Anyone experience side effects while decreasing Keppra?

Posted by ahernandez @ahernandez, Oct 7, 2018

Hey all...I have been seizure free for a little over a year now. My doctor has me decreasing my dose of Keppra a little each week. Since doing this I have felt nauseous occasionally, have had shakyness/twitching (not visible, feels like its happening on the inside), and just weird feelings (hard to describe). I feel like this may be withdrawal effects...has anyone experienced this while decreasing this medication?
Thank you!

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Hi, @ahernandez. That is great to hear you have been seizure-free for over a year now.

I'm sorry to hear you are now experiencing some nausea, shakiness and twitching, and other weird feelings as your doctor has you decreasing the dose of levetiracetam (Keppra). I'd like to invite others who have mentioned this medication to offer their thoughts on your experiences, like @ryman @techi @robertjr @bonnieh218. @dawn_giacabazi and @jakedduck1 may also have some thoughts.

What has your doctor or pharmacist said about the symptoms you are experiencing, @ahernandez?

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@lisalucier

Hi, @ahernandez. That is great to hear you have been seizure-free for over a year now.

I'm sorry to hear you are now experiencing some nausea, shakiness and twitching, and other weird feelings as your doctor has you decreasing the dose of levetiracetam (Keppra). I'd like to invite others who have mentioned this medication to offer their thoughts on your experiences, like @ryman @techi @robertjr @bonnieh218. @dawn_giacabazi and @jakedduck1 may also have some thoughts.

What has your doctor or pharmacist said about the symptoms you are experiencing, @ahernandez?

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@ahernandez l was reading your discussion about keppra. I was on keppra since 2014 until 2018. I was looking online and they said sometimes you have to change up meds until you find one that works. I had some of the symptoms you are talking about but l think it might be from my ammonia levels. I do know if you been on a med to long your body gets immune to it and you might have to change but l would tell your doctor the symptoms and see if he will do something. Maybe he will change your med to something else.

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@lisalucier

Hi, @ahernandez. That is great to hear you have been seizure-free for over a year now.

I'm sorry to hear you are now experiencing some nausea, shakiness and twitching, and other weird feelings as your doctor has you decreasing the dose of levetiracetam (Keppra). I'd like to invite others who have mentioned this medication to offer their thoughts on your experiences, like @ryman @techi @robertjr @bonnieh218. @dawn_giacabazi and @jakedduck1 may also have some thoughts.

What has your doctor or pharmacist said about the symptoms you are experiencing, @ahernandez?

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@ahernandez are you talking about totally tapering off of Keppra completely? I tapered down just 1,000 mg of Keppra (not totally off it all) with none of the effects you are talking about.
Last year at my last neurologist visit I asked about completely tapering off of all Keppra since I am doing so well. They warned me that if I was totally off all Keppra and things started flaring up again that I could not restart Keppra again. They said the Keppra would not be as effective as it was prior to quiting it completely. Go figure huh? I am presently taking 500 mg twice a day. I’m not willing to gamble quiting it totally since I know I could not return to it if needed.

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Hi, @ahernandez - wondering how you are doing lately? Have you had any seizures? How would you say your whole taper off of levetiracetam (Keppra) went?

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I have been having a lot of trouble with Keppra. Although it has eliminated my seizures, it has several very bad side effects. I have a rash on my legs which is at its worst at night and keeps me from sleeping. And it has substantially worsened my underlying depression. Has anyone else had these side effects and, if so, what have you done about them?

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My son did not have the rash, but irritable mood yes. He did not care about much anymore. He took a b complex to help. We needed to switch medication as the side effects were not worth it.

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@jenfossbru
Hello,
What medication is your son on now?
Jake

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Trileptal, 900 mg twice a day. It was a god sent as he was himself again. Seizure free since May 2019. He has focal seizures, gets an aura 1 minute before. Just started at age 17. Jennifer

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@jdernburg

I have been having a lot of trouble with Keppra. Although it has eliminated my seizures, it has several very bad side effects. I have a rash on my legs which is at its worst at night and keeps me from sleeping. And it has substantially worsened my underlying depression. Has anyone else had these side effects and, if so, what have you done about them?

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@jdernburg
Hello,
Have you told your doctor about your rash? Did it start soon after you began Keppra?
Jake

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@jenfossbru
Hi again,
Thank you!
It’s always good to hear about someone who has controlled their seizures.
Jake

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