Dilantin to Keppra Saga Begins

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Gamecocks80

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Found this forum while searching for info on transitioning from Dilantin to Keppra. I read a number of posts and was ready to give it a try until I went to pick up the prescription this afternoon. In addition to serious sticker shock, the pharmacist was not very encouraging. I could tell he didn't know a great deal about the drug, but seemed very concerned. Some background...I started having Grand Mal seizures at age 9 which continued approximately every 12 to 18 months until I was 21 (when I gave up the college social scene). I thought I had been relatively seizure free for 30 years, but a recent EEG showed otherwise. Those little lapses in concentration that I considered normal were not. I have taken 200-300mg of Dilantin for about 40 years. The doctors preferred 300, but I've always found it to have significant side effects at that level. So I would go back to 200. My neurologist put me back on 300mg. Not fun! Making a presentation to your CEO with the words coming out in reverse order was frustrating. I went back to 200. Now that I'm more attuned to those lapses in concentration, I know I need more than the 200, so he's switching me to Keppra XR 1000mg/day. Anyone out there weened yourself off of Dilantin after taking it for several years? My neurologist went from stop after a few days to take if for two weeks then stop. The pharmacist and I are not comfortable with that. He suggested taking the full 30 day supply but slowing weening off of it by taking one then slowing increasing the time before I take another. Any thoughts? I don't want another Grand Mal seizure. I know many of you have much more serious conditions, but I'm sure you'll agree one seizure is too many. Thanks for you assistance.
 
Are you tapering onto the Keppra at the same time that you're going off the Dilantin? That may make a difference for the timing. Keppra aside, I'd say wean yourself off the Dilantin over the 30 days, or longer even -- it can't hurt you, and may actually help prevent a seizure from gojng off too quickly. I was in a similar situation on the Dilantin, at a 200mg dose. The first time I was going to taper off my neurologist had me stop cold turkey! -- and I had a seizure 2.5 weeks later. A few years later, she had me taper off of it over a 3-month period. I was seizure-free for a few months, but then I ended up needing to go back on medication (Lamictal this time).
 
Nakamova - He's prescribed 1000mg of Keppra XR to start immediately at night then take 100mg of Dilantin in the morning. The Dilantin will be phased out.
 
Keppra is one of the drugs that you can taper onto fairly quickly. Your neurologist may be expecting it to kick in right away, so he probably doesn't want you to be doped up on two drugs any longer than necessary. On the other hand, if you're feeling like you want to taper a bit more slowly off the Dilantin, it should be safe: Keppra and Dilantin don't interact with each other (in terms of affecting each other's absorption rate), so it's unlikely that tapering over 30 days as opposed to two weeks will cause any problems. That said, I strongly recommend that you talk to your neurologist to let him know that you are considering a slower taper -- it's important to keep him in the loop and make sure that you are handling the medications safely.
 
Good luck and Hang in there

I've been on Keppra less than a year. I can tell of all teh seizure meds I have been on, it's my favorite so far. Like all these meds, they have a down side too and I have had many of the side effects Keppra is famous for. I started on 1000mg and I am now on 3000mg. Seizures have been controlled since I was on 2000mg but I had bad mood swings int he beginning (keppra rage) and my neuro increased the dosage as these episodes usually happened when the med lvl in my blood was falling. If I stabilize I think the sweet spot is somewhere around 2000mg to 3000mg.

I will warn you, that it was a tough ride for me to get to where I am at. Like you I had a lot of petit mal (lapses in concentration) seizures that I thought were just normal. Since going on Keppra everyone says I am mor eint he moment and I can concentrate a lot better.

That being said, I had terrible mood swings until I learned schedule my dosages throughout the day. I would take 1000mg in the morning, break 1 pill in half and take 500mg at lunch and another around 3pm (always with food) and then 1000mg at night. I did this on a tight schedule and I found my moods to stabilize and I rearely have issues now.

In the beginning I had terrible dreams and felt like I was dopep up on too much cold medicine. I was lucky that I had several friends on the same drug who all wanred me that I would go through this, but that it would pass. However, due to the large dosage Iw as on it took my about 4 months to really get a handle on the drug.

I think you will like this drug a lot better than the one you are currently on and once you get over the hump of adjusting to the new drug you should be fine.

GOOD LUCK!
 
From my

past experiences, I've always had to taper on one drug and taper off the other at the same time. SLOWLY. No ifs ands or buts about it.

Keppra and I didn't like each other very well, either. I had a couple of WEIRD reactions to it. Anyway, take the time to do it slowly. There are some of us that have to do that, and if your neuro disputes that, I can testify to being one of those patients. It's going to take 3 months for me to get up to 50 mg BID of Lamictal.

Take care,

Meetz
:rock:
 
My neurologist just weened me off Dilantin while initiateing keppre therapy.He had me start with250mg keppra twice daily for 1 week and tapering off my dilantin starting the next week .100mg per week whil upping my keppra till I was taking 1000 mg.twice daily.My thinking is so much better and I have not had any seizures.
 
landon's post seems to make the most sense to me however ~ everybody's body is different and you might have a totally different reaction than what yor're expecting.

In some cases, it's very dangerous to ween off dilantin and gradually increase your keppra AFTER LONG TERM USE.
This has been known to cause lower brain stem damage which controls your motor skills and/or trigger another gran mal seizure.

So ask yourself ~ Do I want better seisure control and put up with some side effects or no side effects but poor seizure control.

IMHO ~ If the dilantin is working fairly well, why take a chance on something else (if it's not broke, don't fix it)

Randy
 
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