Delayed side effects from Depakote?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!


Reaction score
My wife has been having all kinds of trouble with Depakote recently. I'll start from the beginning and go from there...

At first, she was sleeping a TON when taking it. She would sleep for 15-16 hours a day and there were many times when she even appeared to be so fatigued that she would literally fall asleep all through the day. It seemed that no matter how much sleep so got, she'd never be rested. Also at this time I noticed that she was having a lot of jerking around in her sleep.

As time went by the SE's seemed to subside. For about 2-3 months she was doing extremely well. Her mood had improved, the side effects were almost non-existent and she was doing very well with control. The only real side effect I noticed was the jerking in her sleep. It wasn't too bad though at this point.

Well the past month or so (6 months on Depakote now) she's took a pretty big turn for the worse. She's once again sleeping all the time. She's falling asleep while watching TV or eating and she spends most of her time on the couch. I've noticed her mood dropping again and her energy levels are horrible. Also the night time twitching has gotten much worse, even happening while she isn't sleeping at times.

On top of all this, she's caught a cold or something this week. She's basically bed-ridden. She did clean the apartment yesterday but it totally exhausted her. She's tired, sore, and slightly depressed almost all the time.

We're going to the neuro on Monday to talk to him about all of this and get her levels checked. I'm really concerned with what's going on right now. For whatever reasons it seemed like these delayed side effects are hitting her really hard. She's even noticed that she's losing more hair.

Another thing we're talking about is having kids. I put in an offer on a house this week and hopefully we will get it. We're wanting to move on with our future and start a family soon, but between the Depakote, which isn't good for pregnancy, and the horrible state she's in right now, it's not happening any time soon.

I'm to the point that I'm convinced she needs to come off this med. It's just not working well for her at all. She hasn't had any t-c's or partials, but the jerking in her sleep and the changes in her energy and mood tell me it's definitely not the right med for her.

Has anyone else seen side effects that pop up later like this? Do these sound like common SE's for Depakote? From what I've read the story sounds pretty similar to others on Depakote and having SE's. Also, are there any good AED's that work for a wide range of seizures and are safe for pregnancy?
What is your wife's dosage? I have been on Depakote ER 1000 mg. for a year now and haven't had big problems like that. I take my entire dosage at night and am able to get up and function just fine in the morning. I haven't had any seizures since starting and no jerking problems. My only side effect has been a slight increase in my liver enzymes but that seems to be resolving itself too.
I am wondering if your wife might be on too high a dose and am glad she's going to get her levels checked. I do know that Depakote isn't a good med for those wanting to get pregnant so I would definitely talk to the neurologist about that too.
Please keep us updated and I hope you can get it figured out.
She takes 500mg/AM and 500mg/PM. Right now she's on Divalporex Sodium DR.

I think something is definitely going on with her meds, so I'm glad we're going to the docs. He needs to know about all of this.

I'm pretty upset myself that he hasn't been more active in checking her levels and with her overall care. Perhaps if he realizes that things aren't going well, he will listen more and be more proactive. If not, we'll be looking elsewhere for a neuro.
perhaps they should try a different drug. I know there are some womean on here that know which drugs are best if you are trying to get pregnant, I not sure what they are
I've never tried Depakote, but I have tried many other meds and have had similar situations. I would only be on certain medication for 4-6 months and that's when the side effects would rear their ugly heads again. But it sounds like your wife is experiencing nocturnal seizures which is making her tired all the time. And sometimes, unfortunately, the medication(s) stop working, so she may need to find something else.

Years ago, I experienced two healthy pregnancies while I was taking Dilantin.

Oh, and btw Darcness, my hats off to you and men like you who take the time to go out of your way to care for your wife and do what you can when you can. My ex never did.
Thanks Cint, that's another thing I was considering, and another reason I think her levels are wacky.

Like you have said, either the medications aren't working as well as I thought (with the myoclonic jerks) or they may be losing overall effectiveness. Whatever the case, I'm glad we're heading to the docs. I just hope he's open to trying a different med.
I've read about a tolerance developing with Depakote, and about extreme fatigue as a side effect. It does sound like it's just not working so definitely your wife's doc needs to re-evaluate.

I think Lamictal and Neurontin are supposed to have good track records with pregnancy.
... She's once again sleeping all the time. She's falling asleep while watching TV or eating and she spends most of her time on the couch. I've noticed her mood dropping again and her energy levels are horrible. ... She's tired, sore, and slightly depressed almost all the time. ... She's even noticed that she's losing more hair.

This is exactly what happened to Stacy when she was on Depakote. It was awful. Things did not improve for her until she weaned off the Depakote.

... Also, are there any good AED's that work for a wide range of seizures and are safe for pregnancy?

All AEDs carry some increased risks for birth defects AFAIK. Please consider contacting the AED Pregnancy Registry when you do decide to start your family.
I have been told (by my Neuro and OB-GYN consultant) That the 'least worrisome' AED for pregnancy is Gabapentin (Neurontin). Also as soon as you start TRYING to get pregnant, your wife should be on 5MG a day of Folic acid from the doctor instead of the usual over-the-counter dose of 5 MICROgrammes. The Depakote really doesn't sound like it's working now, So maybe it's time for a change, for both reasons.
Just saw this post. Ok..I just had a baby recently. When I got pregnant, I was on depakote. I was taking it for over 12 years. When I got married, my neuro asked if we were ever considering having children. We said yes, but not for a few years. He told me to start taking folic acid immediately. That's because in the case of unplanned pregnancy, at least the baby would have some protection from the medication. So I started taking 8 mcg daily several years ago. This July I had my first baby. During the pregnancy, my docs switched me over to Dilantin. That was the med that my neuro and I had chosen several years ago as the med to switch to if I were to get pregnant. We talked to the neuro to see if it was a good choice. He said that there's no such thing as a completely safe medication. It's all a matter of what you are comfortable with as far as possible risks. As of July I have a gorgeous full term baby girl who is 100% healthy. Make sure that you are talking with your neuro about babies when you discuss meds. Believe it or not, some of the meds decrease birth control effectiveness. :)
Top Bottom