Side effects from Keppra?
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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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.
@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
@sungaltoo
What dose of Gabapentin do you take?
How often are you having nocturnal seizures?
Take care,
Jake
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
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
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.
So sorry for the difficulties you go through. NO FUN !!
How do you manage to go through a day ? I have trouble with just a few sleepless nights, I can't imagine your suffering.
Wish I could give you some advice or help BUT I am not qualified to do so.
wishing you better health and a solution to your problems.
Thanks. I keep on schedule thanks to Alexa 😀 I have a lot of dr appts but also a lot of hobbies and I’m in a online groups and exercise. I also sell on etsy and am a Bible reader so I’m busy and just treat this med stuff like a job. Of course the sleepless nights are the worst part of it. Not much of a tv person as I’m online too much esp when I can’t sleep😆
Everyone with epilepsy must understand the risks of stopping seizure medications abruptly or too quickly. I made that mistake at 15, thinking I knew better, and it nearly cost me my life. I ended up in status epilepticus and was placed in an induced coma for eight months. I lost all my memories, with my first recollection being March 14, 1971— the day a hit-and-run drunk driver caused my father to become a C-5 complete quadriplegic.
As @motobee pointed out, it is critical to never stop seizure medications without proper medical guidance. I had a psychologist friend who experienced status epilepticus in his driveway—not due to stopping medication but because it can happen unexpectedly. Unfortunately, he fell behind his garbage cans, and no one was there to help him, leading to a tragic outcome.
It's imperative that people take our warnings seriously. Stopping these medications quickly or without a doctor’s supervision can have devastating consequences. I'm not saying it always happens but why take a potentially deadly chance. Please prioritize your health and safety.
Take care,
Jake
I have been on Keppra since 5/12/25. This week I have had multiple hallucinations. Contacted my neurologist. His response was just tough it out this will eventually resolve itself. Seriously!! Anyone else have this reaction and lack of empathy?