1. < Epilepsy & Seizures
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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 Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Sep 6 8:39am
In reply to @ecacho73 "Hello, I had just finished #15 out of #18 immunotherapy (Nivolumab) treatments for metastatic melanoma. It..." + (show)
Profile picture for ecacho73 @ecacho73

Hello,
I had just finished #15 out of #18 immunotherapy (Nivolumab) treatments for metastatic melanoma. It had induced encephalitis which caused seizures. I was hospitalized for 6 days. I couldn't speak, walk, or recognize anyone. They put me on high dose prednisone and after a couple days I was better. This was a month ago. Im on 6 anti-seizure meds a day, Keppra and Vimpat, along with prednisone. Im in the process of tapering down on the prednisone and Keppra, however, I cant drive until im off all of it. I walk with a limp and forget alot of things but Im in remission.

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Hi @ecacho73 !
Welcome to our group of Epilepsy & Seizures at Connect! I see you've already joined the Melanoma & Skin Cancer group at Connect too, mentored by Susan — @grammato3 — which is great.
What you've been through is a lot — the encephalitis, the hospitalization, temporarily losing the ability to speak, walk, and recognize people. That must have been terrifying. At the same time, being in remission from your melanoma is genuinely wonderful news, even while you're still working through everything else.
Your path into epilepsy is a bit different from many of ours here, since it emerged as a complication of cancer treatment — though you're not entirely alone in that, as some members have also developed epilepsy following a brain tumor or other underlying conditions. Still, your journey is uniquely challenging, and I'm glad to have you here.
How are you feeling about the tapering process of prednisone and Keppra so far?
Welcome again!
Chris

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1 reply
Profile picture for Jake
Jake | @jakedduck1 | Sep 6 6:23pm

@ecacho73
Sorry to hear about all you've been through. How many seizures have you had?
What other antiseizure medications are you taking?
Aren't you or your doctor concerned about potential future seizures?
Take care,
Jake

REPLY
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Sep 7 10:23am
In reply to @santosha "Hi @ecacho73 ! Welcome to our group of Epilepsy & Seizures at Connect! I see you've..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @ecacho73 !
Welcome to our group of Epilepsy & Seizures at Connect! I see you've already joined the Melanoma & Skin Cancer group at Connect too, mentored by Susan — @grammato3 — which is great.
What you've been through is a lot — the encephalitis, the hospitalization, temporarily losing the ability to speak, walk, and recognize people. That must have been terrifying. At the same time, being in remission from your melanoma is genuinely wonderful news, even while you're still working through everything else.
Your path into epilepsy is a bit different from many of ours here, since it emerged as a complication of cancer treatment — though you're not entirely alone in that, as some members have also developed epilepsy following a brain tumor or other underlying conditions. Still, your journey is uniquely challenging, and I'm glad to have you here.
How are you feeling about the tapering process of prednisone and Keppra so far?
Welcome again!
Chris

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Good afternoon, @ecacho73
Searching and trying to learn a bit more about cancer treatment related to seizures, I found that Nivolumab has been documented as a cause of PRES (Posterior Reversible Encephalopathy Syndrome) — a temporary but serious brain condition, in which seizures occur in the majority of cases. I shared more about this with @mommacandy, who is also undergoing cancer treatment: https://connect.mayoclinic.org/comment/1665319/
I understand your situation was specifically encephalitis rather than PRES, but they're related conditions — both involve the brain reacting to immunotherapy drugs like Nivolumab, and both can cause seizures. I share here a study on Nivolumab-induced encephalitis that might still be of interest:
Immune Checkpoint Inhibitor Induced Pericarditis and Encephalitis in a Patient Treated With Ipilimumab and Nivolumab for Metastatic Melanoma" (PMC/Frontiers in Oncology, 2021):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8696256/
From what I've read, both encephalitis and PRES are usually reversible, especially when they respond well to treatment the way yours did with prednisone — that's actually a really good sign. Every case is different, of course, and only your care team can say for sure what to expect for you specifically, but the research is genuinely encouraging.
Has your medical team shared what your options are going forward — for example, is there a possibility of switching to a different melanoma treatment that wouldn't carry the same risk of triggering encephalitis again?
Chris

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