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.

@racinemike

I have been taking keppra for a year now. My current dose is 3,000mg of extended release every day. I have had anywhere from mild seizues to a Grand mal seizure which nearly took my life. I also have advanced alzheimers. I have not had one seizure since starting keppra. My ability to function on my own again is all thanks to keppra. For me it has been a miracle drug ( with side effects). I don't know how much time the drug will buy me but I will enjoy the time I have been given back.

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How many seizures have you had in total? When did they start? Seizures can be reoccurring or isolated. In my case, I had 2 seizures in a years time and now have not had one in another years time and am weening off Keppra. My point is we do not know if it is the pills stopping a person from having seizures or just the body itself just not having seizures anymore. The body heals itself sometimes and sometimes not. We just do not know. God Bless!
ray hippele

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@motobee

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

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@hippele
Admittedly we don't know but I wouldn't stop my medication after only being seizure-free for one year. I doubt you’ll find any physician who would advocate your decision. Are you going to get a neurological exam or EEG & MRI before stopping?
One problem is if you ever start having again they my not be so easily controlled. Seems chancey to me.
Just don't stop it abruptly.
I hope it works out for the best but be prepared.
Take care,
Jake

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@jakedduck1

@hippele
Admittedly we don't know but I wouldn't stop my medication after only being seizure-free for one year. I doubt you’ll find any physician who would advocate your decision. Are you going to get a neurological exam or EEG & MRI before stopping?
One problem is if you ever start having again they my not be so easily controlled. Seems chancey to me.
Just don't stop it abruptly.
I hope it works out for the best but be prepared.
Take care,
Jake

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yes,I agree, thanks so much... still on it and so far so good.

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@royanthony

Hi Lisa, we've communicated back to December 24th of last year regarding sleep. So, this is just an update. My insurance company finally agreed to partially pay for Ambien, the Brand name of Zolpidem, which I've been taking for years. I got a call from my pharmacist asking if I really want to make the change? Ambien cost is $120 for 30 tablets which includes my co-pay. With Zolpidem, I pay $11.18 with tax for 30 tablets. So, I guess it's still the Z for me. I hope you enjoy your weekend.

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I find that if I take the entire 10mg of zolpidem at once I only sleep 5 or 6 hours. I’m anemic so I really need my rest, so what I do is take 2/3 of the pill at bedtime, then when I wake up I take the other 1/3 and catch a few more hours of sleep. This works well when the generic they give me is a long tablet and not a round one.

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@motobee

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

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I appreciate the follow up and your experience with Zolpidem. Like you, if I take the whole pill at once, I might get 6 hrs sleep, max. I welcome the suggestions on the 2/3 & 1/3 split. It seems I'm only able to get the round pill version, but I'll try anyway.

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@motobee

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

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Husband started on Levetiracetam (Keppra) 1 week ago after experiencing 2nd tonic-clonic seizure in 5 months. He's experiencing very poor mental health - is this your experience ? Does this go away after a few weeks of medication ???

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@dollynz

Husband started on Levetiracetam (Keppra) 1 week ago after experiencing 2nd tonic-clonic seizure in 5 months. He's experiencing very poor mental health - is this your experience ? Does this go away after a few weeks of medication ???

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@dollynz
It's important to note that mental health issues can be a common side effect of Keppra. Patients may experience irritability, aggressive behavior, anger, and various mood issues, including anxiety and depression—often referred to as “Keppra Rage.”

I recommend considering vitamin B-6; many have found it beneficial. It’s worth discussing this and the appropriate dosage with your doctor or pharmacist.

Interestingly, behavioral changes in some patients often improve or even resolve completely after several weeks to months of use. I only remember having experience with first-generation anti-seizure medications and not with second-generation drugs like Keppra, I encourage others who have taken it to share their experiences.
Take care,
Jake

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@dollynz

Husband started on Levetiracetam (Keppra) 1 week ago after experiencing 2nd tonic-clonic seizure in 5 months. He's experiencing very poor mental health - is this your experience ? Does this go away after a few weeks of medication ???

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I have been taking Keppra 750mg for about five years; I have been taking vitamin B-6 50mg and calcium 500mg daily due to the side effect of Keppra.

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@dollynz

Husband started on Levetiracetam (Keppra) 1 week ago after experiencing 2nd tonic-clonic seizure in 5 months. He's experiencing very poor mental health - is this your experience ? Does this go away after a few weeks of medication ???

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@dollynz
Good Afternoon!
I can relate very well to your husband's experience. By the end of 2024, I had experienced 3 tonic-clonic seizures and status epilepticus just before Christmas, which led to starting Keppra. This medication has controlled my seizures effectively, and I've been seizure-free since then 🙏! However, I also experienced some side effects, with worsened memory being one of them. But with the medication fine-tuning process my doctor is doing, the side effects have gradually improved. Over the past 6 months, he has been safely reducing my dosage in small increments while monitoring me with regular EEGs and other tests. My memory has improved, but hasn't fully returned to pre-Keppra levels (I was previously only taking pure CBD - Epidiolex). As the immunologist referred by my neurologist explained to me recently, all anti-epileptic drugs (AEDs) have the potential to reduce neuronal activity, which accounts for cognitive changes. This happened to me not just with Keppra, but with other AEDs I've tried before.
It took over five months for my body to better adapt to this medication. The initial period was challenging, with multiple side effects that made me want to discontinue Keppra. However, my doctor's encouragement and support gave me the confidence to persist, and I'm incredibly grateful for that guidance today.
I'm curious to know what medication your husband was taking before starting Keppra? Has he had any seizures since the start of Keppra? And aside from the memory issues, has he noticed any other side effects?
Sending you both my best wishes and hoping things improve soon!
Chris

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@ysv12345

I have been taking Keppra 750mg for about five years; I have been taking vitamin B-6 50mg and calcium 500mg daily due to the side effect of Keppra.

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Thanks for sharing @ysv12345
As @jakedduck1 has already mentioned many times, Vitamin B can help with behavioral and mood side effects of Keppra. Curious to know - why have you been taking calcium? Do you have any osteoporosis issues?
Thank you!
Chris

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