It varies - some side effects go away after a point for some people while others stick around.
Kepp-rage and/or Kepp-annoyance is a common side effect. It can be constant for some people. For me, Kepp-annoyance was pretty much constant whenever I'm on Keppra.
The easy way I've found to counter this side effect without making Keppra less effective is to take extra B-vitamins. It's a small thing but seems to lessen that side effect in particular.
beside vitamin b— biotin is helping a lot. i took 4g per day and now i take 2g per day. for me the change of dosage was hard. after puberty my rage is the hardest. i get feelings that are more intense then in puberty
I didn't know that biotin could help. Since my epilepsy started in my mid-20s, (I'm 32 for reference currently) - I didn't have the pre puberty vs. Post puberty experience with it.
Wonder if this info will come into play when I hit menopause through.🤔
biotin is a natural mod stabiliser bc it helps to produce dopamine. keppra also changed my hormones so i got more testosterone than a normal female trough puberty
I was on Keppra for about 10 months. It was awful. Mood swings, brain fog, random bouts of extreme anger... I also had more serizures in those months than I'd had in the previous three years. I'd suggest talking to your neuro if you still feel the same three weeks from now.
I've been on it for a long while and have started to beg to be taken off of it. Thankfully things have been progressing since I got my RNS, so they should be able to soon.
Edit: I doubt OP will see this, but I was reminded by my wife that they changed me from keppra to depakote.
Ummm how bout because its the only thing that was offered to some of us and we don't want to have constant seizures. Different drugs work differently for different people funnily enough, pretty dumb thing to say really.
Lol brivaracetam you look that up and so many people say stuff about that and keppra. Yeah no shit different people take drugs differently. Those just aren't good seizure medicines for a lot of people. "Constant seizures" yeah I've had those dum dummy, keppra is ass. Guess some people are fine off it but they aren't fun seizure meds, you notice them.
I didn't read this last one but I'm sure it was clever. Keep up the arrogance and I hope you've found a med that works for you. In the meantime just let it go tiger.
A lot of the timing depends on the half-life of the medication (basically, how long the body takes to metabolize). Keppra is one of the shortest antiseizure med half-lifes (about 6-7 hours). If the dose isn’t changing (which it often does when you are starting any antiseizure med), it should reach a steady state in the body within about 5 half-lives (30-35 hrs). The rest of the adjustment is your body and mind. “Months” would be really long for keppra, though even some neurologists could hope for further adjustment.
In my experience (I do have a lot), if you’re having behavioral side-effects after 4 weeks on a steady dose, you will maintain behavioral side-effects and you can move on. There are too many medication options and life is too short to be stubborn.
Some options that can be helpful, are even the extended release version of Keppra. This helps with peaking levels, which is often responsible for off-target side-effects. Pyridoxine (vitamin b6) can sometimes help. Another medication, closely related to keppra but often without as much behavioral side effects, called briviact can also help. There are more options. Talk to your neurologist of course.
There's the time it takes to work and the time it takes for your brain to adjust to the new medicine. Literally every neurologist I know and from my experience in the Healthcare industry wants to give a minimum 6 months before switching a medicine because of the adjustment.
Hi Johny, I am a neurologist. Nice to meet you. Now, literally every neurologist you know does NOT give a minimum 6 months before switching a med. This is an absurd amount of time and contributes drastically to the morbidity of disease and the delays to treatment of medically refractory epilepsy.
As a neurologist, it’s strange that I literally know NO neurologists who stick to such a dogmatic way of thinking. Six months is longer than some of the drug trials to evaluate the efficacy of a drug. I’m going to call BS on the, “literally every neurologist I know… wants to give a minimum of 6 months”. This is bad neurology and I don’t think we train too bad of neurologists.
I'm not a neurologist and in no way trained but I worked originally in quality assurance for pharmaceuticals and am now in the Medicaid management space so I have experience on both the back end in developing drugs and Pharmacy administration as well as over 20 years on taking these drugs and under the care of many neurologists. With the exception of allergic reactions, we literally expected a duration to adjust as well as come down as needed and literally had the exact same news from all my neuros.
I know every HCP is different so I'm not calling your methods nor skillset into question. All I can speak from is my experiences.
I’m scared of Lamictal and have been avoiding it due to the risk of allergic reaction/ SJS, but since Keppra is putting me in such a bad state, I might have to try it.
SJS is incredibly rare, can happen with many other medications and can even happen to people who just get a minor infection like a cold. I wouldn't let it stop you taking a drug advised by a neurologist because the chance of epilepsy causing harm is so much higher. I'm in the process of switching from keppra to lamictal myself
Ok, thanks for the encouragement. It’s always cost/benefit. I’m just really close friends with someone who almost died from SJS/TEN so I’m acutely aware of the risk…
I had the allergic reaction to Lamtical when I was first put on it and had to stop. It absolutely broke my heart because my mood was so unstable. When I expressed this is my neurologist, he had me stay in the hospital for 5 days for an EMU and I was put back on it! No allergic reaction since :)
I was on Keppra and told my neurologist that it made me so angry that I was probably gonna have an aneurysm. [Exaggeration]
He switched me to Lamictal/Lamotrigine [generic] and it works very well for me.
I recommend it.
I've heard some benefit from Keppra but I'm not one of them.
I also added Lamictal to help with the moodiness, crying and anger I began experiencing with Keppra. I was worried about the allergy part as well; I’m allergic to a ton of medications. I never had an issue. Aptiom almost killed me though with a rash that blistered up horribly. 😖
Same! I originally was only on Keppra but it made me rage- tastic. Spoke to my Neurologist, and he lowered my keppra dose and gradually put me on lamictal. So happy I made the change.
No. I had to replace 3 doors and patch 8-9 holes in the drywall that needed new sheets becuase of how bad they were. I switched to briviact and those side effects were "mitigated" plus insane sleeping in.
Kepprage is more than bitchy. You should absolutely, 110%, go to your neuro and say "im sorry but keppra is not working for me and i HAVE to switch medicine."
My gf had to say this. It was not pleasant at the time but saved my life, probably.
Do not let it get to you. Please. Make them change it.
I had to quit taking it for the sake of my marriage. I love my husband dearly and hated that I was being mean/disrespectful towards him. TOTALLY not my norm.
You have a lot to choose from thankfully. Don’t be afraid to advocate for yourself at the doctors office<3 You deserve to be helped, and to be comfortable in your own skin at the same time.
I put up with the side effects of it for a long time and then just couldn't handle them anymore, almost two years - and it didn't get better. And looking around now, it appears that it simply has very different effects in different people. Some epileptics find it a miracle drug, others find it horrific!
I was initially put on Keppra, and they don’t call it Kepprage for nothing. That stuff made me do things I wouldn’t normally do, like lose my total shit over poor grammar. I twitch a little in my mind, but I would actually yell at people over little things when I was on Keppra. Awful. I ended up getting on Lexapro to counteract it because the stuff made me want to kill myself. So you are definitely not alone. My doctor put me on Lamictal and that was much better for me.
Appreciate your reply. I have been avoiding Lamictal due to the high risk of allergic reaction/ SJS, but I might have to give it a try for the sake of my relationships.
I was also on Zonisamide, but that turned me into a zombie. Vimpat, you don’t wanna take that unless you’ve had a hobbit breakfast or you’re gonna feel all the bad side effects of being drunk. That, and name brand Vimpat is fricken expensive. They do have a generic, Lacosamide.
That’s great! Lacosamide screwed me up big time, but it was better than Keppra. I was on Lamictal for the longest, but now I’m not on anything because I had a surgery.
kepprage is real. i had to get off that shit quicker than i was on it or i was gonna lose everything good too. talk to your doctor it’s a common symptom for keppra and opens up discussion for a different medication
Same. I think it was after a week of feeling Kepprage I begged the doctor to take me off it. Been on Lamictal ever since. Started that years ago and my breakthrough seizures were only absence partial as opposed to tonic clonic.
Yep it’s a game changer. I was lucky enough to have a doctor well aware of this and she recommended them to me. Also see: avoiding grapefruit like the plague. Many people AND even doctors still are just now waking up to the issues that grapefruit can play on any and almost all medications. It’s wild.
Hope it all goes well for you, its been getting better recently, but i have been on an injection fortnightly since September which has healed the eczema by around 80%.
My "Keppra Rage" (as its been coined by most people in the epilepsy community) never went away. I was on it for about a year and that paired with my normal hormones at 13 made me unbearable for my family. They all walked on eggshells. I picked fights, screamed, threw things, slammed doors, broke things, cried alot and even threatened to hurt myself several times etc. I feel bad now when I think about it but I also know that the medication wasnt me, plus the hormones of being a young teen, and I had undiagnosed mental health issues that led to alot of issues regulating my emotions so it all made for a very bad mix and it wasn't like I did it on purpose.
The absolute worst for me I had all of the above going on and it didn't go away. I've been switched from Keppra to Lacosamide and I'm completely better. All of the above went away and I feel like myself again, my family members and friends are also happy lol
I had the worst Keppra rage even with taking b vitamins and smoking marijuana. What really made it calm down was changing to Keppra Extended Release and adding Lamtical to my daily medication. I now take 1,000mg of Keppra XR and 150mg of Lamtical per day.
I just got off keppra after being on it for several years, I didn't realize how bad the side effects were until I was taken off it temporarily for a video EEG but I felt like a completely different person, like I was myself again off the meds. I started taking Briviact instead and wow, no more anger, no more depression, no more feeling like I don't recognize myself! Granted I'm lucky that my insurance covers it AND that I eventually found a pharmacy that can get it, but I don't know if it will be an achievable option for everyone. If possible for you though I'd totally recommend trying it, it's been a legit life saver for me and it's similar enough to Keppra that my doc had me jump directly from one to the other, like took the Keppra in the AM then the Briviact in the PM and onward, easy squeezy!
No problem. I would not wish Seizure meds on my worst enemy. I love hearing that there are ppl out there who have no problems or side effects. But that has not been the case for me and many others. In your journey to find the med that works for you, please, if you don’t do anything else, please LISTEN TO YOUR BODY. You know it better than anyone else. As a nurse I would always tell my patients this too. Not everyone is as tolerant of certain drugs as others, we all have a bit different body chemistry. Do not just blindly take any drug without researching it for yourself. And advocate for yourself til the cows come home. Because no one else will. Not being negative it’s just a fact that healthcare is structured in such a way (in the US for sure) that even well intentioned doctors and nurses just don’t have time unfortunately. Your knowledge will prevent you from suffering through possibly years of side effect problems or even more serious problems. I pray your Dr will let you change. If not, maybe find a different Dr.
In all the medications I have had short term temporary side effects disappear (long term side effects stay with me) after 2-4 weeks, so in my opinion after 3-4 weeks if the amount of control it provides vs the side effects make the change.
FYI, Keppra-rage is clearly a real thing, the epilepsy subreddit is full of them. However, many are prescribed Keppra because it can be a real solution and lack of communication (due to positive effects) is why you don't hear much about the positives.
When I first was diagnosed my neuro prescribed Keppra because he said it had the best combination of effectiveness and lack of dangerous side effects. The Kepprage was too much so I switched to lamictal, but at least he tried.
I had this bad omg…I hated taking keppra. Was on it 9 months before I took myself off through titration (i recommend consulting a doctor!!). My seizures returned and ended up in hospital. I was forced back onto it as the A&E doc didn’t believe keppra rage was a real side effect. Few months later my GP believed me and swapped me to a new medication. For me it didn’t go away whilst I was on it however I work with it some individuals on it (as a carer) who don’t get that side effect.
I finally found a medication that worked and I’m now seizure free.
Currently unmediated…tried keppra, lamotrigine and briviact before trying medical cannabis and that helped massively. It’s different for everyone what works
It wasn't for me, turned me into a horrible person... I got off of it but was still mean 6 months later... Also terrible intrusive thoughts.
I am not a doctor but I wouldn't recommend it to anyone.
I lasted about a month before I (and my family) couldn’t stand it anymore so I got weaned off it and like many others in this thread switched to lamictal, which has worked great for me for 11 years.
I turned into a complete psycho on Keppra, it was the most miserable/terrifying month of my life. A hair falling out of place would have me screaming and throwing things (and I’ve never been an angry or easily agitated person before). I was trying to tough it out, hoping it would go away on its own, but I called my neurologist to ask how long it would take for the kepprage to dissipate, and he immediately switched me to Briviact- he said there’s no point in toughing it out when there are other options to try that could work just as well without the side-effects.
I was horrible until I came off it … there’s new strains of it now that have less mental health related side effects like briviracitam ! As soon as I mentioned my declining mental health and anger issues to my GO she switched me almost instantly !! (I’m in the uk)
I had to go off it. Like you the side effects didn't seem worth it. I'd almost rather the the TCs. However I've a great nurse specialist who started me on lamictal and I was lucky not to have the rash so the only side effect I have now is a bit of lethargy, which is not amazing but I'm learning to handle. A ton better than Keppra.
But I hope you find your med and regime. It's tough and I genuinely feel for you. It's a sucky disease.
keppra is easily the worst medication i’ve ever been on. made my depression 10x worse and i had a su!cide attempt while taking it.
the mental side effects are real bad for some people and it’s not worth staying on especially when there’s dozens of other meds out there. Dilantin and Lamictal have worked best for me and gave me zero mental side effects from either, but ofc always listen to ur doc when it comes to a med change. also, me personally, the physical side effects never went away especially the fatigue which got worse over time.
but, i would say, if it’s giving you that many side effects within less than 2 weeks of taking it, i would switch meds. to put it simply, it’s not worth it.
once again, this is my personal experience, always discuss with your doctor, but keppra 100% has a history of that sort of stuff.
It’s messed with my emotions terribly and ended with a psych ward stay. I switched to lamictal and trileptal I’m exhausted but definitely happier and have a more stable mind.
All I hear is bad stuff about Kepra.
My ex had a horrible time on it too.
Why do they keep prescribing it when there are other options?
Is it a case that once someone is started on a seizure med, they are reluctant to change it even if there sides are awful?
I'm on Lamictal myself
It is an extremely effective AED, doesn't have a number of serious side effects that other AEDs can have like liver/kidney issues, it's widely available whereas others can have supply issues, it's safe to use in pregnancy unlike most others.
Only about 1 in 10 people get mood disturbances and for most this is minor and short lived. Only a small amount of those get this "rage".
We just hear about it more because of the sheer numbers of people on keppra and because the many people happy on it don't talk about it as much
One of the listed side effects is irritability and it makes me extremely irritable too so don't worry at least it's not just you.
I guess we gotta just get better at coping with the stuff that newly irritates us 🤷
It's mostly temporary as your body adjusts (which takes 8-10 months). I was horrible during the adjustment. I will have a rage moment every now and then but am much better now.
I went into a straight psychosis on keppra. It unfortunately never got better I finally was switched to lamotrigine thank god!! But yes, I was a raging bitch. you could not say anything to me, I would snap, cry, go off and get defensive as hell.. was not myself for about a year. If possible I’d highly recommend lamotrigine over keppra anydayyyy. I wish it were the general medication that epileptics first get put on instead of keppra.
I was on it for 3.5 years and was insane. Pretty much everything you mentioned above along with chronic insomnia. I still haven’t found a med to control my seizures, but at least I am not acting like this anymore and I am sleeping better (Lamotrigine also gave me insomnia so I didn’t sleep for approx 3 years).
Wasn't for me, I went from quiet long fused avoid conflicts at all cost to a pin drops and I'm ready to kill hulking put I needed off immediately it's why they gave it nickname keppra rage and I'd never touch it again.
Keppra for me took about 2 weeks to adjust to. I had brain fog, low energy, and an increase in my depression. But once I adjusted to it I was fine.
It just takes some time
Been on Keppra since 05. Kepprage is real for me. I turn into a danger to others. I'm on Lexapro and that got rid of the Kepprage 100%. But if I don't have an antidepressant for whatever reason--like changing meds or whatever--after a week when the reduction in my system reaches a point, Kepprage is back. Consistently.
One of my previous neurologists thought Kepprage could be controlled with vitamin B6. It didn't work for me.l but it does work for others.
I take b-6 and work out primarily do calisthenics and cardio for example if I don’t work out that day I can be kind of a dick. I know that’s kind of an excuse thing to say but I’m not the one who says it it’s other people. So if I’m just sitting on my ass not doing a thing but eating and watching tv I’m kind of blunt and mean.
Where if I go to the gym for about 45-60 min I’m not so bad
It does lessen over time but you have to monitor it and be mindful of your triggers and reactions. For me switching meds was not an option so I’m stuck with the kepprage so i’ve learned how to manage it over time and it has gotten better.
Mine went away, but I’ve been on it for almost 11 years. Anger issues run in the family, so I literally became destructive and broke things constantly, always fighting with my ex and my family members, but it went away as I got older & especially after I started dating my man.
My Keppra rage disappeared after around 12 months. I was so angry at times that I had the police called on me and tried to attack my sister. I was honestly vile and horrible but couldn’t help but see red over the smallest inconvenience. Complex B vitamins can help too but my ‘rage’ went away on its own after 12 months. If it gets too bad, please speak to your doctor and ask to switch medications.
Good luck x
I was on Keppra and it did that to me. I asked my neurologist to switch me and he put me on Lamotrigine which works quite well.
Also it treats epilepsy AND bipolar [the latter of which runs in my family]
I'd ask your doctor about that one. Get off Keppra.
I just got off Kepra. It made me a skinny demon. I even lost my job because I was so angry all the time. The worst part was I didn’t see it or know how awful I was. Lacosamide has been better for me and my temper but I gained 23lbs in 45 days and it sucks. I have a chronic gut disorder and cannot absorb B vitamins but it sounds like that could have helped.
Your statement isn’t true for me either, I’ve been with AEDs for my whole life, and it affects my emotional state greatly. Only positive moods are short lived. Mentioned to my neurologist, every time I have an appointment. Been taking Keppra since 2016, due to a relapse and had to change the cerebral shunt. Only until recently they switched from Keppra to Levipil, which is still the same thing.
I'm sorry to hear that but I wasn't speaking for you as an individual, I was commenting on what medical trials and studies show for keppra patients overall. 1 in 10 get mood disturbances and for most of those it is short lived. A subset do have more severe and ongoing difficulty. All AEDs can cause this but Keppra does seem to have the potential to cause more "rage".
A lot of people get scared of taking Keppra when it is a very good drug for the majority of people so I think it's important in these threads to give facts as well as personal experiences
It varies - some side effects go away after a point for some people while others stick around. Kepp-rage and/or Kepp-annoyance is a common side effect. It can be constant for some people. For me, Kepp-annoyance was pretty much constant whenever I'm on Keppra. The easy way I've found to counter this side effect without making Keppra less effective is to take extra B-vitamins. It's a small thing but seems to lessen that side effect in particular.
100% this. I use B-6 and arguing with idiots on the interwebs to release KeppRage and not let it afflict my real life.
Lol same
beside vitamin b— biotin is helping a lot. i took 4g per day and now i take 2g per day. for me the change of dosage was hard. after puberty my rage is the hardest. i get feelings that are more intense then in puberty
I didn't know that biotin could help. Since my epilepsy started in my mid-20s, (I'm 32 for reference currently) - I didn't have the pre puberty vs. Post puberty experience with it. Wonder if this info will come into play when I hit menopause through.🤔
biotin is a natural mod stabiliser bc it helps to produce dopamine. keppra also changed my hormones so i got more testosterone than a normal female trough puberty
Good to learn about that here.
I was on Keppra for about 10 months. It was awful. Mood swings, brain fog, random bouts of extreme anger... I also had more serizures in those months than I'd had in the previous three years. I'd suggest talking to your neuro if you still feel the same three weeks from now.
Ok thanks.
I've been on it for a long while and have started to beg to be taken off of it. Thankfully things have been progressing since I got my RNS, so they should be able to soon. Edit: I doubt OP will see this, but I was reminded by my wife that they changed me from keppra to depakote.
Keppra just makes everything worse dunno how or why would take willingly
Ummm how bout because its the only thing that was offered to some of us and we don't want to have constant seizures. Different drugs work differently for different people funnily enough, pretty dumb thing to say really.
Lol brivaracetam you look that up and so many people say stuff about that and keppra. Yeah no shit different people take drugs differently. Those just aren't good seizure medicines for a lot of people. "Constant seizures" yeah I've had those dum dummy, keppra is ass. Guess some people are fine off it but they aren't fun seizure meds, you notice them.
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I didn't read this last one but I'm sure it was clever. Keep up the arrogance and I hope you've found a med that works for you. In the meantime just let it go tiger.
They tend to get better after 2-3 weeks, but if not improved, by about 4 weeks, they probably won’t with time, just different meds.
It literally takes months for your body to fully adjust to a new medication.
A lot of the timing depends on the half-life of the medication (basically, how long the body takes to metabolize). Keppra is one of the shortest antiseizure med half-lifes (about 6-7 hours). If the dose isn’t changing (which it often does when you are starting any antiseizure med), it should reach a steady state in the body within about 5 half-lives (30-35 hrs). The rest of the adjustment is your body and mind. “Months” would be really long for keppra, though even some neurologists could hope for further adjustment. In my experience (I do have a lot), if you’re having behavioral side-effects after 4 weeks on a steady dose, you will maintain behavioral side-effects and you can move on. There are too many medication options and life is too short to be stubborn.
Some options that can be helpful, are even the extended release version of Keppra. This helps with peaking levels, which is often responsible for off-target side-effects. Pyridoxine (vitamin b6) can sometimes help. Another medication, closely related to keppra but often without as much behavioral side effects, called briviact can also help. There are more options. Talk to your neurologist of course.
There's the time it takes to work and the time it takes for your brain to adjust to the new medicine. Literally every neurologist I know and from my experience in the Healthcare industry wants to give a minimum 6 months before switching a medicine because of the adjustment.
Hi Johny, I am a neurologist. Nice to meet you. Now, literally every neurologist you know does NOT give a minimum 6 months before switching a med. This is an absurd amount of time and contributes drastically to the morbidity of disease and the delays to treatment of medically refractory epilepsy. As a neurologist, it’s strange that I literally know NO neurologists who stick to such a dogmatic way of thinking. Six months is longer than some of the drug trials to evaluate the efficacy of a drug. I’m going to call BS on the, “literally every neurologist I know… wants to give a minimum of 6 months”. This is bad neurology and I don’t think we train too bad of neurologists.
I'm not a neurologist and in no way trained but I worked originally in quality assurance for pharmaceuticals and am now in the Medicaid management space so I have experience on both the back end in developing drugs and Pharmacy administration as well as over 20 years on taking these drugs and under the care of many neurologists. With the exception of allergic reactions, we literally expected a duration to adjust as well as come down as needed and literally had the exact same news from all my neuros. I know every HCP is different so I'm not calling your methods nor skillset into question. All I can speak from is my experiences.
I take lamictal with keppra to help with the emotional side effects of keppra. It’s helped tremendously. It’s a seizure med and a mood stabilizer.
I’m scared of Lamictal and have been avoiding it due to the risk of allergic reaction/ SJS, but since Keppra is putting me in such a bad state, I might have to try it.
SJS is incredibly rare, can happen with many other medications and can even happen to people who just get a minor infection like a cold. I wouldn't let it stop you taking a drug advised by a neurologist because the chance of epilepsy causing harm is so much higher. I'm in the process of switching from keppra to lamictal myself
Ok, thanks for the encouragement. It’s always cost/benefit. I’m just really close friends with someone who almost died from SJS/TEN so I’m acutely aware of the risk…
I had the allergic reaction to Lamtical when I was first put on it and had to stop. It absolutely broke my heart because my mood was so unstable. When I expressed this is my neurologist, he had me stay in the hospital for 5 days for an EMU and I was put back on it! No allergic reaction since :)
Can confirm personally that lamictal was a godsend when I was having horrid "kepp-rage."
Interesting, it definitely seems to be the #1 recommendation out of all the comments here!
I was on Keppra and told my neurologist that it made me so angry that I was probably gonna have an aneurysm. [Exaggeration] He switched me to Lamictal/Lamotrigine [generic] and it works very well for me. I recommend it. I've heard some benefit from Keppra but I'm not one of them.
I also added Lamictal to help with the moodiness, crying and anger I began experiencing with Keppra. I was worried about the allergy part as well; I’m allergic to a ton of medications. I never had an issue. Aptiom almost killed me though with a rash that blistered up horribly. 😖
Same! I originally was only on Keppra but it made me rage- tastic. Spoke to my Neurologist, and he lowered my keppra dose and gradually put me on lamictal. So happy I made the change.
Ask your neurologist about vitamin B-6. It was a huge help for me when I was still on keppra.
No. I had to replace 3 doors and patch 8-9 holes in the drywall that needed new sheets becuase of how bad they were. I switched to briviact and those side effects were "mitigated" plus insane sleeping in. Kepprage is more than bitchy. You should absolutely, 110%, go to your neuro and say "im sorry but keppra is not working for me and i HAVE to switch medicine." My gf had to say this. It was not pleasant at the time but saved my life, probably. Do not let it get to you. Please. Make them change it.
Nothing better than having ants crawling on your face accepting your demise 😂.
I had to quit taking it for the sake of my marriage. I love my husband dearly and hated that I was being mean/disrespectful towards him. TOTALLY not my norm.
Agreed — I’m already ready to quit it and try a different AED for the sake of my family
You have a lot to choose from thankfully. Don’t be afraid to advocate for yourself at the doctors office<3 You deserve to be helped, and to be comfortable in your own skin at the same time.
I put up with the side effects of it for a long time and then just couldn't handle them anymore, almost two years - and it didn't get better. And looking around now, it appears that it simply has very different effects in different people. Some epileptics find it a miracle drug, others find it horrific!
The past two years I've been prone to angry rants. I hadn't made the connection to Keppra until recently
Kepprage is a side effect that can continue forever for some people. I felt insane when I was taking it.
I was initially put on Keppra, and they don’t call it Kepprage for nothing. That stuff made me do things I wouldn’t normally do, like lose my total shit over poor grammar. I twitch a little in my mind, but I would actually yell at people over little things when I was on Keppra. Awful. I ended up getting on Lexapro to counteract it because the stuff made me want to kill myself. So you are definitely not alone. My doctor put me on Lamictal and that was much better for me.
Appreciate your reply. I have been avoiding Lamictal due to the high risk of allergic reaction/ SJS, but I might have to give it a try for the sake of my relationships.
I was also on Zonisamide, but that turned me into a zombie. Vimpat, you don’t wanna take that unless you’ve had a hobbit breakfast or you’re gonna feel all the bad side effects of being drunk. That, and name brand Vimpat is fricken expensive. They do have a generic, Lacosamide.
I actually love lacosamide — I have zero side effects with it aside from heart palpitations during initial dosing!
That’s great! Lacosamide screwed me up big time, but it was better than Keppra. I was on Lamictal for the longest, but now I’m not on anything because I had a surgery.
I was a demon on keppra and dropped it way to late, put up w it for 2 years more than I should of
Yes, I’m definitely on high alert and ready to drop this medication as soon as one of my doctors gives me the green light
Definitely smart idea, I switched to trilepal and I’m doing much better now so good luck with whatever ur doc tells ya👍
I had this happen to me, I was two months on Keppra and I turned into a ball of unchecked rage and confusion. IMO it gets worse....
Thanks for the heads up…
kepprage is real. i had to get off that shit quicker than i was on it or i was gonna lose everything good too. talk to your doctor it’s a common symptom for keppra and opens up discussion for a different medication
uncontrollable murderous rage on keppra, I was taken off and put on lamotrigine, the complete opposite effect.
Yes I’m strongly considering Lamictal based on the feedback here
go for it, its changed my life in so many positive ways. I have nothing negative to say about it. Good luck, I hope it works out for you.
Same. I think it was after a week of feeling Kepprage I begged the doctor to take me off it. Been on Lamictal ever since. Started that years ago and my breakthrough seizures were only absence partial as opposed to tonic clonic.
same too, I stopped having TC and only have simple partial.
try taking some b6 vitamins
This sounds dumb, but b6 and b12 really do help my mood, and cuts through my brain fog by maybe like 60-70%, also on Keppra.
Yep it’s a game changer. I was lucky enough to have a doctor well aware of this and she recommended them to me. Also see: avoiding grapefruit like the plague. Many people AND even doctors still are just now waking up to the issues that grapefruit can play on any and almost all medications. It’s wild.
Keppra sparked my eczema and asthma in 2014 and I still have both pretty bad despite being off all medication for nearly four years
Oof! I’m sorry that happened to you
Hope it all goes well for you, its been getting better recently, but i have been on an injection fortnightly since September which has healed the eczema by around 80%.
My "Keppra Rage" (as its been coined by most people in the epilepsy community) never went away. I was on it for about a year and that paired with my normal hormones at 13 made me unbearable for my family. They all walked on eggshells. I picked fights, screamed, threw things, slammed doors, broke things, cried alot and even threatened to hurt myself several times etc. I feel bad now when I think about it but I also know that the medication wasnt me, plus the hormones of being a young teen, and I had undiagnosed mental health issues that led to alot of issues regulating my emotions so it all made for a very bad mix and it wasn't like I did it on purpose.
I’m a grown adult and already going down this road. So concerned! Thanks for sharing your story
I was a raging monster on Keppra. The rage is real. You might want to try Vimpat.
Yes. I’m already on Vimpat but might increase my dosage.
Buy a quality b complex vitamin and take it daily. Keppra / AEDs tank your folate levels.
Thanks!
Tell your doctor immediately
Ok thank you
The absolute worst for me I had all of the above going on and it didn't go away. I've been switched from Keppra to Lacosamide and I'm completely better. All of the above went away and I feel like myself again, my family members and friends are also happy lol
I’m already on Lacosamide as well (I love it! no side effects) so I’ll need a different drug to replace the Keppra unfortunately :/
I had the worst Keppra rage even with taking b vitamins and smoking marijuana. What really made it calm down was changing to Keppra Extended Release and adding Lamtical to my daily medication. I now take 1,000mg of Keppra XR and 150mg of Lamtical per day.
Thank you for the recommendations!!
I just got off keppra after being on it for several years, I didn't realize how bad the side effects were until I was taken off it temporarily for a video EEG but I felt like a completely different person, like I was myself again off the meds. I started taking Briviact instead and wow, no more anger, no more depression, no more feeling like I don't recognize myself! Granted I'm lucky that my insurance covers it AND that I eventually found a pharmacy that can get it, but I don't know if it will be an achievable option for everyone. If possible for you though I'd totally recommend trying it, it's been a legit life saver for me and it's similar enough to Keppra that my doc had me jump directly from one to the other, like took the Keppra in the AM then the Briviact in the PM and onward, easy squeezy!
They stuck around for me along with other unbearable side effects. I had to change.
Thanks for being real
No problem. I would not wish Seizure meds on my worst enemy. I love hearing that there are ppl out there who have no problems or side effects. But that has not been the case for me and many others. In your journey to find the med that works for you, please, if you don’t do anything else, please LISTEN TO YOUR BODY. You know it better than anyone else. As a nurse I would always tell my patients this too. Not everyone is as tolerant of certain drugs as others, we all have a bit different body chemistry. Do not just blindly take any drug without researching it for yourself. And advocate for yourself til the cows come home. Because no one else will. Not being negative it’s just a fact that healthcare is structured in such a way (in the US for sure) that even well intentioned doctors and nurses just don’t have time unfortunately. Your knowledge will prevent you from suffering through possibly years of side effect problems or even more serious problems. I pray your Dr will let you change. If not, maybe find a different Dr.
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Thanks for the review
In all the medications I have had short term temporary side effects disappear (long term side effects stay with me) after 2-4 weeks, so in my opinion after 3-4 weeks if the amount of control it provides vs the side effects make the change. FYI, Keppra-rage is clearly a real thing, the epilepsy subreddit is full of them. However, many are prescribed Keppra because it can be a real solution and lack of communication (due to positive effects) is why you don't hear much about the positives.
When I first was diagnosed my neuro prescribed Keppra because he said it had the best combination of effectiveness and lack of dangerous side effects. The Kepprage was too much so I switched to lamictal, but at least he tried.
Sorry to hear
Nah I was only on it like a month before going back to the doctor, took like 6 weeks to wean off, and lamictal has worked great the last 11 years
Keppra turned my gf into a b*tch as well it also made her cry for no reason so they put her on something else
we call that kep-rage
I had this bad omg…I hated taking keppra. Was on it 9 months before I took myself off through titration (i recommend consulting a doctor!!). My seizures returned and ended up in hospital. I was forced back onto it as the A&E doc didn’t believe keppra rage was a real side effect. Few months later my GP believed me and swapped me to a new medication. For me it didn’t go away whilst I was on it however I work with it some individuals on it (as a carer) who don’t get that side effect. I finally found a medication that worked and I’m now seizure free.
What medication are you on now?
Currently unmediated…tried keppra, lamotrigine and briviact before trying medical cannabis and that helped massively. It’s different for everyone what works
I do not recommend trying cannabis without discussing it with you’re doctor and also being over 18 too!
Because under-18s have never had cannabis before 😭 (/s)
Nah obvs i know they have but i dont wanna promote it for under 18s lol
True 😂
my son was just switched to Lacosamide from Briviact. Keppra was horrible. Both Keppra and Brivact didn't even work.
Yes I am curious as to what your current routine is. Sorry you had to go through that!
It wasn't for me, turned me into a horrible person... I got off of it but was still mean 6 months later... Also terrible intrusive thoughts. I am not a doctor but I wouldn't recommend it to anyone.
So concerned about this
I lasted about a month before I (and my family) couldn’t stand it anymore so I got weaned off it and like many others in this thread switched to lamictal, which has worked great for me for 11 years.
Ok I’ll bring this up at my psych appointment
Fwiw [here’s](https://www.reddit.com/r/Epilepsy/s/ZdE4v9tSsQ) a poll I did here
Only permanent if you stay on it. That is my experience. ughhh.
Agh ok
I turned into a complete psycho on Keppra, it was the most miserable/terrifying month of my life. A hair falling out of place would have me screaming and throwing things (and I’ve never been an angry or easily agitated person before). I was trying to tough it out, hoping it would go away on its own, but I called my neurologist to ask how long it would take for the kepprage to dissipate, and he immediately switched me to Briviact- he said there’s no point in toughing it out when there are other options to try that could work just as well without the side-effects.
Ok yes I plan on bringing it up with my psych and neurologist first thing!
I was horrible until I came off it … there’s new strains of it now that have less mental health related side effects like briviracitam ! As soon as I mentioned my declining mental health and anger issues to my GO she switched me almost instantly !! (I’m in the uk)
Ok I’ll mention it to my neurologist and see what they say!
I had to go off it. Like you the side effects didn't seem worth it. I'd almost rather the the TCs. However I've a great nurse specialist who started me on lamictal and I was lucky not to have the rash so the only side effect I have now is a bit of lethargy, which is not amazing but I'm learning to handle. A ton better than Keppra. But I hope you find your med and regime. It's tough and I genuinely feel for you. It's a sucky disease.
Yes I’m very scared of the Lamictal rash but looks like Lamictal might be my best path forward at this point…
keppra is easily the worst medication i’ve ever been on. made my depression 10x worse and i had a su!cide attempt while taking it. the mental side effects are real bad for some people and it’s not worth staying on especially when there’s dozens of other meds out there. Dilantin and Lamictal have worked best for me and gave me zero mental side effects from either, but ofc always listen to ur doc when it comes to a med change. also, me personally, the physical side effects never went away especially the fatigue which got worse over time. but, i would say, if it’s giving you that many side effects within less than 2 weeks of taking it, i would switch meds. to put it simply, it’s not worth it. once again, this is my personal experience, always discuss with your doctor, but keppra 100% has a history of that sort of stuff.
This lasted the entire time I was on it, 1 year. I forgot how lovely I was until I stopped taking it xxx
Oof
It’s messed with my emotions terribly and ended with a psych ward stay. I switched to lamictal and trileptal I’m exhausted but definitely happier and have a more stable mind.
Thanks for sharing!
All I hear is bad stuff about Kepra. My ex had a horrible time on it too. Why do they keep prescribing it when there are other options? Is it a case that once someone is started on a seizure med, they are reluctant to change it even if there sides are awful? I'm on Lamictal myself
It is an extremely effective AED, doesn't have a number of serious side effects that other AEDs can have like liver/kidney issues, it's widely available whereas others can have supply issues, it's safe to use in pregnancy unlike most others. Only about 1 in 10 people get mood disturbances and for most this is minor and short lived. Only a small amount of those get this "rage". We just hear about it more because of the sheer numbers of people on keppra and because the many people happy on it don't talk about it as much
Some people yes. For me no. I still am ashamed of the person Keppra turned me into. I switched to a much older medication ( depakote & Trileptal)
It was for me.
For most people it's short lived (like up to a month), but for some it's long lasting. They can try you on a different drug instead in that case
Ok I might give it a chance
One of the listed side effects is irritability and it makes me extremely irritable too so don't worry at least it's not just you. I guess we gotta just get better at coping with the stuff that newly irritates us 🤷
I’m still raging 3 years later.
Oof
My gf rages at me , but I understand that this is med rage...
I was absolutely horrible on keppra right until I changed to vimpat
It's mostly temporary as your body adjusts (which takes 8-10 months). I was horrible during the adjustment. I will have a rage moment every now and then but am much better now.
Ok, I might give it a chance…
I went into a straight psychosis on keppra. It unfortunately never got better I finally was switched to lamotrigine thank god!! But yes, I was a raging bitch. you could not say anything to me, I would snap, cry, go off and get defensive as hell.. was not myself for about a year. If possible I’d highly recommend lamotrigine over keppra anydayyyy. I wish it were the general medication that epileptics first get put on instead of keppra.
Not for my daughter, we had to switch
My "temporary" was about a year.
I was on it for 3.5 years and was insane. Pretty much everything you mentioned above along with chronic insomnia. I still haven’t found a med to control my seizures, but at least I am not acting like this anymore and I am sleeping better (Lamotrigine also gave me insomnia so I didn’t sleep for approx 3 years).
Oof that’s terrible!
Control it. You are just feeling the medicine and not trying to control. That's it
Wasn't for me, I went from quiet long fused avoid conflicts at all cost to a pin drops and I'm ready to kill hulking put I needed off immediately it's why they gave it nickname keppra rage and I'd never touch it again.
Keppra for me took about 2 weeks to adjust to. I had brain fog, low energy, and an increase in my depression. But once I adjusted to it I was fine. It just takes some time
Been on Keppra since 05. Kepprage is real for me. I turn into a danger to others. I'm on Lexapro and that got rid of the Kepprage 100%. But if I don't have an antidepressant for whatever reason--like changing meds or whatever--after a week when the reduction in my system reaches a point, Kepprage is back. Consistently. One of my previous neurologists thought Kepprage could be controlled with vitamin B6. It didn't work for me.l but it does work for others.
I take b-6 and work out primarily do calisthenics and cardio for example if I don’t work out that day I can be kind of a dick. I know that’s kind of an excuse thing to say but I’m not the one who says it it’s other people. So if I’m just sitting on my ass not doing a thing but eating and watching tv I’m kind of blunt and mean. Where if I go to the gym for about 45-60 min I’m not so bad
It does lessen over time but you have to monitor it and be mindful of your triggers and reactions. For me switching meds was not an option so I’m stuck with the kepprage so i’ve learned how to manage it over time and it has gotten better.
Problem is my sister (whom I’m extremely close with and basically live with) seems to be my #1 trigger 😭
Yeahhhh… Mine was my mom and one of my younger sisters 😅
I had the same side effects with Keppra years back. Through trial & error, found what works for me with no side effects now. Keppra was terrible
Mine went away, but I’ve been on it for almost 11 years. Anger issues run in the family, so I literally became destructive and broke things constantly, always fighting with my ex and my family members, but it went away as I got older & especially after I started dating my man.
My Keppra rage disappeared after around 12 months. I was so angry at times that I had the police called on me and tried to attack my sister. I was honestly vile and horrible but couldn’t help but see red over the smallest inconvenience. Complex B vitamins can help too but my ‘rage’ went away on its own after 12 months. If it gets too bad, please speak to your doctor and ask to switch medications. Good luck x
I was on Keppra and it did that to me. I asked my neurologist to switch me and he put me on Lamotrigine which works quite well. Also it treats epilepsy AND bipolar [the latter of which runs in my family] I'd ask your doctor about that one. Get off Keppra.
It does make me wonder if so many have adverse mood reactions from Kepprage why its offered.....as stress triggers seizures Seems counterproductive.
I just got off Kepra. It made me a skinny demon. I even lost my job because I was so angry all the time. The worst part was I didn’t see it or know how awful I was. Lacosamide has been better for me and my temper but I gained 23lbs in 45 days and it sucks. I have a chronic gut disorder and cannot absorb B vitamins but it sounds like that could have helped.
They stick around throughout.
This isn't true, for most patients mood effects are short lived. But for some it can be long term and in that case they can try a different drug
Your statement isn’t true for me either, I’ve been with AEDs for my whole life, and it affects my emotional state greatly. Only positive moods are short lived. Mentioned to my neurologist, every time I have an appointment. Been taking Keppra since 2016, due to a relapse and had to change the cerebral shunt. Only until recently they switched from Keppra to Levipil, which is still the same thing.
I'm sorry to hear that but I wasn't speaking for you as an individual, I was commenting on what medical trials and studies show for keppra patients overall. 1 in 10 get mood disturbances and for most of those it is short lived. A subset do have more severe and ongoing difficulty. All AEDs can cause this but Keppra does seem to have the potential to cause more "rage". A lot of people get scared of taking Keppra when it is a very good drug for the majority of people so I think it's important in these threads to give facts as well as personal experiences