Side effects from Keppra?

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

@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

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

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.

@rustyjones
I see you're taking Keppra to control seizures? Has it helped decrease their frequency? Have you been taking it longer than a month?
I wonder if your dose could be at a toxic level? Or if any other medications you are taking could contribute to the drowsiness?
You should contact your physician or pharmacist for a medication review un-less you just started it. After a month or so the drowsiness may decrease.🤞Although in some people it can take months.
Take care,
Jake

I am glad people are writing about keppra side effects Just last night my wife was complaining to me that I sleep all the time I take 1500 mg of keppra in the morning and 1500 mg of keppra at night and when we sit down to watch tv I go right to sleep. I also as I am thinking about I it fall asleep every time I try to watch tv it does not matter night or day I take about 15 medications in the morning and I try to tell my wife It is the meds that make me want to sleep I take a lot of meds I think 15 in the morning maybe more and that's why I want to sleep actually I don't want to sleep I try to fight it but the sleep wins out I am 74 I thought it was my age that was putting me to sleep. I also noticed that my words coming out just don't sound right to me and also, I was walking to the car with my wife and told her I was weaving all around as I was trying to walk

@sunny18
Welcome to our group!
Yes, Keppra can definitely cause mood-related side effects for some people. Thankfully, I haven't experienced those since starting Keppra alongside Epidiolex in December 2024.
As my doctor reminds me, everyone responds differently – what works well for one person might not work for another. Side effects vary from person to person and often depend on the dosage prescribed. When I first started Keppra at a higher dose, I had several side effects (not mood-related ones), but they became much more manageable once my dosage was reduced and customized.
For example, Tegretol (carbamazepine) sent me into a depression, so I had to switch to something else. But I know many people who do really well on it!
I'm curious – what kind of epilepsy do you have?
Chris

I had to stop keppra. Bad side effects. I now take lamotrogine. Get a good neurologist. If yours isn’t listening get a different one. Get one that specializes in seizures. I do not have epilepsy it have. Seizure disorder.

@lisalucier

And yes, the heavy dose seems to be necessary. As the Keppra dose increased, the severity of the seizures decreased. The first seizure generalized and I woke up on the floor. The last seizure, just the left half of my tongue vibrated. (I can’t replicate that consciously. ) And the difference in seizure intensity seems to be the amount of Keppra needed to get control.

@lisalucier

I take a heavy dose of Keppra extended release, 1500 mg 2x a day. At the beginning of this, (after the meningioma, stroke, surgery which started the seizures) I would have an occasional seizure when the medication was wearing off, just before the next scheduled dose. But the switch to extended release ( recommended by the phlebotomist) apparently evened out the med’s so that I didn’t get the ‘dip’ and my last seizure (knock on wood) was in 2017.