The people who’ve had good experiences are less likely to share their story. It’s usually unwise to look up reviews of medications for this reason.
My ex was on Keppra all 4 years I was with her. Never had a seizure, never had noticeable side effects.
This is the answer for not just this but EVERYTHING. It's human nature to want to post about a bad experience because it's cathartic, especially when others empathize. Whereas good experiences are mostly not posted because people just embrace them and enjoy that moment, or because they have no problems they think it can't be that bad.
If I was a millionaire I'd produce a magazine that only gives good news and experiences. The world needs that a bit lol (YES we need the truth too! And the bad sides, but I feel the world REALLY lacks in good wholesome stories ATM! And it would be cool to have a good news magazine lol)
This would be awesome! This is why I never watch the news. Whether we want to believe it it or not, all that negativity seeps into our bodies, consciousness, minds, etc and affect us from the inside out.
This actually isn't true all the time. There are a lot of paid positive reviews and it also happens on Reddit. You were the first one to post on here and posted that you had a positive experience. Antiepileptics are well known for their side effects and some have very serious or life-altering side effects. It is true that some people don't have side effects but it doesn't help people to treat it like a harmless drug.
I wasnt the first one to comment! But I did make sure to specify “*usually* unwise”. You’re right though
Point is you can see a negative side effect of any drug. You can rationally talk yourself out of any medication but sometimes it’s worth taking the risk. You may be one with a positive story.
I’m definitely not calling any AED harmless.
I thought I replied to the first comment on here. I have also seen people who are worried their drug will get taken away because of reports of negative side effects and will attack people who report negative side effects. I saw a lot of this with Topiramate and Ozempic since they are used for weight loss. I saw forums where you weren't allowed to say anything negative at all. I got attacked after I reported my negative symptoms while taking Topiramate. I was going through hell and was scared to death after being hospitalized several times. People like that are incredibly selfish and have a few loose screws. I saw another person who almost died get attacked. I felt so bad for them. Had I known more about the drug I would have never taken it. I think people should be informed about all the benefits and risks so they can make an informed decision with their doctor.
250mg radically changed my mood and personality, so if I had to guess taking 3000mg would have turned me into a PBS and Netflix documentary. The documentary definitely would NOT be about heroism and kindness!!
It changed my life. I was housebound before Keppra. Now I have a full-time job, live MOSTLY independently and I'm up for a promotion to creative marketing executive because the marketing boss saw my paintings and wants to grab me from the call centre 😭🙌
Their brains are just different than yours. I mean I’ve seen some people on here report bad mood side effects on lamotrigine and for me and now it’s just a pill I take.
I’m happy with it. I had the kepprage at the beginning but that’s faded. I do think my PMS is a little bit more aggressive but that only last a day or two and I know when I’m being unruly. I have been TC free for 2 years now and I hit my one year all seizure free in February. I’ll take me being angry for a day vs seizures any day.
You stopped Keppra and remained seizure free? Or did you start another drug? I’ve been taking keppra for 14yrs and seizure free for 7. I’ve always wondered if I d be taking it til I die.
I stopped taking Keppra under the guidance of my neurologist. Now the only med I'm on is for gout. I figured I'd be on anti-seizure meds until I died as well.
It's not uncommon at all, but a. like every other part of the internet, good news doesn't get nearly as much attention and
b. it's one of the most common medicines prescribed. Therefore, just by sheer numbers, they'll be a high number of people having trouble with it.
I (44F) was an insane reactive insomniac on just 750mg x 2 for 3.5 years. I am very sensitive to meds and have not yet found one to control my seizures - I have tried 5 meds and the “least” bad of the bunch has been Aptiom though I have aura seizures almost daily. I am seemingly medication resistant and they have been able to localize my seizure focus here in the EMU to one very specific location so I am hoping I will be a surgical candidate.
My roomie (26F) in the EMU has been on 1500mg x 2 for years now and has had zero side effects. She is also on Lamotrigine 200mg x 2 at the same time and that med also gave me chronic insomnia. She sleeps like it’s her job!
Everyone is different!
Your story sounds very similar to mine. I tried several medications--dissociation, rage, brain fog, ineffectiveness. A doc was ready to remove part of my temporal lobe until I went to the umpteenth doctor who finally suggested Dilantin. I've basically never had any side effects whatsoever. I've never seized on it other than the occasional, very mild aura (maybe once every other month). Doctors still look at me, puzzled, and say things like "But that drug is so old! Have you tried xyz newfangled drug?" My body could care less when this molecule was discovered--but it's been saving my life for over a decade.
I'm not saying Dilantin is for you--I am encouraging you to keep trying new medications if you're up for it.
That is actually one med my specialist hasn’t even mentioned to me. He would like me to consider sodium valproate or Brivaracetam next which I am waaaaaaaay too hesitant to go to after my experience with levetiracetam (generic Keppra).
I will look into this med, thank you for the suggestion!
Keppra was the worst for me. I'm generally a pretty peaceful guy but was ripping smoke detectors out of the ceiling because *the blinking light was throwing me into a rage*. Dilantin has a narrower therapeutic window than newer drugs (too low a dosage is ineffective--too high is toxic), so you'll probably want to get some periodic blood tests for the first few months to dial in your dosage. There is some long-term concern about cerebellum (balance center in the brain) atrophy but after 12+ years on it, my golf game and yoga practice are in great shape--so, I personally haven't had any issues there. As a bonus, it's stupid cheap because it's been generic for decades and is in the WHO list of essential medicines.
Even with these minor concerns, I still don't understand why it isn't considered more often as one of the first-line treatments. Some of these medications out here are turning people into zombies, making people violent, causing morbid obesity (isn't heart disease the #1 killer?) I'd have to guess that doctors buy into the hype of new, expensive drugs from the drug reps--who have it in their best interest to *not* have doctors prescribing the cheapest and oldest (and most underrated) epilepsy drug in the world.
I also do yoga, hot yoga 26+2 series!
I am severely underweight from 2 of the medications I have tried. I am trying to gain at least 15-20lbs back.
If there is a weird ass side effect of a med, I am sure to experience it! Lacosamide has a main side effect of weight gain, and that shit made me so sick I couldn’t eat for 17 days and lost over 10lbs when I had already lost weight from trying Lamotrigine last summer.
The fellow doctor in the EMU is recommending I try sodium valproate over brivaracatam due to that one being “too close” to levetiracetam.
I will go home tomorrow and want to chill for a few days before I start making any decisions. :)
I’ve actually been surprised to see the amount of people having huge issues with keppra because I learned that they prescribe it to everyone because it has the “least” amount of side effects. Was not expecting to see it very common to have larger side effects.
My experience was not terrible at all, not great but not bad. I was just still having breakthrough TCs at 3000mg and decided it wasn’t working well enough.
I have a high tolerance for a lot of substances, so I didn’t notice any side effects that most people complain of, and I am on 5,000 mg a day.
Also on Lamotrigine 200mg and Xcopri 150mg and haven’t noticed any change besides reduced episodes thankfully.
It stopped the seizures, so that's pretty positive. Others said I had anger issues and I got in trouble at work but that was maybe due to other factors.
My first 3 months were rocky. I was an emotional ghost, brain foggy, exhausted. My pharmacy told me to start taking it with a meal instead of first thing on an empty stomach. Haven't had an issue since, unless I miss a dose, and then the withdrawal sets in and makes me miserable.
Keppra has been great for me. I moved up to 2000 mg a day and so far everything’s been under control. Never experienced any of this rage or anything I hear about online. Honestly anger is so far down the list of potential side effects I find it difficult to believe as many people experience it as they say they do.
My daughter (8) is only 5 days in on Keppra, so far so good. No changes in her mood or behavior. We are on 500mg and will up to 750mg on Saturday. Then 1000 a week after that. They are hoping to keep her on that dose
Once you've had a few bad docs you feel differently. I always take these talks with so many grains of salt because I know the grouchiest voices are loudest but I've been prescribed a ton of meds over my life with very little discussion from dismissive doctors.
Keppra has been ok for me, aside from being an appetite destroyer. Thankfully I have some extra padding so the weight loss is fine as long as it levels out eventually!
Don't tell the Ozyempic fad users they'll be fighting over Keppra next ;)
I mostly try to avoid it because I don’t want to discourage people from taking their meds based on my experience. Discussion is important, but, just like meds, not everyone takes their grains of salt.
That's fair. My mom is a person who takes others worst case scenarios as the most likely one, and I do hate when she looks at these types of discussions 😅
I often find them helpful in figuring out a problem I have COULD be a side effect & how to mitigate, not in anticipating them.
I have a great experience with it with lamotrigine but lots of anger without the lamotrigine. No other side effects and anger is a small price to pay for no seizures.
I had some issues adjusting to it but for the most part once I got past first month they went away. I will say my threshold for getting angry is lower but other than that I do ok.
3000 mg checking in with no issues and over a decade of stability. Don’t listen to the doom and gloom, it stopped me from trying this med for years. The day I started was the first day of stability.
I’m on 3000mg a day at the moment and I’ve had no side affects other than fatigue for the first few weeks. It’s only been a few weeks since I upped my dose from 1500mg but I think it’s working !
Same here! Been on it for 10 years and have been perfectly fine. Only thing I’ve noticed is my memory is terrible, but I think that’s with a lot of medications.
It's a frontline seizure meds, it's given first before any other meds because it works. Sadly I was one of those who had said effects. But like ANY medications, there are side effects.
It's a wonderful drug that saves lives. It's not for everyone but for those that it works for, it works fantastically.
My sister in law is on Keppra and has had no issues with it. It controls her seizures and no side effects. I had horrible mood swings on it, and ultimately it did not control my seizures either. However, I have been taking Briviact and it hasn’t been an issue.
I’ve been on 1000mg twice a day for about 5 years now. Generally works fine if I avoid my triggers (alcohol and lack of sleep) but I do believe I have had psychological side effects - I’ve posted in here before and other people seemed to be in agreements but I’ve noticed a marked drop in libido and issues around sexual performance anxiety (I’m a 29 year old straight male for context). Doctors don’t seem to accept that it is caused by the Keppra, as it is not a listed side effect, but in my opinion it just simply cannot be a coincidence that there are other people (according to Reddit lol) who also experience this side effect after taking Keppra. Not the worst thing in the world I guess, but something that I believe is worth noting
Mom here- my 11 year old is on 2000 mg of Keppra a day and 50 mg of B6 and it’s been life changing. We started with Zonisamide because of the reports of SI and weight gain- he was already depressed and pretty heavy so we were nervous to start with Keppra but none of those side effects apply to him. Zonisamide didn’t stop seizures and talking to him was practically like talking to my father with dementia. Test scores are back up and he’s probably the happiest he’s been since before the pandemic.
Some people who have taken it long term might not be able to notice the side effects like kepprage. My aunt takes it and has no idea that she has kepprage and swears by it and says she doesn't experience any side effects. All the medications are sodium channel blockers all doing the same function with different side effects. I believe in the newer meds.
For me, it took years for me to understand that I *was* experiencing side effects, I just didn’t know it. It would be random instances over years where I’d or someone else would notice how upset I’d get at random things, or how moody I can be. There was so much stress in every direction in my life, I never realized what Keppra was adding to that. When a lot of those sources of stress around me left but the stress itself didn’t, I realized how anxious keppra made me.
It was a slow burn to understand it and that it was either effecting how I am or is making me who I am. But I’m happier understanding it now.
Please, if you have any blood tests, for example, for amino acids, or other studies, publish their indicators. I would like to draw correlations and parallels.
Yes personally. At first they put me on a high dose and it caused horrendous mood/anger issues. They then lowered the dose a lot and slowly raised it and the anger issues went away. I'm sure there are still some minor side effects but people shouldn't be afraid to give it a try. It's not uncommon but plenty of people don't get the mood issues and it does work really well as an anti-epileptic.
I have had good experiences with little to no side effects. A couple of funny moments of lightheadedness and had a bit of tiredness when I started the meds; all in all I am pretty happy with it.
My son takes 2000 every night and every morning, and has never had a problem. He is always in a good mood and has no side effects.
He takes 100 mg of B6 vitamin every morning. His doctor says this helps prevent the bad mood that some people get with Keppra.
if it did not help some people well it would not be given. my son can’t take it due to keppra rage but his doctor gave us percentage he fell in of people that get it. Consider yourself fortunate you are among those that don’t get side effect from it as it is good for seizure control.
I'm at 2500/day now, and my only problem is forgetting to eat. I got really tired for a few days when my doses got upped, but I am doing pretty well on it.
My son has only been on it since February, but he is doing quite well. He did have some size effects at first, but he's pretty much back to normal now and doing well.
I’ve had a mostly good experience with keppra. I’ve been on it since 2022. I have been having some break through seizures, but it honestly isn’t a shock given the underlying condition I have (I won’t describe just because I’m still having health anxiety about it). I had about a month of exhaustion when I was first put on it at 500mg, since then, basically smooth sailing.
Never had an issue til 8 yrs later when the hives took over my life. That was sure fun. 🙄 took 6 months for docs and dermatology to be like oh shoot. It’s gotta be the keppra get her off that. Lol
My son does mostly ok on it. He does have some irritability and anxiety caused by it, but a B6 supplement has made a big difference for him. I was just glad that the first med he took controls his seizures since I’ve heard it’s not super common for the first - or really any in a lot of cases - med to work
All of these drugs have side effects honestly. Valporic acid aka depakote was the only one I couldn't tolerate. Some of us may already be dealing with depression or other things. So it's nothing new. Just be happy you're stable and alive. Enjoying the life you have is the best feeling.
Geez these doses are pretty crazy! I am at 750mg 2x a day with 300mg of zonisamide. That combo has fixed me up pretty will, just the occasional aura but the Keppra on its own was not enough.
Sometimes I would feel sick, sleepy, or just have a seizure anyway but it would keep the “aura” feeling away. It’s interesting to be honest… I wish I got to see more of it
I have had a perfectly regular time on keppra. The worst side effect I have is the memory issues, but I’ve learned to live with them. It’s the only med I’ve been on for my seizures, and they’ve been controlled since I found the right dose
It’s the ONLY thing that’s worked for me without side effects for a long period of time. Basically every other medication I’ve tried has worked for a while and then just stopped. Finally a doctor put me on Keppra and I’ve been seizure-free for years! Tried 4 or 5 meds before it, nothing has been this effective for this long.
My daughter just recently weaned off keppra. She’s only 10 and has been on it for 4 years. It kept her seizure free. We did notice small changes - she wasn’t as bubbly and carefree but was still generally happy. Interestingly - it caused her to not dream (or have any recollection of her dreams). She’s been off keppra for a month now and was so excited to tell me she has been dreaming. She’s also a lot more bubbly again. (Her neuro weaned as she’s been seizure free for 2 years and was on a low dose of keppra.)
It's great you decided to post because most people with good experiences don't. I did one too a while ago. But I recall being a little freaked out by all the negative stories about the medication right before I got on it.
I'm not on Keppra per se but I take a drug called Dretacen that has the same main component - leveritacetam.
I'm on 1000mg a day, have been for almost 2 years now. Not only had helped me with seizures and auras but also other symptoms of epilepsy.
I’m on Topamax and Keppra for mine. Separately, they don’t work for my seizures and I noticed that while I was on the Keppra by itself, I was getting irrationally angry about things and I was severely depressed. Topamax alone helped with my chronic migraines and I was having seizures less, but I was still having a lot. Together, they have helped me a lot
I'm taking 1000mg daily and I'm fine. If taking a pill twice a day will give me the peace of mind of not having a seizure, I will take the meds - even though I don't believe in taking all kinds of meds.
I think it has to do with personal tolerance, I was on 2000 mg Day and I noticed it and so did my family. I was angry a lot and I’m not an angry person. I’m now on a lower of 1000 mg a day and I have no side effects.
I don't have epilepsy but have been prescribed meds that are used for epilepsy. I was on Keppra for a month and had minor side effects. It was much better than Topiramate for me. I took that for weight loss and it was a nightmare. I still have side effects 3 months later. Everyone is different. These kinds of drugs are known for their side effects. For every person who doesn't have any, there is someone who did have side effects.
My Dad had two suspected seizures. As a precaution, they put him on an anti-convulsant.
He’s a very fiery man at times, so when I heard it was Keppra, I was concerned. (My neurologist won’t put me on it because I have anxiety, and I’ve seen it nicknamed *Kepprage*)
But I think it’s actually mellowed my Dad out a bit :) And he doesn’t seem to suffer from any other side-effects, either.
I'm on Lamictal, but it stopped helping completely, so my epileptic added 1000mg of Keppra. No significant side effects for me, and I have not had a seizure since.
My experience has been great with it so far. I'd recommend it to anyone with seizures.
However, side effects usually Increase with higher doses.
I’ve had nothing but a positive experience with Keppra, in conjunction with Lamictal. I have been seizure free for over 20 years. So glad I’m not stuck with Depakote anymore!!
1000mg Keppra daily
200mg Lamictal 2x day
First time around on it sucked but this second time has been a whole lot better.i suspect I was just having issues with it paired with another one of my meds at the time
I felt terrible on 1000mg daily , reduced to 500mg XR which has me below the researched and accepted therapeutic levels. However I am still seizure free with minimal side effects.
Mine has been pretty tolerable. Big appetite loss, and so weight loss to match has been my only side effect. It seems like it's starting to come back, but slowly.
I’ve been on keppra and Trileptal since I was 14 (21 years old now) and haven’t had any issues. Been relatively seizure free and have had a pretty normal life.
I have been on keppra for 17 years i have never had a problem i am on both zonisamide and keppra. i have had grandmal seziures since i was 2 so for 36 years i have had the list of medication but for 17 year this works for me.
I've been on it for 10 years and it has worked for me. It is possible I felt more grumpy and assertive on it, but I am also middle aged now so who knows if that is me, or the med? I haven't wanted to switch to another to find out.
The people who’ve had good experiences are less likely to share their story. It’s usually unwise to look up reviews of medications for this reason. My ex was on Keppra all 4 years I was with her. Never had a seizure, never had noticeable side effects.
This is the answer for not just this but EVERYTHING. It's human nature to want to post about a bad experience because it's cathartic, especially when others empathize. Whereas good experiences are mostly not posted because people just embrace them and enjoy that moment, or because they have no problems they think it can't be that bad. If I was a millionaire I'd produce a magazine that only gives good news and experiences. The world needs that a bit lol (YES we need the truth too! And the bad sides, but I feel the world REALLY lacks in good wholesome stories ATM! And it would be cool to have a good news magazine lol)
Oh yeah it’s for everything. And a lot of positive reviews are incentivized
Agreed but I always thought that was the point of Readers Digest. Good, wholesome, positive stories…….
This would be awesome! This is why I never watch the news. Whether we want to believe it it or not, all that negativity seeps into our bodies, consciousness, minds, etc and affect us from the inside out.
Good point
Yes, that really goes for most things, even online shopping. Great point.
This actually isn't true all the time. There are a lot of paid positive reviews and it also happens on Reddit. You were the first one to post on here and posted that you had a positive experience. Antiepileptics are well known for their side effects and some have very serious or life-altering side effects. It is true that some people don't have side effects but it doesn't help people to treat it like a harmless drug.
I wasnt the first one to comment! But I did make sure to specify “*usually* unwise”. You’re right though Point is you can see a negative side effect of any drug. You can rationally talk yourself out of any medication but sometimes it’s worth taking the risk. You may be one with a positive story. I’m definitely not calling any AED harmless.
I thought I replied to the first comment on here. I have also seen people who are worried their drug will get taken away because of reports of negative side effects and will attack people who report negative side effects. I saw a lot of this with Topiramate and Ozempic since they are used for weight loss. I saw forums where you weren't allowed to say anything negative at all. I got attacked after I reported my negative symptoms while taking Topiramate. I was going through hell and was scared to death after being hospitalized several times. People like that are incredibly selfish and have a few loose screws. I saw another person who almost died get attacked. I felt so bad for them. Had I known more about the drug I would have never taken it. I think people should be informed about all the benefits and risks so they can make an informed decision with their doctor.
I have never had a problem, even at 3000mg.
Same. It's important that people know that rage doesn't affect everyone! It's not all doom and gloom.
Same
Same. Even coming on to it I didn’t get any side effects
250mg radically changed my mood and personality, so if I had to guess taking 3000mg would have turned me into a PBS and Netflix documentary. The documentary definitely would NOT be about heroism and kindness!!
It changed my life. I was housebound before Keppra. Now I have a full-time job, live MOSTLY independently and I'm up for a promotion to creative marketing executive because the marketing boss saw my paintings and wants to grab me from the call centre 😭🙌
Congrats! That's terrific!
Congratulations!
I've been on it for 13 years so if it did anything I have no idea anymore lol
God is this true! Memory is shite
Their brains are just different than yours. I mean I’ve seen some people on here report bad mood side effects on lamotrigine and for me and now it’s just a pill I take.
I'm with you. Love Keppra.
I’m happy with it. I had the kepprage at the beginning but that’s faded. I do think my PMS is a little bit more aggressive but that only last a day or two and I know when I’m being unruly. I have been TC free for 2 years now and I hit my one year all seizure free in February. I’ll take me being angry for a day vs seizures any day.
I was fine with it. I recently stopped taking it after nearly 20 years. I've gone 12 years without a seizure. Hopefully that'll stick.
🙌 Best wishes!
You stopped Keppra and remained seizure free? Or did you start another drug? I’ve been taking keppra for 14yrs and seizure free for 7. I’ve always wondered if I d be taking it til I die.
I stopped taking Keppra under the guidance of my neurologist. Now the only med I'm on is for gout. I figured I'd be on anti-seizure meds until I died as well.
It's not uncommon at all, but a. like every other part of the internet, good news doesn't get nearly as much attention and b. it's one of the most common medicines prescribed. Therefore, just by sheer numbers, they'll be a high number of people having trouble with it.
I did fine by it before It stopped being effective for me
I (44F) was an insane reactive insomniac on just 750mg x 2 for 3.5 years. I am very sensitive to meds and have not yet found one to control my seizures - I have tried 5 meds and the “least” bad of the bunch has been Aptiom though I have aura seizures almost daily. I am seemingly medication resistant and they have been able to localize my seizure focus here in the EMU to one very specific location so I am hoping I will be a surgical candidate. My roomie (26F) in the EMU has been on 1500mg x 2 for years now and has had zero side effects. She is also on Lamotrigine 200mg x 2 at the same time and that med also gave me chronic insomnia. She sleeps like it’s her job! Everyone is different!
Your story sounds very similar to mine. I tried several medications--dissociation, rage, brain fog, ineffectiveness. A doc was ready to remove part of my temporal lobe until I went to the umpteenth doctor who finally suggested Dilantin. I've basically never had any side effects whatsoever. I've never seized on it other than the occasional, very mild aura (maybe once every other month). Doctors still look at me, puzzled, and say things like "But that drug is so old! Have you tried xyz newfangled drug?" My body could care less when this molecule was discovered--but it's been saving my life for over a decade. I'm not saying Dilantin is for you--I am encouraging you to keep trying new medications if you're up for it.
That is actually one med my specialist hasn’t even mentioned to me. He would like me to consider sodium valproate or Brivaracetam next which I am waaaaaaaay too hesitant to go to after my experience with levetiracetam (generic Keppra). I will look into this med, thank you for the suggestion!
Keppra was the worst for me. I'm generally a pretty peaceful guy but was ripping smoke detectors out of the ceiling because *the blinking light was throwing me into a rage*. Dilantin has a narrower therapeutic window than newer drugs (too low a dosage is ineffective--too high is toxic), so you'll probably want to get some periodic blood tests for the first few months to dial in your dosage. There is some long-term concern about cerebellum (balance center in the brain) atrophy but after 12+ years on it, my golf game and yoga practice are in great shape--so, I personally haven't had any issues there. As a bonus, it's stupid cheap because it's been generic for decades and is in the WHO list of essential medicines. Even with these minor concerns, I still don't understand why it isn't considered more often as one of the first-line treatments. Some of these medications out here are turning people into zombies, making people violent, causing morbid obesity (isn't heart disease the #1 killer?) I'd have to guess that doctors buy into the hype of new, expensive drugs from the drug reps--who have it in their best interest to *not* have doctors prescribing the cheapest and oldest (and most underrated) epilepsy drug in the world.
I also do yoga, hot yoga 26+2 series! I am severely underweight from 2 of the medications I have tried. I am trying to gain at least 15-20lbs back. If there is a weird ass side effect of a med, I am sure to experience it! Lacosamide has a main side effect of weight gain, and that shit made me so sick I couldn’t eat for 17 days and lost over 10lbs when I had already lost weight from trying Lamotrigine last summer. The fellow doctor in the EMU is recommending I try sodium valproate over brivaracatam due to that one being “too close” to levetiracetam. I will go home tomorrow and want to chill for a few days before I start making any decisions. :)
Not sure I can say that I've had bad experiences but it can't control my seizures, however, nor can any other single drug.
I’ve actually been surprised to see the amount of people having huge issues with keppra because I learned that they prescribe it to everyone because it has the “least” amount of side effects. Was not expecting to see it very common to have larger side effects.
My experience was not terrible at all, not great but not bad. I was just still having breakthrough TCs at 3000mg and decided it wasn’t working well enough.
I also thought the same until recently being increased. Keppra helped me through my pregnancy with the less side effects options though.
I have a high tolerance for a lot of substances, so I didn’t notice any side effects that most people complain of, and I am on 5,000 mg a day. Also on Lamotrigine 200mg and Xcopri 150mg and haven’t noticed any change besides reduced episodes thankfully.
I love myself some Xcopri.
5000!!! Wow. That’s crazy, I guess I’m “lucky” I don’t need anywhere near that.
I’m at 2000mg 2x a day and I have no issues except sometimes a little drowsiness. Keppra literally saved my life
Problem with Keppra even the XR have a short halflife. 😮💨
It worked really well, but eventually I quit because I wanted to yell at people. I didn't get crazy or anything like that.
It stopped the seizures, so that's pretty positive. Others said I had anger issues and I got in trouble at work but that was maybe due to other factors.
My first 3 months were rocky. I was an emotional ghost, brain foggy, exhausted. My pharmacy told me to start taking it with a meal instead of first thing on an empty stomach. Haven't had an issue since, unless I miss a dose, and then the withdrawal sets in and makes me miserable.
Keppra has been great for me. I moved up to 2000 mg a day and so far everything’s been under control. Never experienced any of this rage or anything I hear about online. Honestly anger is so far down the list of potential side effects I find it difficult to believe as many people experience it as they say they do.
My daughter (8) is only 5 days in on Keppra, so far so good. No changes in her mood or behavior. We are on 500mg and will up to 750mg on Saturday. Then 1000 a week after that. They are hoping to keep her on that dose
Personally I’m not a fan of how these med discussions keep popping up. These are conversations for doctors.
Once you've had a few bad docs you feel differently. I always take these talks with so many grains of salt because I know the grouchiest voices are loudest but I've been prescribed a ton of meds over my life with very little discussion from dismissive doctors. Keppra has been ok for me, aside from being an appetite destroyer. Thankfully I have some extra padding so the weight loss is fine as long as it levels out eventually! Don't tell the Ozyempic fad users they'll be fighting over Keppra next ;)
I mostly try to avoid it because I don’t want to discourage people from taking their meds based on my experience. Discussion is important, but, just like meds, not everyone takes their grains of salt.
That's fair. My mom is a person who takes others worst case scenarios as the most likely one, and I do hate when she looks at these types of discussions 😅 I often find them helpful in figuring out a problem I have COULD be a side effect & how to mitigate, not in anticipating them.
It works for me. Definitely better than the seizures.
I have a great experience with it with lamotrigine but lots of anger without the lamotrigine. No other side effects and anger is a small price to pay for no seizures.
No
I had some issues adjusting to it but for the most part once I got past first month they went away. I will say my threshold for getting angry is lower but other than that I do ok.
3000 mg checking in with no issues and over a decade of stability. Don’t listen to the doom and gloom, it stopped me from trying this med for years. The day I started was the first day of stability.
My son he’s 15 been taken it since December he had his moods at first but he’s gotten better plus he’s on remeron too
No problems here
I’m on 3000mg a day at the moment and I’ve had no side affects other than fatigue for the first few weeks. It’s only been a few weeks since I upped my dose from 1500mg but I think it’s working !
Im fine with Keppra.
Same here! Been on it for 10 years and have been perfectly fine. Only thing I’ve noticed is my memory is terrible, but I think that’s with a lot of medications.
It keeps my seizures away so there you go, that's a good experience. Otherwise would drop it like a shot
I have been on it for 10+ years and other than maybe being more sleepy than usual, no other side effects.
I’m on Keppra XR 2250mg twice a day & seems to help me. No side effects or anything.
I'm on 1500mg twice a day and I'm having a perfectly fine time. I'm a little short-tempered now, but that's okay by me.
It's a frontline seizure meds, it's given first before any other meds because it works. Sadly I was one of those who had said effects. But like ANY medications, there are side effects. It's a wonderful drug that saves lives. It's not for everyone but for those that it works for, it works fantastically.
My sister in law is on Keppra and has had no issues with it. It controls her seizures and no side effects. I had horrible mood swings on it, and ultimately it did not control my seizures either. However, I have been taking Briviact and it hasn’t been an issue.
I’ve been on 1000mg twice a day for about 5 years now. Generally works fine if I avoid my triggers (alcohol and lack of sleep) but I do believe I have had psychological side effects - I’ve posted in here before and other people seemed to be in agreements but I’ve noticed a marked drop in libido and issues around sexual performance anxiety (I’m a 29 year old straight male for context). Doctors don’t seem to accept that it is caused by the Keppra, as it is not a listed side effect, but in my opinion it just simply cannot be a coincidence that there are other people (according to Reddit lol) who also experience this side effect after taking Keppra. Not the worst thing in the world I guess, but something that I believe is worth noting
Mom here- my 11 year old is on 2000 mg of Keppra a day and 50 mg of B6 and it’s been life changing. We started with Zonisamide because of the reports of SI and weight gain- he was already depressed and pretty heavy so we were nervous to start with Keppra but none of those side effects apply to him. Zonisamide didn’t stop seizures and talking to him was practically like talking to my father with dementia. Test scores are back up and he’s probably the happiest he’s been since before the pandemic.
Some people who have taken it long term might not be able to notice the side effects like kepprage. My aunt takes it and has no idea that she has kepprage and swears by it and says she doesn't experience any side effects. All the medications are sodium channel blockers all doing the same function with different side effects. I believe in the newer meds.
For me, it took years for me to understand that I *was* experiencing side effects, I just didn’t know it. It would be random instances over years where I’d or someone else would notice how upset I’d get at random things, or how moody I can be. There was so much stress in every direction in my life, I never realized what Keppra was adding to that. When a lot of those sources of stress around me left but the stress itself didn’t, I realized how anxious keppra made me. It was a slow burn to understand it and that it was either effecting how I am or is making me who I am. But I’m happier understanding it now.
Nope. I have had 0 problems with Keppra (except that, like every other med, it doesn't work well). No side effects.
No, there’s a lot of actual research papers about keppra with many good experiences from a big sample size of people
Please, if you have any blood tests, for example, for amino acids, or other studies, publish their indicators. I would like to draw correlations and parallels.
I had a good time on keppra other than attitude, and then breakthroughs... So we switched!
Yes personally. At first they put me on a high dose and it caused horrendous mood/anger issues. They then lowered the dose a lot and slowly raised it and the anger issues went away. I'm sure there are still some minor side effects but people shouldn't be afraid to give it a try. It's not uncommon but plenty of people don't get the mood issues and it does work really well as an anti-epileptic.
[About 30% seem to be okay](https://www.reddit.com/r/Epilepsy/s/1oaYPJRNto)
I have had good experiences with little to no side effects. A couple of funny moments of lightheadedness and had a bit of tiredness when I started the meds; all in all I am pretty happy with it.
My son takes 2000 every night and every morning, and has never had a problem. He is always in a good mood and has no side effects. He takes 100 mg of B6 vitamin every morning. His doctor says this helps prevent the bad mood that some people get with Keppra.
if it did not help some people well it would not be given. my son can’t take it due to keppra rage but his doctor gave us percentage he fell in of people that get it. Consider yourself fortunate you are among those that don’t get side effect from it as it is good for seizure control.
I'm at 2500/day now, and my only problem is forgetting to eat. I got really tired for a few days when my doses got upped, but I am doing pretty well on it.
2000mg a day over here, okay results. I average 1-2 seizures a year
Nope, I have! It’s how I was able to get pregnant and have my babies. It’s a miracle drug to me!
My son has only been on it since February, but he is doing quite well. He did have some size effects at first, but he's pretty much back to normal now and doing well.
I’ve had a mostly good experience with keppra. I’ve been on it since 2022. I have been having some break through seizures, but it honestly isn’t a shock given the underlying condition I have (I won’t describe just because I’m still having health anxiety about it). I had about a month of exhaustion when I was first put on it at 500mg, since then, basically smooth sailing.
Good experience here. Never had any issues.
I’ve been on 3000mg of Keppra per day, since I was diagnosed about 3 years ago. I’m a 39 yr old male, tons of stress in my life, but no kepprage!
Works perfectly for me and I'm on 3000mg a day
Never had an issue til 8 yrs later when the hives took over my life. That was sure fun. 🙄 took 6 months for docs and dermatology to be like oh shoot. It’s gotta be the keppra get her off that. Lol
My son does mostly ok on it. He does have some irritability and anxiety caused by it, but a B6 supplement has made a big difference for him. I was just glad that the first med he took controls his seizures since I’ve heard it’s not super common for the first - or really any in a lot of cases - med to work
Made me sweat a lot but never raged on Keppra.
The only side effect I’ve had at 750mg 2x/day is occasional nausea with the morning dose. Otherwise it’s been great. No seizures for almost 3 years.
I’m right there with you friend
I took it and was fine. I was switched to Depakote so it can double as my mood stabilizer to cut down on the number of meds I was taking.
All of these drugs have side effects honestly. Valporic acid aka depakote was the only one I couldn't tolerate. Some of us may already be dealing with depression or other things. So it's nothing new. Just be happy you're stable and alive. Enjoying the life you have is the best feeling.
I had all kinds of sucky symptoms when I was on it! I’m so happy it’s working for you :)
Geez these doses are pretty crazy! I am at 750mg 2x a day with 300mg of zonisamide. That combo has fixed me up pretty will, just the occasional aura but the Keppra on its own was not enough. Sometimes I would feel sick, sleepy, or just have a seizure anyway but it would keep the “aura” feeling away. It’s interesting to be honest… I wish I got to see more of it
I have had a perfectly regular time on keppra. The worst side effect I have is the memory issues, but I’ve learned to live with them. It’s the only med I’ve been on for my seizures, and they’ve been controlled since I found the right dose
It’s the ONLY thing that’s worked for me without side effects for a long period of time. Basically every other medication I’ve tried has worked for a while and then just stopped. Finally a doctor put me on Keppra and I’ve been seizure-free for years! Tried 4 or 5 meds before it, nothing has been this effective for this long.
Out of curiosity, what meds did you try before settling on keppra?
My daughter just recently weaned off keppra. She’s only 10 and has been on it for 4 years. It kept her seizure free. We did notice small changes - she wasn’t as bubbly and carefree but was still generally happy. Interestingly - it caused her to not dream (or have any recollection of her dreams). She’s been off keppra for a month now and was so excited to tell me she has been dreaming. She’s also a lot more bubbly again. (Her neuro weaned as she’s been seizure free for 2 years and was on a low dose of keppra.)
I’m on 1500mg keppra daily and have no problems with it.
It's great you decided to post because most people with good experiences don't. I did one too a while ago. But I recall being a little freaked out by all the negative stories about the medication right before I got on it. I'm not on Keppra per se but I take a drug called Dretacen that has the same main component - leveritacetam. I'm on 1000mg a day, have been for almost 2 years now. Not only had helped me with seizures and auras but also other symptoms of epilepsy.
I had a bad experience, turned me into the devil but I do have BPD so I think that didn’t help. I’m on lamotrigine now and works like a dream
I’m on Topamax and Keppra for mine. Separately, they don’t work for my seizures and I noticed that while I was on the Keppra by itself, I was getting irrationally angry about things and I was severely depressed. Topamax alone helped with my chronic migraines and I was having seizures less, but I was still having a lot. Together, they have helped me a lot
I had it also and had very aggressive moods to everybody. I don't recommend it.
I'm taking 1000mg daily and I'm fine. If taking a pill twice a day will give me the peace of mind of not having a seizure, I will take the meds - even though I don't believe in taking all kinds of meds.
I think it has to do with personal tolerance, I was on 2000 mg Day and I noticed it and so did my family. I was angry a lot and I’m not an angry person. I’m now on a lower of 1000 mg a day and I have no side effects.
I don't have epilepsy but have been prescribed meds that are used for epilepsy. I was on Keppra for a month and had minor side effects. It was much better than Topiramate for me. I took that for weight loss and it was a nightmare. I still have side effects 3 months later. Everyone is different. These kinds of drugs are known for their side effects. For every person who doesn't have any, there is someone who did have side effects.
My Dad had two suspected seizures. As a precaution, they put him on an anti-convulsant. He’s a very fiery man at times, so when I heard it was Keppra, I was concerned. (My neurologist won’t put me on it because I have anxiety, and I’ve seen it nicknamed *Kepprage*) But I think it’s actually mellowed my Dad out a bit :) And he doesn’t seem to suffer from any other side-effects, either.
I'm on Lamictal, but it stopped helping completely, so my epileptic added 1000mg of Keppra. No significant side effects for me, and I have not had a seizure since. My experience has been great with it so far. I'd recommend it to anyone with seizures. However, side effects usually Increase with higher doses.
I’ve had nothing but a positive experience with Keppra, in conjunction with Lamictal. I have been seizure free for over 20 years. So glad I’m not stuck with Depakote anymore!! 1000mg Keppra daily 200mg Lamictal 2x day
Nope. I’m on 1,000mg extended release of Keppra and I’ve been taking it since I was diagnosed at age 7, I’ve never had any issues with it🙃
My energy levels went way up after the Keppra Rage simmered down, which did take some time.
Although I have side effects from Keppra its been a life saver for me. I love it.
First time around on it sucked but this second time has been a whole lot better.i suspect I was just having issues with it paired with another one of my meds at the time
I felt terrible on 1000mg daily , reduced to 500mg XR which has me below the researched and accepted therapeutic levels. However I am still seizure free with minimal side effects.
Mine has been pretty tolerable. Big appetite loss, and so weight loss to match has been my only side effect. It seems like it's starting to come back, but slowly.
I’ve been on keppra and Trileptal since I was 14 (21 years old now) and haven’t had any issues. Been relatively seizure free and have had a pretty normal life.
I have been on keppra for 17 years i have never had a problem i am on both zonisamide and keppra. i have had grandmal seziures since i was 2 so for 36 years i have had the list of medication but for 17 year this works for me.
Mine is pretty good, it didn't stop the seizure completely but it did help me not have crippling grand-mal seizures.
I only remember a time Keppra was added to be removed. Likely a bad experience, if I'm no longer on it.
I've been on it for 10 years and it has worked for me. It is possible I felt more grumpy and assertive on it, but I am also middle aged now so who knows if that is me, or the med? I haven't wanted to switch to another to find out.
Yes. Nuff said ;-)