Moving from Dilantin to Keppra

[Daph18]

Tarheel,
I have been on Dilantin for about 25 years now and like you, my doctor decided to switch me to Keppra.
Keppra for me was a complete disaster and actually increased my seizures.
Dilantin at least controlled my seizures.
After Keppra, the doctor decided to switch me to Epilem. Epilem controlled seizures but there was no way I could live with the side effects.
So after a year of being a guinea pig, I found myself back on Dilantin. The only change now is Vitamin D and calcium supplements.
I wish you well with the Keppra but after seeing your post I couldn't help but tell my story.

[Dignan]

Daph,

I find myself in the same situation as you. I was on Dilantin for 17 years and was switched off of it because bone loss.

I've also experienced some hormonal numbers out of whack that I used to blame on Dilantin also. But, I've been on Keppra now for over 6 mos and I'm sick of feeling tired and not mentally sharp anymore. Also, the hormone numbers have gone haywire again (after having corrected themselves after being off Dilantin for a year) which makes me wonder if Keppra is responsible for that as well.

I've considered going back on Dilantin because I felt good day to day while taking it and trying to take supplements to blunt the osteopenia I now have. Some doctors really don't like Dilantin though, and they caution against long term use in how it can affect your cerebellum and motor function.

I never noticed any problems like that when I took it, but I wanted to ask you what your experience in long term effects have been with Dilantin and how you felt about going back to it after some time away.

Thanks,

D

[jyearta]

Hi

Reading your post, I fell so bad for you. The seizures and side effects of medic. are a BIG pain.

I was put on Dilantin and Phen. back in 1971, then was switched from one med. to another. Then I was given Keppra around in the spring of 2004.

FOR me this was the worse, I tried for about 2 months, my Dr. would not listen to me about all the side effects.

I went back to my old neur. and asked to be back on dilantin and phen. he would not put back on Phen. BUT did put me back on dilantin.

I know all about the side effects of dil. and I might have to change, due some of the side effects of long term use.

But all these medic. have side effects, as for right now I'm choosing the one that I can live with. I want a somewhat normal life, Who doesn't.

We are all different and react differently to medic.

How after saying all that - there are several people in this forum who do good on Keppra.

I wish the best for you.
jyearta

[Daph18]

Many thanks for the replies. My initial problems with Dilantin surfaced in 2009 when I was having severe back problems. After seeing many specialists, they attributed the cause to long term use of Dilantin (25 years). They also found my thyroid was out of whack as well. Well, then came the long process of being taken off of one drug and put on another. (Keppra increased my seizures in my case). Then the drug Epilim was used and again went through the long process of being weaned off on one drug and put on another. Epilim controlled seizures but the side effects to too much for me. It was so bad I went back to the doctor begging him to put me back on Dilantin. At least I was able to manage some quality of life on Dilantin (albeit the bone issues). Now I am on a combo of Phenobarbatol and Dilantin and managing. My wife thinks my mind has gone (I am absent minded and forgetful at times) and she reminds me of this every day... What can I do? I just hope there is a drug that controls Gran Mal seizures without destroying a persons life. Thats how I feel at times.
I must say that Keppra and Epilim are excellent drugs and they work well for most people.

[jyearta]

Know what you mean with the memory problems.

I pulled up to my bank auto teller - I knew my code- just couldn't seem to do the steps correctly. And this is so easy - I felt so embarrassed.
just left w/o getting what I needed.

I have a hard time putting my words on this forum like how I am thinking or intending to say. Started to just drop out, but glad I didn't.

There are so great brain exercises that Bernard and others give the sites to pull them up on a post somewhere in the forum. If I could remember I would have attached them here for you.

Hope you have a better day.

[Dignan]

Daph,

Sorry to hear of all your troubles. I am thinking of going back on Dilantin, as I mentioned, just to see if I can get away from the drugged Keppra feeling.

I wanted to ask you, if you noticed any beginning effects when you were on Dilantin looking back, or if the back problems and thyroid just came out of nowhere (one day feeling fine and the next feeling off)?

I'm trying to decide what to do, and if I go back to Dilantin I want to stay on it only long enough to get through NFB and maybe try something else and I want to be aware of any warning signs, if there are any.

Thanks so much, and hang in there!

D

[jyearta]

I can not think of any problems, except when the level get to high, my eyes would shift from side to side FAST, several times a day and the dizzyness again when level is high.

It's like the others with memory issues.

If you decide to go back on dilantin talk to your Dr. about taking Vitamin B complex.

Just remember that each med. works diff. with each one.

Hoping the outcome will be what YOU want.

[momof3boys]

Hi! I saw your post and wanted to respond about the Keppra. Ive been on Keppra since the age of 17-18 years old. I am now 30. Just last November I was switched to the Keppra XR because I was experiencing headaches for several years that my drs thought was seizures trying to come on. But after meeting with a new dr, he suggested I try the XR. I did, and its helped take all my headaches away! As for the price, we go through Blue Cross Blue Sheild of Nebraska, and we pay $100 for a 6 month supply. I take 3000mgs each day.
I also take a vitamin B6 to help with the Kepprage. I wasnt told about this til November last year, but decided I might as well give it a try. I didnt seem to have bad Kepprage before taking it, but I have noticed Im more relaxed and not so uptight since Ive been taking it.

[TDK99]

Momof3boys - Does the Keppra control your seizures completely? What type of seizures do you have? I have been on Dilantin for over 35 years. My doctor wants me to switch to Keppra. I haven't had a seizure in 11 years with Dialntin. I am hesitant to switch but I am having side effects (numbness in hands and feet) from long-term dilantin usage.

[jyearta]

I am hesitant to switch but I am having side effects (numbness in hands and feet) from long-term dilantin usage.

I just wanted to tell you that the numbness was the start of B-12 deific. for me, being on Dilantin for some many years.
I am having a hard time now w/b-12 deif.
Ask you dr. about checking you Level on B-12. Don't let it get to low. I say that, because my got very low.
I had never taken any type of B vit. over all these years.

I am going to a New Neur. on Oct. 13, going to talk to her about my problems.

I have not a seizure (like the ones I used to Have) in many years. My now will feel like I am going to have a seizure, that last just a few seconds then its gone.

With my seizures under control with dilantin and klonopin, don't know what to expect.