Side effects from Keppra?

Posted by annabcd @annabcd, Mar 6, 2023

This is about my husband. He started having seizure like episodes four months ago once or twice a month that lasted 5-20 minutes. After trying to convince doctors these weren't anxiety attacks they did an EEG which was interrupted by a seizure like episode. They immediately got him on Keppra without confirming epilepsy and since then he's been completely out of it, has memory loss, slurs his speech, uneven pupils sometimes and others he smells something burning, cough, panic, sees flashing lights and colors,loses contact with the environment and more. He has stopped taking it since Saturday morning and he's much more conscious but still had episodes mostly with his head hurting, panic, burning smell and getting super sleepy when this happens. Memory is getting better.

Does anyone know if all of these are normal as far as bad side effects of keppra go and if so when they will go away?

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Profile picture for sunny18 @sunny18

I was diagnosed with simple seizures about 8 years ago in the ER. I did not have any previous seizures or symptoms previously but due to the MRI showing a arachnoid cyst and a problem with my speech I was placed on a generic Keppra 750 mg bid but is still struggling with the diagnosis and the medication. Has anyone else experienced major agitation with this medication?

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@sunny18
Welcome to our group!
Yes, Keppra can definitely cause mood-related side effects for some people. Thankfully, I haven't experienced those since starting Keppra alongside Epidiolex in December 2024.
As my doctor reminds me, everyone responds differently – what works well for one person might not work for another. Side effects vary from person to person and often depend on the dosage prescribed. When I first started Keppra at a higher dose, I had several side effects (not mood-related ones), but they became much more manageable once my dosage was reduced and customized.
For example, Tegretol (carbamazepine) sent me into a depression, so I had to switch to something else. But I know many people who do really well on it!
I'm curious – what kind of epilepsy do you have?
Chris

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I had to stop keppra. Bad side effects. I now take lamotrogine. Get a good neurologist. If yours isn’t listening get a different one. Get one that specializes in seizures. I do not have epilepsy it have. Seizure disorder.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@methel - that sounds like great news. Do you mean since you been on levetiracetam (Keppra), you've had no seizures?

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@lisalucier

And yes, the heavy dose seems to be necessary. As the Keppra dose increased, the severity of the seizures decreased. The first seizure generalized and I woke up on the floor. The last seizure, just the left half of my tongue vibrated. (I can’t replicate that consciously. ) And the difference in seizure intensity seems to be the amount of Keppra needed to get control.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@methel - that sounds like great news. Do you mean since you been on levetiracetam (Keppra), you've had no seizures?

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@lisalucier

I take a heavy dose of Keppra extended release, 1500 mg 2x a day. At the beginning of this, (after the meningioma, stroke, surgery which started the seizures) I would have an occasional seizure when the medication was wearing off, just before the next scheduled dose. But the switch to extended release ( recommended by the phlebotomist) apparently evened out the med’s so that I didn’t get the ‘dip’ and my last seizure (knock on wood) was in 2017.

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Profile picture for methel @methel

@sunny18

I’ve been on Keppra extended release for years with success. I’ve had no possible side effects. except I sleep a little more than I used to.

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@methel - that sounds like great news. Do you mean since you been on levetiracetam (Keppra), you've had no seizures?

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Profile picture for sunny18 @sunny18

I was diagnosed with simple seizures about 8 years ago in the ER. I did not have any previous seizures or symptoms previously but due to the MRI showing a arachnoid cyst and a problem with my speech I was placed on a generic Keppra 750 mg bid but is still struggling with the diagnosis and the medication. Has anyone else experienced major agitation with this medication?

Jump to this post

@sunny18

I’ve been on Keppra extended release for years with success. I’ve had no possible side effects. except I sleep a little more than I used to.

REPLY
Profile picture for sunny18 @sunny18

I was diagnosed with simple seizures about 8 years ago in the ER. I did not have any previous seizures or symptoms previously but due to the MRI showing a arachnoid cyst and a problem with my speech I was placed on a generic Keppra 750 mg bid but is still struggling with the diagnosis and the medication. Has anyone else experienced major agitation with this medication?

Jump to this post

@sunny18
Vitamin B6 helps some people with anger and aggression issues caused by Keppra. Ask your doctor about it.
Jake

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Profile picture for sunny18 @sunny18

I was diagnosed with simple seizures about 8 years ago in the ER. I did not have any previous seizures or symptoms previously but due to the MRI showing a arachnoid cyst and a problem with my speech I was placed on a generic Keppra 750 mg bid but is still struggling with the diagnosis and the medication. Has anyone else experienced major agitation with this medication?

Jump to this post

Hi @sunny18 - I wanted to let you know I moved your post here so that you could talk with others who have taken levetiracetam (Keppra) or been around a friend or family member who took it and can speak to experiencing agitation with this medication.

- Side effects from Keppra? https://connect.mayoclinic.org/discussion/does-anyone-know-if-intense-keppra-side-effects-are-normal/

Please meet @keppraeffect @hippele @royanthony @gratefulbob and others in this discussion.

Were you saying, sunny18, that you are still struggling with the diagnosis? If so, will you share a bit more about that?

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I was diagnosed with simple seizures about 8 years ago in the ER. I did not have any previous seizures or symptoms previously but due to the MRI showing a arachnoid cyst and a problem with my speech I was placed on a generic Keppra 750 mg bid but is still struggling with the diagnosis and the medication. Has anyone else experienced major agitation with this medication?

REPLY
Profile picture for pscholes10 @pscholes10

I’m taking Keppra 1000 mg twice daily since February prior to a craniotomy and possible focal seizures to opposite side of face. Now I completed the second craniotomy on the other side. My neurosurgeon reported that I can stop the Keppra because he doesn’t believe I had seizures at any time. I decreased the dose to 500 mg BID for two days then decreased again to 500 mg daily. I’m unsure if I am safe to stop the Keppra or should stay in a decreasing dose over a longer period.

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Please be careful. Stopping an AED increases your risk of seizure activity over time. You have had 2 craniotomies? I had one in May 2014. My eeg shows a breach rhythm which is non epileptic but abnormal. My neuroligist said he felt I could taper off my topirimate. I said no. Now I take lamotrigine ER 100mg daily. Did your doctor give you a printed schedule for reducing your dose? I have remained seizure free since 2014. To me that is a gift I will guard forever.

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