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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I am caregiver to my x-husband. He is in a memory care facility and they sent him to a "behavioral clinic" due to "aggression", which I have to question right off the bat. This clinic is almost two hours from my home, and the first time I made the trip, I was stunned at his condition. In a wheelchair, could barely lift his head, did not know who I was. They claimed they took him off all meds to start "fresh". Ok - they're the professionals. Two weeks later I went back - now he's worse. Now he's on Keppra because of his history of seizures. Huh? He's never had seizures. They found him unresponsive once - sent him to the hospital, which is literally next door, they sent him back saying they could find nothing wrong. This could be the "seizure" they are basing this on. I am outraged, but they tell me this is his "new normal". They send him to a new memory care facility that I had found. But now he is always in a wheelchair, doesn't talk, has no idea who I am, won't even open his eyes. These new people have no idea what he was like, so to them, this is normal. I explain to them that it is absolutely NOT normal, and make my wishes know to wean him off Keppra. He was getting 500mg twice a day, and the NP this past Monday started 500 in AM, 250 in PM. On Wednesday he is now severely dehydrated, so he is put in the hospital. I don't know if it is the fluids, the 250mg decrease in the Keppra, or a combination, but although very thin and in a hospital bed, he is alert, talking, and knows who I am. And eating. Keppra seems like an awfully powerful drug to put someone on when the clinicians didn't know his history. To me, it honestly looked like they gave it to him to keep him quiet. He was obviously over medicated to my eyes. The NP at his new facility wants to decrease 250mg every two weeks, and from what I am reading here, seems right. Any opinions from users? Thanks for helping me out - I have learned so much from reading these kind of forums.

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Hi @cashelton
I did not experience Keppra, but I also became an ill person in my bed most of the time while taking Vimpat. Since the neurologist at that time did not want to change to another AED, I went to get a second opinion. It was very worthwhile and I have changed doctors and medication.
Stay strong! My vibrations to both of you.
Chris (Santosha)


I've had a seizure disorder for 57 years and the limited information you provided, especially about Keppra doesn't sound consistent with Epilepsy, seizures, or Keppra use to me. Hopefully some Keppra users will contribute some of their experiences.
Drowsiness, mood disorders including aggression and muscle weakness are side effects of Keppra. Thirst is another side effect. Is your ex vocal and able to convey his needs and concerns regarding hunger, thirst, pain or other needs? Perhaps the Keppra caused him to be dizzy, another potential side effect, and the wheelchair is for his safety but it shouldn't cause him to not be aware. I'd be squawking too. His dose isn't that high but it depends on other conditions, medications and how sensitive he is to medications?
Was he given any of the usual tests for seizures like medical history, neurological exam, EEG, MRI/CT, cardiac or blood tests?
Vitamin B-1 may help improve his aggression. Do you know if he was found seizing, unconscious, postictal (confused) or asleep?
I hope you will keep us informed as to his condition/diagnosis.
Take care,

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Thanks for your reply. No, he can’t convey what he needs. He last lived in my home from 2020-23. No seizures, no epilepsy. I highly doubt the clinic did any of the tests you mentioned. They would have told me - I think. I am his MPOA. I’m pretty secure in saying they did not. It was just such a jolt to see him “zombie-like”, I was angry, sad, helpless. What do you think this drug would do to someone who did not need it? I hope he will continue to improve as the dose is decreased.

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