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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jdernburg | @jdernburg | Feb 17, 2020

In reply to @jakedduck1 "@jdernburg Hello, Have you told your doctor about your rash? Did it start soon after you..." + (show)

The rash started after I had been on Keppra for about 18 months. We tried another med that had worse rashes. My neurologist says "All anti-seizure meds have rashes as a side effect." I am more concerned about the depressive symptoms as I already was depressed before I developed seizures. While I have been seizure-free on 1500 mg. of Keppra a day, the depression is debilitating; good thing I'm 77 and no longer working!

Lisa Lucier, Moderator | @lisalucier | Feb 18, 2020

In reply to @jdernburg "The rash started after I had been on Keppra for about 18 months. We tried another..." + (show)

@jdernburg - did your doctor offer a reason why anti-seizure medications seem to promote rashes? Is the levetiracetam (Keppra) prompting the depression you mentioned was debilitating?

Leonard | @jakedduck1 | Feb 18, 2020

@jdernburg
Hello,
I was just curious since you’re so susceptible to rashes from at least to see your medicine if you ever had Steven Johnson syndrome.
If I had your susceptibility to rashes I would ask the doctor if genetic testing could determine the potential other types of rashes, if so I’d ask that they be done. This genetic test test is frequently done on people especially of Asian ancestry since they seem to be more prone to Steven Johnson which can be a potentially deadly rash, fortunately it’s rare.
What medication are you currently taking and is it successfully in controlling your seizures?
I was also wondering what type of seizures you have? Sometimes I can tell what type from the medicine they take but Keppra being a broad spectrum anticonvulsant it can be anybody’s guess. Although if I had to guess I would guess Generalized Tonic-Clonic seizures.
Also are your seizures of unknown origin (idiopathic?)
Just one more question, do you know where your seizures originate?
Take care,
Jake

kel1 | @kel1 | Aug 28, 2022

Hello, I’ve been seizure free for 10 years. I’ve experienced Keppra Rage. I’ve been angry, depressed, all the list. Then since it’s at a subthreaputic level my primary doc said I could decrease and my pharmacist said I could decrease it slowly on a nine week period. Now I’m decreasing it it’s like I’m back to normal, it’s wonderful but I’m just wondering if anyone has dealt with the horrible symptoms of keppra and then if they go off it they’re back to their normal self?
Thanks.

Colleen Young, Connect Director | @colleenyoung | Sep 5, 2022

In reply to @kel1 "Hello, I’ve been seizure free for 10 years. I’ve experienced Keppra Rage. I’ve been angry, depressed,..." + (show)

Hi Kel, oh that must've been disconcerting to have Keppra Rage as you tapered off the medication. You'll notice that I moved your post to this existing discussion:
- Anyone experience side effects while decreasing Keppra? https://connect.mayoclinic.org/discussion/decreasing-keppra/

I did this so you can read the previous posts and connect easily with fellow members like @bonnieh218 @ahernandez @jdernburg @jenfossbru and @jakedduck1

I'm glad you're feeling more like yourself again. What type of seizures do you have? What will you use for seizure management after tapering off Keppra?

jdernburg | @jdernburg | Sep 5, 2022

In reply to @jdernburg "I have been having a lot of trouble with Keppra. Although it has eliminated my seizures,..." + (show)

I have been depressed for a number of years and I think Keppra is making it worse. My neurologist has suggested other drugs but they list depression and weight gain as side effects so I've stuck with Keppra. I would like suggestions from other people who have tried other anti-seizure meds.

jenfossbru | @jenfossbru | Sep 5, 2022

My son was first prescribed Keppra and it was horrible. He reported he felt mad/ angry and did not know why. Also felt nothing brought him joy. After 2 months, we switched to Trileptil and he was back to himself. On Keppra, he was never able to get to the therapeutic dose because of side effects. Best of luck!
Jennifer

kel1 | @kel1 | Sep 5, 2022

Hey @ahernandez

I have felt the same experience on the inside. The twitching.
I’m reducing my keppra from 250 every other day until I’m off of it since I’m at subthreaputic level.
But I’m still on two medications for seizures.
Also going off of keppra has its bad side effects too. I’m shaky and cold and nauseous.
Kelly

lmlambert4 | @lmlambert4 | Sep 30, 2022

In reply to @colleenyoung "Hi Kel, oh that must've been disconcerting to have Keppra Rage as you tapered off the..." + (show)

Hi Colleen,
I've had some focal seizures a month after I received gamma knife radiation for a re-growing meningioma tumor in November of 2020. I was put on 500 mg. of Keppra (Levetiracetam) twice daily. Initially, I was very dizzy and sleepy at the start of Keppra but quickly adjusted and have been fine since. However, I've not had a seizure in 15 months since the last 2 MRI's show no return of the tumor or brain edema which was caused from the radiation. I seriously want to wean myself off the Keppra, if possible. Has anyone eliminated this medication and not had seizures return??