Moving from Dilantin to Keppra

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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.
 
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:rock:
 
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
 
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.
 
:agree:Know what you mean with the memory problems.:agree:

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.
 
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:rock:
 
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.
 
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.
 
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.
 
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.
 
I have seen on previous posts that people have had an increase in seizure activity while on generic keppra. could you tell me what supplier that was. Teva? thanks
 
I started out on Dilantin and it did a job on my teeth and gums :( I switched to Tegretol when I had no insurance. I was glad I did. My teeth and gums... holy cow. I should have never been on it as long as I was :(
 
OMG. My first post. I have no idea where this might appear. I am responding to a post by Dignan. My circumstances seem similar although I have used Dilantin for 25 years, since 2007 I've tried some of the new drugs, unsuccessfully. I finally demanded I get back on Dilantin. I have no mental issues with Dilantin. ... I got a new neurologist and she (gawd I love women doctors) had a bone density exam performed. I am severely osteoporotic (-5.3, -4.5, -3.8, etc) so I am trying Keppra, again. But the reason I decided to post, you mentioned your hormones. My hormones are also screwed up, and I have other symptoms/problems... I recently found out I have Celiac Disease... Something to consider??
 
rbarr and dignan

As you know, ALL medications present different side effects for different people.
I've been on dilantin (and pheonobarb) since 1979 and yes, there are MANAGEABLE side effects from long term use. BUT it completely controls my seizures.
Why change meds when the one you are on is working and also risk having another seizure or feel like crap, when the "newer" AEDs haven't been out long enough to test for "long term use".

Re: Bone density ~ I had a bone density test done a couple of years ago and I was showing signs of bone density lose so I started taking one tablet of Calcium/Magneseum each day and it has restored my bone density.

Re: Hormones and stuff ~ I've had my liver enzymes checked (every 3 months) and the count has always been normal.

Re: ~ Dental, Because of my dilantin use, I see the Dentist every 3 months (b/c of the dilantin use it is a free check) and have no prob.with receeding gums.

My Neurologist also advised me not to change meds b/c it COULD cause lower brain stem damage (that control most motor functions)

I'm 56 years old and at this stage of my life, I'm not going to screw around with my meds.

Randy
 
rbarr and dignan

As you know, ALL medications present different side effects for different people.
I've been on dilantin (and pheonobarb) since 1979 and yes, there are MANAGEABLE side effects from long term use. BUT it completely controls my seizures.
Why change meds when the one you are on is working and also risk having another seizure or feel like crap, when the "newer" AEDs haven't been out long enough to test for "long term use".

Re: Bone density ~ I had a bone density test done a couple of years ago and I was showing signs of bone density lose so I started taking one tablet of Calcium/Magneseum each day and it has restored my bone density.

Re: Hormones and stuff ~ I've had my liver enzymes checked (every 3 months) and the count has always been normal.

Re: ~ Dental, Because of my dilantin use, I see the Dentist every 3 months (b/c of the dilantin use it is a free check) and have no prob.with receeding gums.

My Neurologist also advised me not to change meds b/c it COULD cause lower brain stem damage (that control most motor functions)

I'm 56 years old and at this stage of my life, I'm not going to screw around with my meds.

Randy

:agree::agree::agree:
 
I definitely understand why you don't want to screw around with your meds. After 25 years of not having (known) trouble with dilantin, the last 5 years of trying various new drugs has been rough both mentally and physically. That is why I demanded getting back on dilantin late last year. I can think and be happy again! Life is worth living again!

I don't know if my recently diagnosed Celiac Disease caused my osteoporosis or if dilantin caused it. It would have been nice if some of my past neurologists would have checked my bone density. If there is one thing I have learned, you can't rely on doctors. One has to be their own advocate. Anyway, I agreed to give keppra another try to remove a possible impediment to my bone density recovery. A week after taking only 250mg twice daily and having sleepiness, headaches, no motivation, fatigue, irritability, dizziness, I decided I would rather die from broken bones but with a clear mind on dilantin. Then I read some on this forum and decided to buckle down and try to make the change... This morning, as I try to hold my head up and type this, I am again thinking "Is it really worth all of this?". I'll call my neurologist Monday and get her opinion.

At 62yo I've been told my "severe villous atrophy, etc, etc" will continue to cause malabsorption issues for a long time. Even with all my calcium, magnesium and other supplements my celiac diseased will keep me from rebuilding my bone density and regaining my strength for years. Hey! At least I haven't had a seizure since 1981!
 
Hi Due Reflection. I was treated with dilantin since 1993 and my seizures were well controlled as long as the dose remained in therapeutic range. The doses were lowered to wean from meds after long remissions or to try new aeds. I had 6 events over a period of 19 years. And then entered levetiracitam in september of 2011. Dec 14/2011 I had a intense gran mal event , ambulance er, keppra dose 1500mg am 1500 mg pm. then again 2/7/12 gran mal ambulance er, icu, keppra dose 2000 mg am 2000mg pm then again 7/9/12 gran mal ambulance er icu, intubation, renal failure keppra dose 6000mg am 6000mg pm. I asked my doctor if the events could be related to the keppra and she said it was just a coincidence and that seizures sometimes cluster. I didn't believe her, I asked to lower the dose at least to 4000mg. and she said ok with the understanding that I may have another seizure. I did not. I then asked to be weaned from keppra and go back to dilantin alone or add another drug. She didn't want to add another if the keppra wasn't working. so I went solo on the dilantin. I weaned from keppra over 7 months but unfortunately had on more seizure on dilantin at 7 monthes. Still better odds than on keppra, Im on topamax now and it seems to be doing well. I hope that you are doing well too. I truly believe that the keppra messed me up royally and interfered with the efficacy of the dilantin also. The medical community seems to say other wise.
 
Hi there!! I did switch from Dilantin to Keppra!! My doctor wanted me to switch, he said that the Keppra is a much safer medication than Dilantin with less side effects!!! WRONG!!! I was only on the Dilantin (generic) since September, I had my 2nd one ever then, 1st one was over 13 years ago. I was on Dilantin, he switched me to Keppra, I took the generic, name was too expensive for me. I right away started feeling down and sad. I was on this Keppra (generic) from November til April! I told him right away I didn't like it. He told me it takes a while for the body to get used to it, so I kept on it. I went in to see him every month, finally in I think Late March I told him I wanted OFF. He put me back on Dilantin( weaning me on for about a month). I had a breakdown and wanted to die. I went into the doctor after leaving work, unable to stop crying for a couple days, he took me off of it immediately! I was on Dilantin and am on it now. I feel fine! I get kind of ditzy sometimes, but I'll take the ditzy and bad memory over my hating life any day!

I heard this Keppra does wonders for people but I am NOT a fan at ALL!!! I had just gotten married in September and it was ruining my marriage. I was a horrible person and am so thankful I am OFF of that stuff!!!!

Best of luck with everything, just remember if you do start taking the Keppra and start feeling down, sad whatever, GET OFF!!!!!
 
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