Keppra Vs Dilantin?

Concerned with medication side effects, I recently emailed my Neurologist about the difference between the new drug Keppra and Dilantin, this is what he wrote back :

“The dilantin can cause bone thinning in the long run. Rarely, it can also cause numbness in the feet or hands. If you’ve been on the medication before and had no problems, I generally like to stay with what we know works for you. That being said, I think Keppra is an excellent medication and it doesn’t have those sort of side effects that Dilantin has. I also don’t need to check blood tests with Keppra. The potential common side effect are generally sleepiness and moodiness. Dizziness can happen at higher doses.”

Does anyone have anything they’d like to add about this subject? I am considering switching but wanted more feedback especially from those of you who might have experience with Keppra and it’s side effects, if any.

Hi Brian,
Speaking for my husband who had his AVM removed 9/30/08, he was first put on Dilantin, tried to wean him off, had his first seizure Thanksgiving morning, was put back on Dilantin. This drug did make him tired (so we thought, it really may have been the combination of other drugs and getting over the craniotomy). So his neuro put him on Tegretol extended release, it was horrible, he was a zombie, gave him the choice of weaning off and going on another med or no med at all. He chose no med, a month later had a very intense GM seizure. Neuro put him back on Depakote extended release, zombieville once again. The end of June of this year, he told him he could not stand Depakote, weaned him off and he is on Keppra, 3000 mg/day. 1500 mg morning/1500 mg night. Knock on wood, he has done very well on it, very clear headed and no seizures. The day dose does make him sleepy though, we go to the neuro tomorrow and will discuss that with him. We are wondering if he went down to 1000 mg/daytime and stayed on the 1500/mg night would that make a difference in the sleepiness??? But still be protected from the evil monsters???
Keppra is “processed” (that’s not the correct word but can’t think of it right now) through the kidneys whereas the other drugs are through the liver. That is my understanding of why you can’t get a therapeutic level like you can with Dilantin/Tegratol/Depakote and the other seizure meds. That is a draw back (I think) on Keppra as you don’t know if you are over/under medicated??? But it has been wonderful having my husband back and him being able to have a conversation with him instead of so medicated he could barely comprehend what anyone was saying, and not so medicated like the other meds caused him. I think it’s worth a try. What amount is your doc thinking about???
Good luck to you I know it was very upsetting being seizure free for so long then having one. I’m thinking my husband may need to be on seizure meds forever but who knows…
Marie

Hi Marie,

Thanks for the post. I haven’t discussed amounts yet with my doc, I only asked him about side effects because I don’t want to be on something the rest of my life that will cause thinning bones or other nasty side effects, your zombie analogy is familiar, though I’m very cognizant of this and strive to be as alert as possible though I can feel right now that my eyes are drooping. I was very surprised to hear that your husband was weaned off medication so soon after his operation, what I was told when I decided to wean off after 10 years was that I still had a 30% chance of having another seizure. Of course I was willing to take that chance since I had been doing so well. I was also told that anyone who has had brain surgery is susceptible to seizures no matter what, I guess this makes sense but it’s too bad the medications make you so drowsy! I wonder if, when one is on keppra for a certain period of time, the drowsiness will eventually wear off? I know after being on Dilantin for 10 years the first time, I felt perfectly normal. This was a very good post, very helpful and I would like more people to comment on Keppra.

As you may know, Dilantin is more or less the old “stand by” and is likely to be the first thing that people are put on after suffering a seizure. It’s convenient because it is more predictable than some of the anti-seizure meds out there, is inexpensive, and can be given either by IV or orally. In addition to the side-effects that your doctor mentioned, Dilantin can cause problems with your gums, dizziness, insomnia, headaches, muscle twitching, nausea, contipation, liver damage, anemia, swelling of the lips, among others.

I was on Dilantin for several months prior to my surgery and it caused many of the side effects that I have listed above. The doctor had me going in for blood work every few weeks to make sure the dosage was correct. A few months after my surgery, the neurosurgeon started working me off of Dilantin because 1. He does not like keeping patients on Dilantin for long-term use because of the damage it can cause, and 2. He didn’t think I would need it anymore.

well, I ended up having a GM on Christmas Day 2005 and was put in IV Dilantin in the ER. The stuff caused a chemical burn from the site of the IV all the way to my armpit. My neurosurgeon placed me back on Dilantin, but sent me to meet with an Epileptologist to discuss other options. I went through 3-4 different types (including Depakote) and ultimately ended up on 3,000mg of Keppra. I have been on Keppra now for almost 4 years and have been able to get down to 2,000mg. The Keppra seems every bit as effective as the Dilantin, and while it does have side effects, it is not nearly as bad as Dilantin. I would say that the biggest side effects of Keppra for me are difficulty sleeping and occassional dizziness, but mostly in hot weather. Once in a great while, mostly under stress and/or significant lack of sleep, I deal with Partial Onset Seizures, which the Epileptologist warned me about before I even started Dilantin. He said that Keppra will not stop ALL seizure activity, but it will minimize the seizure once it has begun. For example, if I were to have a GM coming on, it would not fully develop, but it would leave me me feeling pretty lousy for a while. That being said, “lousy” is better than recovering from a GM! But regarding Keppra side effects, I would have to say that the most significant, ongoing side effect is a general “ho-hum” type feeling. It’s not that I don’t care about things, I’m just not in the mood to give a big reaction to it.

In general, Keppra would be my personal suggestion. Depending on your insurance, it can be WAY more expensive, but there is a generic equivalent of Keppra that cam eout not too long ago.

Hi Brian,
I had AVM/anneurysm bleed/removal in nov 2004 and took triptan maxalt when migraines worsened a yr ago which caused 1st parital onset seizure in 2008 then, refusing to take meds from a medicine-caused seizure, i had a 2nd partial-onset seizure in mar 2009. been on keppra generic since then at 750 2XD and in six months, they’ll probably lower the dose a little (I’m petite not for any other reason). I refused to go on depokote or another migraine/seizure combo med after the 1st seizure since but went on immediately post-2nd one since as the neuro had warned, once u have a seizure, you’re threshold is lowered. keppra generic was used b/c i had no cognitive deficits post-bleed and REALLY wanted to keep it that way. I always think it helps to get a 2nd neuro opinion, it really helped me. I’ve actually gotten 3 opinions to date, and it’s given me a MUCH fuller view of my options. I think i was on dilantin for 2-wks post-surgery, but since it was post surgery, i was woozy and miserable, but the causes were many :-)My keppra experience: So far, the only side effect is for about an hour after taking a dose, i feel a v. slight naseau/light headed that is very moderate. It’s enough that I don’t like to do anything for that hour (i’ll walk/drive before or after the post +1 hr time). So, keppra (generic) works w/ tolerable side effect for me. does nothing for migraines, so may have to switch to depokote if i want both treated. since keppra is tolerable and I’m doing lifestyle stuff to get the migraines back to occasional. For me, keppra generic has NO zombie-like drowsy affect, and i like that they don’t check my liver like they would monitor depokote. The keppra generic is much cheaper than brand. The neuro wanted me to stay with brand, but since i started with generic, i’m staying with it since there is a slight difference in formulations and i’m happy that it’s only a mild side effect.

Good luck, with the brain no decision is ever simple but there are many options. There is good news, since there’s more options today than ever before and there’s new research and studies. I would definitely consider keppra or keppra generic. I have had both my primary and physiatrist seem very surprised that I’m on anti-seizure medicine and not hating the side effects. Worth checking out. Best of luck in your journey!

Hi Brian,

I had a brain hemorrhage in 1982 followed by brain surgery. Immediately after the surgery the neurosurgeon put me on Prominal and Luminal, 2 old anti-epileptic drugs, because of the chance of seizures. It was only 5 years later - when the doctors told me to wean off - that I had my first seizure (GM). After this seizure I started taking Dilantin. This medicine can cause problems with the gums, dizziness, insomnia, headaches, muscle twitching, nausea, constipation, liver damage, as mentioned earlier. Another disadvantage of Dilantin is that you have to go the doctor approx. every 10 weeks for a blood test (to measure the level). If the level is low (below 10) there is a chance that you are going to have a seizure and if it is high (above 20) you are “toxic” (dizzy, etc).

In 2006 I suffered a series of seizures. After 20 years taking Dilantin it stopped working. The epileptologist switched me to Keppra. Especially during the first few months I noticed some side effects (cranky, concentration difficulties, etc. ), but overall, I’m much more lucid and my wife appreciates that very much.

I wish you good luck with your decision. Based on my experience I would definitely recommend keppra (or keppra generic).

Jan

I had a very bad reaction to Dilantin, but do so much better on Keppra. I think probably everyone is differnent, but I have no problam at all with Keppra.

Oh, by the way, I had an angiogram last week and they found that my AVM was gone! yehhhhh!
But I will still have to stay on my Keppra because I had a Left temporal craniotomy on 12/26/07. So I guess my Doctor wants me to stay on Keppra. How long, I don’t now, maybe forever.

Wow, these are all really good responses and very helpful in my decision. Louisa, good for you! I also had my AVM removed back in 1994 by craniotomy and it took quite a while to get the medication right. Like I said I ended up staying on Dilantin for a good 10 years or so after my previous seizure then I decided I wanted to try my luck off of it. I had a good 3 years with no problems but after this, I don’t think I want to do it again so I’m deciding and leaning towards Keppra for the rest of my life maybe. I know there will be an adjustment period, as with any drug, but hopefully it will be okay for me. I’m tired of being tired… and ready to sleep by 9pm. My doctor is willing to switch me, I just need to tell him.