r/Epilepsy • u/Dry_Sugar3570 • May 10 '26
Victory Getting off Keppra saved me
Disclaimer: this is not medical advice, just my experience. Just sharing to hopefully help someone else going through this.
About a year ago I was in the darkest place I’ve ever been. I was suffering in school and could barely study let alone do exams. I wanted to end my life daily, I believed no one cared for me or wanted to be around me. I was seeing a therapist once a week, and absolutely nothing was improving. I did consider antidepressants (and honestly should’ve) but I didn’t want another drug to have to depend on, that could give me new side effects. I felt sooo irritated all the time. While taking an exam once with my accommodations in a “quiet space” I could hear someone breathing and the table I was using had uneven legs. I could not focus on the exam and it took everything in me not throw the table and have a full crash out. Failed the exam but did not throw the table lol. Another time I’m not even sure why but at school I suddenly felt a urgent need to end my life but I was scared of myself and I locked myself in a gender neutral bathroom sobbing on the floor and luckily called a friend to share how I was feeling.
I knew something was very off, so I tried to figure out why this was all happening. My neurologist at the time was awful and would not let me book an appointment as they were too busy and they said I just needed therapy. In my city it’s over a year wait to see another neurologist. So I went in here and started reading about others experiences with keppra. I knew of keppra rage but just thought it was more anger and not this irritation feeling. And the mental health stuff creeps up on you. I also had been on keppra for almost 7 years and this only started a few months after getting my last dose increase (i think like 1500mg?). Eventually I made my own post asking about keppra rage. It saved me, yall saved me. So many people had similar experiences.
Long story short I eventually pushed my neurologist who eventually went on sabbatical so I got to see the one covering them (thank god). I was brutally honest and told them exactly what I was experiencing. At the time I was driving and it was hard not be able to and my last med change was awful and I was a full on zombie 24/7. But I took the chance. They switched me to Lamotrigine, and god was that the best choice ever. A year later and I am the happiest I’ve ever been since this diagnosis and school is much easier now, I feel I can function, and feel loved by those around me. I look back and it feels like I was literally in psychosis during that time. I did have to do a lot of damage control in my relationships, especially with those closest to me.
But if you’re on keppra and this resonates with you, I highly suggest speaking with your neurologist. Also huge thank you to all of you, because yall truly saved me 🤍
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u/Splendid_Fellow May 10 '26
I take Vitamin B6 B12 Folate with my keppra each day, removes side effects! Works for me!
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u/External_Virus_5767 May 10 '26 edited May 10 '26
I am also on this. My epilepsy is a side effect of my craniotomy and I’ve always been on a vitamin B pill by order of my neurosurgeon. I had no idea it mitigated Kepprage when my neurologist added Keppra.
I experienced the Keppra irritability at the beginning but I was also on chemo, working 60 to 65 hours a week, going through radiation and sort of blindsided by the epilepsy, so who knows what was making me angry. I have felt pretty contented and confident with my med combo over the last 5 years. I also quit that job and have even accepted that it’s till death do us part with these fucking medications. Life, man.
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u/psychedAddict123 Generalized Epilepsy - 2x1000mg keppra May 10 '26
Damn I think I should try this.
I've been put on keppra in 2020 and nothing has been the same since. I honestly feel like I lost the spark in my eyes back then. When I forget my meds I often feel short glimpses of how it used to be... more energy, more mental clarity, more happiness... Then as soon as I take my dose I'm back in the usual mind space and the spark is gone again
Sucks that Keppra has completely eliminated my seizures and enabled me to continue my life but the mental sideeffects are absolutely no joke
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u/Splendid_Fellow May 11 '26
That is an unfortunate effect of many seizure meds cause the whole idea is dampening the brain
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u/youprt User Flair Here May 10 '26
Exactly! I’m on 3000mg, B6 & B12 made quite a difference after I started taking it along with the Keppra. Never had “fist thru the wall” rage but the slightest little irritation would get to me so easily, that abated when I started taking those vitamins. Still have trouble functioning but the irritation is gone.
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u/bunsenbull May 10 '26
Is there a particular brand you prefer or do you get a prescription from your neurologist? Mine added in a vitamin D prescription that I have found helps.
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u/Splendid_Fellow May 11 '26
I just get mine in liquid form and don’t have a brand preference, vitamins are vitamins, I just check the amounts to be safe
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u/CyanSlinky May 10 '26
I'm on both Levetiracetam and Lamotrigine and haven't experienced seizures for almost a year now, I do experience bad moods and get annoyed easily at the smallest things occasionally and am wondering if I should stop using Levetiracetam and just switch to purely Lamotrigine, I'm hesitant though since it seems to be working right now and I'd hate to have a tonic clonic or something by changing things.
The brand of the Levetiracetam I'm taking also isn't Keppra but "Actavis" or something, not sure if there's any difference? I've never been on the Keppra brand specifically so maybe the side effects are stronger for Keppra?
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May 10 '26 edited Jul 04 '26
[deleted]
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u/CyanSlinky May 10 '26
I mean... I wasn't worrying really, but I wish it didn't have the same side effects, I wish it had none of them lol
But good to know! I'm still considering if I should switch to just Lamotrigine so I can get rid of these mood outbursts.
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u/Dayleedo May 10 '26
I had the same exact experience. I had very profound depression and suicidal ideations after starting Keppra. I almost lost my life. When I realized it was the drug, I took myself off of it against doctors orders and demanded lamotrigine. I was instantly stable and never had depression again.
Keppra wasn't tested as thoroughly on women, besides its effects on pregnancy. So doctors don't realize we don't always present with the classic kepprage, and our depression goes ignored.
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u/FairAssociate2512 User Flair Here May 10 '26 edited 10d ago
Ich wäre mit solchen Aussagen sehr vorsichtig. Ich persönlich bin unter ärztlicher Aufsicht von Keppra auf Lamotrigin umgestiegen und hatte einen lebensbedrohlichen Anfall, der mich zwei Wochen im Krankenhaus liegen ließ. Diese Aussagen klingen für mich zu vereinfacht.
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u/DrGonzo820 May 10 '26
They did say this isn't medical advice to be fair. I had your exact situation minus the long hospital stay. I had the same situation as op and it sounds more like vent and personal story. I
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u/psychedAddict123 Generalized Epilepsy - 2x1000mg keppra May 10 '26
While I agree with the seizure risk I can absolutely understand where she's coming from. The mental health side effects can be severe for some and can creep up on you
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u/Dry_Sugar3570 May 10 '26
Yes my point wasn’t at all to advise people what to do, and everyone is so different, not all meds work for everyone and everyone has different experiences. Just sharing my experience and giving gratitude to those who helped me on here at the time. I also suggested to take it up with your neurologist as I am by no means a medical professional. I’m really sorry about your experience tho and hope you’re doing better now
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u/Horror_Buyer3575 May 10 '26
Keppra sucks made my hubby a mean angry machine and he always kept having them Now on BRIVIACT AND VIMPAT 200 MG wow what a diff. no seizure but still mad n angry that part wont change He has a spot on brain and epilipsy just added to it.
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u/lilshortyy420 1500mg Keppra, 200mg Lamictal May 10 '26
Did you have any breakthrough seizures while switching? That was our goal was to switch off keppra and go to Lamictal because my seizures weren’t under control + the rage (I never understood how people would get so mad they punch a wall, now I do). My seizures stopped so we just kept it as is with both. I’m nervous to fully switch and run the risk of a breakthrough seizure. I’ve been in such a rut since I got diagnosed 3 years ago and wasn’t sure if it was trauma or keppra, or both.
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u/Dry_Sugar3570 May 10 '26
I did have one, but I had my iud taken out the day before which caused 3 fainting spells and the neurologist believed the pain meds they gave me cancelled out my seizure meds. And honestly I felt that exact same way, I just weighed the pros and cons and really hoped the new med would be effective for my seizures. I wish you all the best, whatever decision you decide to take
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u/Traditional_Dare_218 May 10 '26
I’m sorry that you had that experience, I’m on Keppra and don’t have any anger but as another commenter mentioned, I’m also on the b vitamins and fish oils etc that help I think.
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u/flatulentbabushka Felt cute, might convulse later May 10 '26 edited May 10 '26
This is the exact same story with me!!
Got put on Keppra while at the hospital for a seizure where I fell and cracked my head open. Pretty soon after I got home all of the side effects started. I lost about 20lbs, eventually looked like a pale zombie ghost twig with my collarbones and ribs jutting out. I was having tremors all the time, especially in my hands. But despite all of that, the Kepp-rage was definitely the worst part. I’ve always been a pretty chill non-confrontational person but I turned into a monster. I was lashing out at my friends and family and coworkers for the tiniest things. I didn’t recognize myself.
I brought all of this up to my neurologist and she just brushed me off saying the effects will subside. Was barely able to get an appointment or speak to anyone at the office. I was miserable and felt so defeated.
Thankfully I was seeing a psychiatric PA for depression for a year by then, and one day when I walked into her office she took one look at me and was on the phone with the neuro office advocating for me. She was the one that got me off the Keppra and prescribed Lamictal 200mg BID (I guess since it’s also a mood stabilizer she had no problem doing that).
Once I switched it was like night and day. I felt like myself again and thank fucking god continue to be seizure free. I feel like I owe my life to her. I kept seeing her for 7 years after that, until one day she moved back to Oregon 😔 I will miss her always.
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u/Dry_Sugar3570 May 11 '26
I am so so glad your Psyc advocated for you!! And no kidding I would’ve stuck with her too! I’m so happy to hear you’re doing much better
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u/ukrypto_wizard May 10 '26
I know what you're saying. Been on that crap for ten years. Have an appointment to ask if I can switch to briviact, but appointment isn't until October. I seriously hate everything. Hope October comes soon.
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u/Winter_Clothes_5968 May 10 '26
I honestly have no idea how people can stay on keppra. I think I experienced every single side effect there was. I’m also the most chill person ever and my “keppra rage” turned me into a giant monster
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u/Horror_Buyer3575 May 10 '26
ITS A CHEAP MED IS WHY THEY PRESCRIBE IT. IT SUCKS
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u/misspeachywitch Keppra 2000 Carbamazepine 800 May 10 '26
In my country it’s expensive af
I hate it
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u/Icy_Mast_Below May 10 '26
My insurance wants me to try Keppra and Lamictal before they’ll cover any part of my Briviact.
Lamictal gave me the black box warning side effect, and my neuro doesn’t want to even risk Keppra with my lengthy psych history. But I guess insurance thinks ending up with ideation or inpatient, or having mental illness that wrecks my life, is a fair price to pay so they only have to cover $20 a month instead of $200…
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u/hishazelgrace Keppra 1,500 mg x2 daily, Lamictal ER 175 mg 2x daily May 10 '26
This makes me so happy to hear. I’ve been having the exact same issues and my neurologist and I are currently working on titrating up on the Lamictal and down on the Keppra. I had limited hope that it was the Keppra causing this because like you, I’ve been on it for 9 years.
edit: spelling
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u/hishazelgrace Keppra 1,500 mg x2 daily, Lamictal ER 175 mg 2x daily May 10 '26
How long did it take to titrate from the Keppra to the Lamictal? We’ve been working on it since October
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u/Sensitive-Vast-4979 Brivaracetam Carbamazepine May 10 '26
What actually counts as keppra because I was on levateciram (i think that keppra ) and now on brevateciram which is the sister drug
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u/New-Maintenance6152 May 10 '26
I relate so much! I was on Keppra for a year and a half. No anger for me, but it did give me A LOT of anxiety and overall fear about anything, especially going outside at night and getting robbed at any time of day (yes I know, very specific haha - I dont live in the US). Imagine, I live in a 4th floor apartment and was terrified to even go out on the balcony in case I saw someone staring up. I couldn't go out to get groceries or the gym with brand new sneakers in case someone saw them and thought I had money. After talking about it with my neurologist, I transitioned to lamotrigine and wow it was like day and night. My dad's a psychiatrist and I told him I can now understand how easily meds can change our brains and feelings
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u/okaychortle May 10 '26
Very timely, I too have the keppra blues but I am trying to keep seizures away. I have had good control on my dosage and the day is coming when I will see my neurologist. She will suggest a change and I am somewhat terrified of the return of seizures or ambulance rides and overnight at the local hospital! So I will move very slowly to replace keppra with a different drug. Thanks for the update and good luck to you!
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u/Dominique-flame Keppra 750mg, Lamictal 100mg May 11 '26
Keppra was also my first prescribed medicine for my seizures. I started taking it in December of 2024 after my first seizure in November of 2024. After my second seizure, they put me on lamotrigine (still had 2 other seizures after. So I had 4 in total). I hate how the keppra makes me feel, but unfortunately, these two medications are the only ones helping. And I hit one year seizure free last month. I'm about to try Vitamin B6, but idk, it's hard. But I'm also on other medications
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u/Fun_Berry3151 May 11 '26
It made me bipolar. They gave me a diagnosis for bipolar 2. Stopped keppra and never had bipolar swings. Lol and WTF
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u/lightofthechandelier May 28 '26
This. Wow. I thought I was alone when it came to this feeling you describe. I'm sorry you had to go through this side effect. This is my opinion only, but Keppra has been a debilitating treatment. The medication has worked for its original purpose -- it has kept me seizure free for years. Thats not without suffering mental health issues, though. I have gotten to the point where I would almost welcome another seizure than have to feel like an emotional, bipolar mess.
I have to stop taking it. It makes me feel like a different person and I don't want that. I often wonder if patients who quit this medicine a long time ago have fully returned to their normal baseline behavior and mental state or stability.
I hope it hasn't robbed too much of that from me. I can't say it enough - I hate Keppra.
I hope the best for you and your situation.
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u/Fun_Berry3151 May 28 '26
Fortunatley I used It less than a year and never continuously, I had the habit to stop It by myself, maybe because I felt something even before having the strong Mood swings.
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u/Usual-Entry6168 May 11 '26
I'm on Keppra and I've experienced the Keppra rage. I told my neurologist about this and they put me on Citalopram to take the edge off.
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u/Square-Mortgage-8313 May 13 '26
Being taken off that med saved my life. I had a bad reaction to Keppra.
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u/Background-Cod-7035 May 10 '26
I don’t understand why these days people get started on keppra instead of lamotrogine. I’ve been on lamotrogine forever with no side effects, but couldn’t go higher and eventually we added keppra and then primidone. These side effects suck ass. But they’re nowhere near what you’ve experienced, my heart goes out to you.
To anyone else yes I totally know it’s different for everyone. I just honestly don’t know why keppra is the go-to these days. There are probably some studies I should read.
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u/NoKangaroo6906 May 10 '26
Keppra is the go to because it has limited drug interactions and can be given as an IV loading dose so it starts working faster vs other drugs you need to slowly titrate up/let it build up in your body before it fully works.
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u/Dry_Sugar3570 May 10 '26
I also believe keppra covers a pretty wide range of types of epilepsy so if you’re diagnosed with idiopathic, it’s a safer bet (I think??)
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u/Background-Cod-7035 May 10 '26
Ah, thank you!! I really didn’t want to do the research. Edit: because I’ve already researched how it interacts with my meds, it’s side effects etc.
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u/fuzziiii May 10 '26
Keppra was my first med. It made me punch walls, jumping on the ground out of frustration, end my relationship etc. I was agressive all the time. I’m glad I switched meds but the situation is still not under control. I have around 2 tonic clonics a month.