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?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @motobee
I have not heard from you for a while.
How has life been treating you? Have you been able to sleep better?
Looking forward to your news!
Have a beautiful day 🌻
Chris

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hello Chris,
thanks for asking.... sleep ???? what 's that ??
I wish I could sleep like I used to years ago. No sleeping aids seem to make any difference. some nights are ok, others I"m up till morning and dragging around all day... NO FUN.
Tried many things from my doctor to my friends suggestions and nothing helps. Just part of my life I guess. Hope you are well, and thanks again.

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Profile picture for motobee @motobee

THANK YOU.... I NEVER WOULD STOP TAKING KEPPRA ON MY OWN... GOOD LUCK WITH ALL YOU'RE DOING AND KEEPING SO WELL.

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Hi @motobee
I have not heard from you for a while.
How has life been treating you? Have you been able to sleep better?
Looking forward to your news!
Have a beautiful day 🌻
Chris

REPLY
Profile picture for Leonard @jakedduck1

@sungaltoo
What dose of Gabapentin do you take?
How often are you having nocturnal seizures?
Take care,
Jake

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I’ve been taking 300mg 3x day at 8am, 2pm, and with 225mg lacosamide at 8pm, since 2013. I can’t take it with my 8am lacosamide as it will make me sleepy. I’ve tried dropping both deugs or cutting a dose, and had daytime seizures.

I have sleep headaches that wake me up just about every night on a run, which is 1-2 weeks usually. Then I’ll be ok for about the same and then they’ll start again. Some nights I wake up 1x and some 2-3x. I usually go to bed about 10:30pm. The time I wake up is usually different. Sometimes 1-2am, or 3-5am, or 6-7am. I’ve tried to track it to food, sleep time, room condition, daytime activity etc and none of it seems causal. I do think stress plays a part in it.

No matter what time I wake up in the am finally I always feel rough. It takes me an hour after my 8am lacosamide before I can get out of bed and start functioning

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Profile picture for sungaltoo @sungaltoo

I have both tonic clonic and absence/partial seizures. I tried Keppra but it didn’t work for me. I still had both kinds. I wasn’t on it very long, a month or two, but it had no affect on me at all so I was put on Vimpat, generic is Lacosamide, and it worked from day one. I still had to stay on Gabapentin too. I’m still on the same prescriptions ten years later and they work mostly. I still have nighttime sleep seizures periodically.

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@sungaltoo
What dose of Gabapentin do you take?
How often are you having nocturnal seizures?
Take care,
Jake

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Profile picture for sungaltoo @sungaltoo

I have both tonic clonic and absence/partial seizures. I tried Keppra but it didn’t work for me. I still had both kinds. I wasn’t on it very long, a month or two, but it had no affect on me at all so I was put on Vimpat, generic is Lacosamide, and it worked from day one. I still had to stay on Gabapentin too. I’m still on the same prescriptions ten years later and they work mostly. I still have nighttime sleep seizures periodically.

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@sungaltoo Hi!
I'm so glad to hear that Vimpat combined with Gabapentin is working better for you. I've actually tried that same combination before, but it didn't work for me. It's fascinating how different each person's response can be – what's effective for some may not work at all for others.
I'm currently researching the various therapeutic classes of AEDs to better understand whether all the medications that failed for me might have belonged to the same class. I've come across one category called "non-aromatic antiepileptic drugs," but I'd love to learn more about the complete classification system.
Does anyone in the group have more information about the different therapeutic classes of AEDs that you could share? I'd really appreciate any insights or resources you might have.
Thanks so much!
Chris

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Profile picture for motobee @motobee

I take Keppra twice a day and so far no negative reactions.

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I have both tonic clonic and absence/partial seizures. I tried Keppra but it didn’t work for me. I still had both kinds. I wasn’t on it very long, a month or two, but it had no affect on me at all so I was put on Vimpat, generic is Lacosamide, and it worked from day one. I still had to stay on Gabapentin too. I’m still on the same prescriptions ten years later and they work mostly. I still have nighttime sleep seizures periodically.

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @joseph1963
Thank you for sharing your Keppra experience with us. All AEDs have potential side effects. It's also worth noting that anxiety can be a symptom of epilepsy itself, as explained at this link from the Epilepsy Foundation: https://www.epilepsy.com/complications-risks/moods-behavior/anxiety
In addition to Keppra and pure CBD, I use many other approaches to help control my seizures and improve my overall well-being. These include regular exercising, yoga and meditation, maintaining a healthy diet, prioritizing good sleep, taking supplements, and managing my triggers – all with my doctor's support.
If you're looking for specialized care, Mayo Clinic has excellent epileptologists if there's a facility near you. If you're not close to a Mayo Clinic, the Epilepsy Foundation's 24/7 Helpline can help you find an epileptologist in your area: https://www.epilepsy.com/247-helpline
Did your doctor recommend stopping Keppra, or was this a decision you made on your own?
Chris

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THANK YOU.... I NEVER WOULD STOP TAKING KEPPRA ON MY OWN... GOOD LUCK WITH ALL YOU'RE DOING AND KEEPING SO WELL.

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Profile picture for motobee @motobee

I take Keppra twice a day and so far no negative reactions.

Jump to this post

Hi @joseph1963
Thank you for sharing your Keppra experience with us. All AEDs have potential side effects. It's also worth noting that anxiety can be a symptom of epilepsy itself, as explained at this link from the Epilepsy Foundation: https://www.epilepsy.com/complications-risks/moods-behavior/anxiety
In addition to Keppra and pure CBD, I use many other approaches to help control my seizures and improve my overall well-being. These include regular exercising, yoga and meditation, maintaining a healthy diet, prioritizing good sleep, taking supplements, and managing my triggers – all with my doctor's support.
If you're looking for specialized care, Mayo Clinic has excellent epileptologists if there's a facility near you. If you're not close to a Mayo Clinic, the Epilepsy Foundation's 24/7 Helpline can help you find an epileptologist in your area: https://www.epilepsy.com/247-helpline
Did your doctor recommend stopping Keppra, or was this a decision you made on your own?
Chris

REPLY
Profile picture for motobee @motobee

I take Keppra twice a day and so far no negative reactions.

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I was on Keppra for over 20 years. Whether it's been a build-up from long term usage or I just realized that I've been having Anxiety attacks along with seizures. Anxiety is a side effect of Keppra. They say it's rare.
I just went off it 2 months ago. I started adding Kava supplement 100 mg. in the afternoon. Up to this comment I have not had a seizure or anxiety attack since April 20th 2025. I do feel much calmer and I thinking skills have improved. I'd definitely consider seeing a epileptologist.
I've done a lot of research on seizure drugs and alternative herbs.
I've never seen one but wish I would have made the decision to see an epileptologist decades ago.
My life may have a different story.
Do some research on kava, tumeric, and niacin (100mg.)

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Profile picture for hippele @hippele

A neurologist is treating me. When I had my tonic clonic seizure 2 yrs ago, they started me out on 500mg keppra 2x a day. A year later, I reduced that to once a day. I did have another less intense seizure the second year when I forgot to take my once a day pill. Thats when doctor explained the 12hr duration of keppra so I then did 250 2x a day. Then this year I started reducing further in Feb and was completely weened off very slowly by May. All these decisions were made by me and not my doctor. I informed him what I was doing. Of course, they can not recommend my planned path as they are afraid of the liability for them in the United States. They are more comfortable giving you pills even with side effects as that protects them in the courts. The patient has to make their own decisions and take their own CALCULATED chances. God Bless.

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Living with discomfort and pain can mess with our heads and make us want to do things that might not be the best choice. I've been there myself! Back in 2019-2020, when I was seeing general neurologists, I wanted many times to toss all my medications in the trash. Thank goodness my husband stopped me from doing this! Those doctors just followed the protocol in terms of medication dosage and were very resistant to reducing my dosage.
But, as I mentioned earlier, everything changed when I switched doctors and was treated by one with expertise in epilepsy.
I understand Keppra is the first medication you have been put on, correct? Perhaps Keppra isn't the best medication for you? It works well for some and not well for others. As my current doctor always says to me: every person and body is unique!
Have you considered having a second opinion, especially with an epileptologist?
Take care!
Chris

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