rae. That's along the lines of what I do too, but it doesn't always work.

darcness -- I hate to say it, but just let her do what she wants. Way easier said than done, I know from experience, but it's all you can do, aside from talking to her about how she's feeling, and asking her how she wants to tackle the things she's dealing with. It's not like she's incapable of making decisions, she's making them, but they're just not the decisions you think she should make.

The more you push someone to do something, the less they want to do it, and they'll eventually resent you for nagging, and you'll resent her for not listening. So it's better to let her figure it out for herself. When you do, she'll eventually ask you for your opinion, and that's when she'll listen.

 

[darcness]

I've talked to her about making some changes but she's so darn stubborn. She has agreed that magnesium would be a good idea so I'm going to get some that Robin suggested to me for her. Also I'm sure Vitamin B6 wouldn't hurt.

I just wish I knew what was going on in that head of hers. Since I'm not the one with E, it's hard to know. I was hoping maybe some one could give me a bit of insight into it. Also, does it sound like a fairly common thing for some of you?

As of right now she's sleeping, albeit with her Taco Bell Quesadilla sitting on her lap. Sheesh...

I remember a long while ago we went to the ER when she was like this. Of course it was a waste of a trip. More fluids, observation, and then send us home, as usual.

It's just so frustrating and at the same time depressing. I hate seeing her like this, but I feel helpless to do anything.

 

[Cint]

I suppose I could see if her mom would come over, but I think I would still feel guilty for leaving. I don't want to feel like I'm running away if that makes any sense at all...

She is now fully off the Depakote. Has been for a about a week. I know she's been having some withdraws because her anxiety has been up a bit, but it's coinciding with her TOM which always is a troublesome time for her.

These days have been happening ever since she started on AED's as far as I can recall.

Maybe because it is that TOM, it is causing her to be irritable, depressed, tired, etc. And with Keppra, for some it can make depression and rage worse. For some women with epilepsy, that TOM makes the depression much worse. Maybe she suffers from PMDD. Sometimes that lasts for days after she starts her period.
No need for you to feel guilty if you need a break, you're not running away. You just need a breather.

 

[darcness]

Well I decided to stick around and I'm glad I did. Something just isn't right today. I honestly think she may have had nocturnal seizure and now she's really tired and out of it. I just did what Rae suggested and it really did help. I just went out and cuddled with her for a while and kept an eye on her. Makes me glad I stuck around because I got to see some various things I've not noticed before.

When she was sleeping today she was having lots of movements again. That hasn't happened for a while. Also she makes noises and if I watch her face while all the movements are going on, her mouth is moving as well. Sometimes her eyes even move. They don't open, but they move about. Definitely looks like nocturnal seizures to me.

To those who do have nocturnal seizures, how do you get rest and then function after? It seems that she will sleep for an hour, wake up, be completely out of it, and then eventually nod off to sleep again. It's very strange.

 

[Meetz1064]

Nocturnal seizures

DON'T allow me to get ANY rest until they're done and over with, and then........ and only then can I hope to get some sleep. And trust me, I have my fair share....

 

[BuckeyeFan]

You are on the right track. Keep trusting your instincts. You knew enough to watch her and look what you learned. Keep up the good job. Continue to be her hero.

That said, here are a couple of more suggestions. Ask her to start keeping a seizure diary. Not just a log of seizures she recognizes, but a history of how she feels several times a day. This will establish a history for her doctor to help treat her.

It will also help her see herself. She may learn to recognize these days that you describe and learn to deal with them better, at least for her own peace of mind, if not yet yours. There is so much to learn from patterns for many people. Also, make sure that she can ask you questions to fill in the blanks. Obviously she doesn't realize she had this recent activity.

Be aware that the Keppra may cause some emotional issues. I was on it for 5 years and it could really give me a short fuse at times. It is SO important that you realize that is the Keppra talking and NOT her. From hearing everything else you say, I think you will do fine with that, but don't be afraid to leave yourself little reminders. Don't get upset with a side effect. Go with the B6, but not too much, because you can get too much. My best solution for the Keppra emotions was to make sure I released them on something inanimate, i.e. exercize, yelling at politicians or sports on the TV, gardening, etc...

 

[BuckeyeFan]

Rae's idea is a very good one as well. In fact, that is a good suggestion for any relationship. Very mature suggestion Rae.

The other thing I wanted to tell you is to be sure to have some time to yourself. I feel that is important in any relationship, but even more so when the stress of any medical condition is added. You need to be away once in awhile, so that you are truely with her the rest of the time.

Good Luck!!:rock:

 

[darcness]

Well we ended up spending the night together, and I slept with her out on the couch. It ended up being a much better night then I expected to be honest. I laid with her and we both fell asleep on the couch. She's pretty warn out today too, I'm sure from all the crazy stuff going on in her sleep yesterday.

I did get out of the house today and played some cards with friends. It was good getting out and I'm having a pretty good day. I just knew I needed to be here for her yesterday.

Funny how those things work.

 

[Nakamova]

I'm glad it worked out. I hope her seizures respond to the Keppra, and you both get some better sleep.

 

[darcness]

She's still sleeping pretty soundly. I woke her up to give her a kiss and tell her I love her, then told her to go back to sleep if she wanted.

Definitely think today is a recovery day for her. I'm sure she'll be a bit sore when she does wake up. That muscle twitching certainly has to give your body a work out.

 

[marion]

Sounds to me like you're doing everything you can for her Darcness. It's good you got out for a while, and I hope you won't feel guilty about taking some time for yourself. Like others have said, to continue taking such good care of her, it's important to take care of yourself too.