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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@tink4iggy - thanks for sharing your experiences going off of levetiracetam (Keppra). How have you been feeling lately? Are you continuing to be seizure-free?

@mevy111 - glad to hear your muscle spasms reduced. Have you had more muscle spasms in the last month or two? How has the numbness you mentioned been lately? Did your doctor have any input on whether these were effects of weaning off your levetiracetam (Keppra)?

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yes , my son was nauseous while reducing keppra. I am trying to find out if this is a common side effect...

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Profile picture for janwill @janwill

yes , my son was nauseous while reducing keppra. I am trying to find out if this is a common side effect...

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@janwill Good Morning!
Welcome to the Epilepsy & Seizures group at Mayo Clinic Connect!
I did some quick research, and it looks like some patients do experience nausea when reducing Keppra. Interestingly, I had the opposite experience—I actually felt much more nauseous when my dosage was higher. I started at 500 mg twice a day, and my doctor gradually reduced it because of side effects. I feel so much better now with my lower dose.
As my doctor always says, every patient is unique!
How has your son been managing the nausea? Have you been able to check in with his doctor about what might help ease it?
Chris

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

@janwill Good Morning!
Welcome to the Epilepsy & Seizures group at Mayo Clinic Connect!
I did some quick research, and it looks like some patients do experience nausea when reducing Keppra. Interestingly, I had the opposite experience—I actually felt much more nauseous when my dosage was higher. I started at 500 mg twice a day, and my doctor gradually reduced it because of side effects. I feel so much better now with my lower dose.
As my doctor always says, every patient is unique!
How has your son been managing the nausea? Have you been able to check in with his doctor about what might help ease it?
Chris

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@santosha
Hi Chris
I think he has just been ignoring it and hoping it doesn't occur again. He has weaned from 1000mg a day to 500 a day and so far no seisure....keeping a close eye and fingers crossed

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Profile picture for janwill @janwill

@santosha
Hi Chris
I think he has just been ignoring it and hoping it doesn't occur again. He has weaned from 1000mg a day to 500 a day and so far no seisure....keeping a close eye and fingers crossed

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@janwill Good Morning
I'm so happy to hear that your son continues to be seizure-free! 🙏
When I was dealing with nausea from my medication, my doctor suggested eating smaller portions at each meal but having more frequent meals throughout the day. Perhaps this approach might help your son too.
During the more challenging moments in my treatment, I found it helpful to take things one day at a time and celebrate every small victory. It really gave me extra strength to keep going.
I hope your son's nausea is temporary and that he continues to stay seizure-free. Please feel free to share updates when you can – I'd love to know how he's doing.
Fingers crossed for him! 🤞
Chris

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@janwill
When he was taking 1000 mg a day how much did you cut his Keppra and how often to get to 500 mg? Many doctors cut meds by 50% but I never cut medication by 50%. The nausea could be caused by decreasing the Keppra too quickly. Unfortunately, doctors have a bad habit of doing that. Is your son taking the immediate dose or the extended release version? How long has he been taking Keppra?
Take care,
Jake

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Profile picture for Jake @jakedduck1

@janwill
When he was taking 1000 mg a day how much did you cut his Keppra and how often to get to 500 mg? Many doctors cut meds by 50% but I never cut medication by 50%. The nausea could be caused by decreasing the Keppra too quickly. Unfortunately, doctors have a bad habit of doing that. Is your son taking the immediate dose or the extended release version? How long has he been taking Keppra?
Take care,
Jake

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@jakedduck1

he has been reducing by 250g per week, He has been on keppra for a year. Should he maybe reduce fortnightly instead?

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Profile picture for janwill @janwill

@jakedduck1

he has been reducing by 250g per week, He has been on keppra for a year. Should he maybe reduce fortnightly instead?

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@janwill
I mean mg...

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Profile picture for janwill @janwill

@jakedduck1

he has been reducing by 250g per week, He has been on keppra for a year. Should he maybe reduce fortnightly instead?

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@janwill
Based on my own experience, this seems way too much and too fast. When my Keppra was reduced from 500 mg twice a day to 150 mg twice a day, it took 6 months.
I completely agree with what @jakedduck1 shared about many doctors reducing AED dosages too quickly.
Could you discuss this with your son's doctor and ask him to slow down the process?
Chris

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