Fiance being switched from generic Dilantin to generic Keppra.. worried

[cncwheeler]

My fiance, who has grand mal seizures, and the doctors don't know why is being slowly switched over from generic Dilantin to generic Keppra. I'm going insance b/c the Dilantin has been working amazinly. No seizures and no side effects (only been on it for 3 years). I have been reading tons of bad reviews and cases on Keppra and am extremely nervous for him to switch. My whole thing is why fix something if it's not broken. The Dilantin is working and has been, so why switch and take the risk right? I'[m worried switching is going to cause seizures while he is driving, at work or what not and that's making me stressed out. I'm already constantly waking up everytime his muscles jerk in bed or he turns over.. I don't know how to deal with this.

I would really like some advice from someone who switched from Dilantin to Keppra...and some advice as to what I need to do from not being so stressed over it. I just don't think I can see him have another seizure.

Hope someone can help.

Thanks

 

[epileric]

Welcome

Have either you or your fiancée asked why he is being changed to Keppra?

 

[cncwheeler]

The neuro said he doesn't like that side effects of Dilantin that show up later on down the road, so he said since he has only been on it for 3 years now is a good time to switch to Keppra, since it doesn't have the harsh side effects that show up later on.

 

[epileric]

It is true that the effects of dilantin are more long-term & that if he does react to Keppra you will know about it rather immediately (a good thing about Keppra).

That being said, despite having awful side-effects remember that not everyone gets them & your fiancée might benefit from it. An advantage is that it is not processed in the liver but in the kidneys which is easier on your system from what I understand.

The bottom line being that there is a whole array of anti-epileptic drugs to try should this not work (that lovely medication merry-go-round) and that even though certain side-effects are common, everyone reacts differently to different drugs.

 

[travel bug]

I used to be on Dilantin and was switched to Keppra, but unlike your fiance, I wasn't having good luck with Dilantin; it made me feel horrible and my levels tended to drift downward-not good. Even though Dilantin didn't work for me, I was also worried about making the switch to Keppra due to what I had read. But I've had pretty good luck with Keppra; it's given me good seizure control with none of the really scary side-effects you read about. My only problem is that I'm sleepy a lot of the time which may, or may not, be caused by Keppra.
All the best to both of you!

 

[cmjerez73]

Switched to Keppra from Dilantin.

Used Dilantin for sezures for two years without seizures. I was living in a fog with Dilantin. My neurologist switched to Keppra. Worked great until my insurance company switched me to generic. With generic Keppra I had my first seizure after five years free of seizures,got anxiety attacks and yesterday a second seizure. My neurologist refuses to take me off Keppra. She wont do it unless I sign up for a test with Lyrica in which I wont know if I am taking a sugar pill or the actual med untill the study is finished. Some Doctors run their office like a McDonald's.:whip2

 

[petero]

My fiance, who has grand mal seizures, and the doctors don't know why is being slowly switched over from generic Dilantin to generic Keppra. I'm going insance b/c the Dilantin has been working amazinly. No seizures and no side effects (only been on it for 3 years). I have been reading tons of bad reviews and cases on Keppra and am extremely nervous for him to switch. My whole thing is why fix something if it's not broken. The Dilantin is working and has been, so why switch and take the risk right? I'[m worried switching is going to cause seizures while he is driving, at work or what not and that's making me stressed out. I'm already constantly waking up everytime his muscles jerk in bed or he turns over.. I don't know how to deal with this.

I would really like some advice from someone who switched from Dilantin to Keppra...and some advice as to what I need to do from not being so stressed over it. I just don't think I can see him have another seizure.

Hope someone can help.

Thanks

Keppra for me was about the most evil thing that has ever happened.
My new Dr. switched me to it for some reason also. I'm still not sure why. Began tapering off/on each of them.
A short while later I had the worst seizure span and most horrific experience of my lifetime. I was taken to the ER after waking up with a massive horrific migraine - I could barely stand. Then... I'm still not quite sure what was real and not for the next 8 hours or so. But all of it was utter hell. Pain like I'd never imagined possible. White searing blazing pain.
pure evil
utter hell

ask the Dr. why
I'm still not sure why
I never want to go back to that hospital again if it involves a seizure.
I'm not on insurance so I'm a little stuck.

I advise strongly against phenytoin to levetiracetam switch from my personal experience. I wonder if there was some sort of deal the hospital had with the levetiracetam supplier.
I still can't get the experience out of my head and it has been nearly a year.
I can't imagine the experience ever leaving my head either.
Although I've often imagined ways of assuring it would do so.
But I obviously haven't yet.

 

[Daph18]

My doctor tried Keppra with me too after being on Dilantin for many years.
The reason being - long term effects of Dilantin were making a mess of my bones.
Keppra actually increased seizures for me - it didn't work.
I am not saying Keppra is a bad drug, it just didnt work in my situation.

I am back on Dilantin with a mix of Phenobarbatol with the help of Vitaman D and Calcium tablets.

 

[jyearta]

I have been on dilantin for 40 years here and there.

A Dr. I went to put on Keppa, and for me it was the worse time in my life. It might NOT have to side effects down the road like dilantin. That being said the life I had ( GRRRRR) while on Keppra was pure_ _ _ _.
No I didn't have a serizure while on this, but the life I had was horrible.

Yes I'm experiencing the side effects now of being on dilantin for all these years. I'm B-12 defic. I react badly to the shots (which I have to Have, I now have so nerve damage)

Every medc. works diff. with each diff. person. I know how scary it is to try a new med., however that is the only way any of us will find out what works for us.

I also want to mention that I generic have not worked for me in the last 10 years, could be age, could be the liver.

Ask for band name on med.

 

[momof3boys]

I was put on Keppra at around the age of 18, and in November 2010, at the age of 29, they switched me over to the Keppra XR because of the bad headaches I was having with Keppra. My drs always thought it was just seizure activity, but once this new dr I am now seeing, told me about Keppra XR, he switched me over and within a week I noticed the headaches were going away. Since then, Im on the Keppra XR and take 3000mgs a day. The headaches are gone, and I do take a complex b vitamin in the morning too. They say it helps with the "kepprage". Other than it helping my headaches, things have been great so far!

 

[Blue Cat]

When I had my first sz they put me on dilantin until they could do all the test to see what was going on. It was horrible, felt like I was three feet behind me looking through someone else's eyes. After they determined it was generalized my doc put me on Lamictal which has been wonderful, don't have any side affects. When they switched me to an Indian generic after being 7 yrs sz free I had two grand mals, chged me to Teva generic lamictal and added 2000 Keppra. Have had no problems with it this last 8 months, so, so far so good. It's different for everyone.