Dilantin vs. Keppra

So after almost ten years on Dilantin my Doc suggested switching to Keppra. He warned of some pretty scarey side effects. Not sure if I’m interested in making the switch. Any comments out there?
Thanks, Tom

Hi Tom
Dilantin never controlled my seizures and after a few different medications I am now on Tegreto and Keppra. I have been taking Keppra for approx 5 years. I don’t know what side effects your doctor warned you of but the only side effect I seem to have is tiredness. Of course I do have other things like vertigo, memory problems but they think this is caused by my AVM. Does the Dilantin control your seizures? Keppra and Tegretol combination is the only thing that seems to control mine.

Hi Tom,

My husband switched to Keppra after about 20 years on Dilantin. The reason was that he had 2 seizures while he was in the proper blood-level range for Dilantin.

We read about the possibility of scary side effects, too, so I was careful to make sure he was never alone for the first 6 weeks on Keppra.

He’s been seizure-free for all 4 years on Keppra, and he says he feels more awake.

The doctor mentioned that Dilantin’s side effects can emerge over the long term, so Dilantin may not be as safe as it seems either.

You’ll hear from people who have had bad experiences with Keppra, too. As far as I know, there’s no way to predict your risk, so I would say the important thing is to make sure you make arrangements to protect yourself while you’re tapering off Dilantin and starting Keppra–make sure the people you spend time with know the situation, especially.

Hi Tom,

My neurologist started me out on Dilantin and after about 6-7 months started trying to find an alternate. I tried out about 3-4 different meds before ending up taking Keppra, which I have now been on for about 4 years. The reason for the switch? While Keppra has some potentially significant side effects, it doesn’t have any more than any other anti-convusant medications out there, but Dilantin can cause some life-long damage to your body… Namely things like liver and kidney damage, damage to your teeth and gums, etc. This is part of the reason why most doctors will track Dilantin levels with regular blood tests. I was having bloodwork done every few weeks while I was on Dilantin just to make sure I was not taking more than abssolutely necessary.

Some of the notable side effects that are common from taking Keppra are things like depression, fits of rage, and so on. But like I said, I have been on high doses (2,000-3,000mg) of Keppra for a few years now and have never come close to committing suicide, rejecting friends and family, putting my fist through the wall or anything like that. I do get frustrated, angry, apathetic and so on, but it’s not like it is a 24/7 thing. As with any medication, it will take some time to get adjusted to the physical side effects, but most of them will pass.

I am taking levetiracetam and don’t really have any adverse side effects. I have been taking it for 3 months with no problems. But I never had a seizure to begin with…they only gave it as a precaution following my avm bleed and craniotomy

Thanks for the fast response. I never had any heavy seizures. My left side would get numb from time to time since I was a kid. After days of testing when i was around 13 or so they found nothing. I dealt with it until the year 2000 when the numbness didnt go away and everything started to taste funny. I had proton beam radio surgery which appeared to be a sucess but then they told me a had to take Dilantin for the rest of my life.
Last week the Doc tells me he is worried about the long term efects of the drug on bone density and the effects on the cerabelum(sp)?
So I get a bone density test and he tells me I’m developing osteopenia in my left hip and lower back. I’m taking more vitamins. The Keppra stuff scares the hell out of me.

Lee Ann said:

Hi Tom
Dilantin never controlled my seizures and after a few different medications I am now on Tegreto and Keppra. I have been taking Keppra for approx 5 years. I don’t know what side effects your doctor warned you of but the only side effect I seem to have is tiredness. Of course I do have other things like vertigo, memory problems but they think this is caused by my AVM. Does the Dilantin control your seizures? Keppra and Tegretol combination is the only thing that seems to control mine.

I have my Dilantin level checked every 90 days. I’m taking 500 mlg a day, 200 in the morning and 300 after dinner. No big deal. Left side still tingles but I can deal with it. The Keppra side effects sound too scary to me.

Jake M said:

Hi Tom,

My neurologist started me out on Dilantin and after about 6-7 months started trying to find an alternate. I tried out about 3-4 different meds before ending up taking Keppra, which I have now been on for about 4 years. The reason for the switch? While Keppra has some potentially significant side effects, it doesn’t have any more than any other anti-convusant medications out there, but Dilantin can cause some life-long damage to your body… Namely things like liver and kidney damage, damage to your teeth and gums, etc. This is part of the reason why most doctors will track Dilantin levels with regular blood tests. I was having bloodwork done every few weeks while I was on Dilantin just to make sure I was not taking more than abssolutely necessary.

Some of the notable side effects that are common from taking Keppra are things like depression, fits of rage, and so on. But like I said, I have been on high doses (2,000-3,000mg) of Keppra for a few years now and have never come close to committing suicide, rejecting friends and family, putting my fist through the wall or anything like that. I do get frustrated, angry, apathetic and so on, but it’s not like it is a 24/7 thing. As with any medication, it will take some time to get adjusted to the physical side effects, but most of them will pass.

I only had radio surgery, proton beam. Everyone I went to said no cuting. I was happy when I heard that. The long term effects of Dilantin I think I can deal with. The Keppra stuff sounds nasty.

mary kate said:

I am taking levetiracetam and don’t really have any adverse side effects. I have been taking it for 3 months with no problems. But I never had a seizure to begin with…they only gave it as a precaution following my avm bleed and craniotomy

Doc is concerned about Dilantin’s long term effect on bone density and effects on the cerabellum(sp).

Jake M said:

Hi Tom,

My neurologist started me out on Dilantin and after about 6-7 months started trying to find an alternate. I tried out about 3-4 different meds before ending up taking Keppra, which I have now been on for about 4 years. The reason for the switch? While Keppra has some potentially significant side effects, it doesn’t have any more than any other anti-convusant medications out there, but Dilantin can cause some life-long damage to your body… Namely things like liver and kidney damage, damage to your teeth and gums, etc. This is part of the reason why most doctors will track Dilantin levels with regular blood tests. I was having bloodwork done every few weeks while I was on Dilantin just to make sure I was not taking more than abssolutely necessary.

Some of the notable side effects that are common from taking Keppra are things like depression, fits of rage, and so on. But like I said, I have been on high doses (2,000-3,000mg) of Keppra for a few years now and have never come close to committing suicide, rejecting friends and family, putting my fist through the wall or anything like that. I do get frustrated, angry, apathetic and so on, but it’s not like it is a 24/7 thing. As with any medication, it will take some time to get adjusted to the physical side effects, but most of them will pass.

Thanks for the response… I havent had any issues with the Dilabtin. I think I’m going to push back and so no thanks. Need to talk to my regular Doc. Thanks again

JH said:

Hi Tom,

My husband switched to Keppra after about 20 years on Dilantin. The reason was that he had 2 seizures while he was in the proper blood-level range for Dilantin.

We read about the possibility of scary side effects, too, so I was careful to make sure he was never alone for the first 6 weeks on Keppra.

He’s been seizure-free for all 4 years on Keppra, and he says he feels more awake.

The doctor mentioned that Dilantin’s side effects can emerge over the long term, so Dilantin may not be as safe as it seems either.

You’ll hear from people who have had bad experiences with Keppra, too. As far as I know, there’s no way to predict your risk, so I would say the important thing is to make sure you make arrangements to protect yourself while you’re tapering off Dilantin and starting Keppra–make sure the people you spend time with know the situation, especially.

I’m not having seizures but he is concerned about Dilantin’s effects on bone density and the cerrabellum(sp). I’m glad to hear thet the Keppra is working for you but when I read more about it I think I’m going to stick with what i have. Thanks for the response and good luck.

Lee Ann said:

Hi Tom
Dilantin never controlled my seizures and after a few different medications I am now on Tegreto and Keppra. I have been taking Keppra for approx 5 years. I don’t know what side effects your doctor warned you of but the only side effect I seem to have is tiredness. Of course I do have other things like vertigo, memory problems but they think this is caused by my AVM. Does the Dilantin control your seizures? Keppra and Tegretol combination is the only thing that seems to control mine.

I switched from Dilantin to Keppra as was worried about Dilantin side effects. I believe the dilantin worked better however.

I've been on Keppra for some time now coupled with topamax. I was always tired of course, memory issues, lack of appettite,ect. my neurologist and I after discussing it thought it would be a good idea to ween off the topamax and go on a higher dose of keppra (1000 mg 2x a day now) He thought maybe my memory issues were due to the topamax along with not eating. since the change i've been struggling to control my temper, and lash out a lot, and my knees are absolutley killing me! I had knee pain before but not to this extent. also the anger problems were there but i was more aware and able to bite my tongue. does anyone else have similiar problems, I go back soon to see him just curious to see if these 2 side effects are normal. I see a lot of people say deppression, but not Rage.