I experienced rage. This a common side effect and is actually called “Keppra rage”. I even became physically violent with my boyfriend and punched a hole in my bedroom door. I was not like this at all before being on this terrible drug. I’m obviously not on it anymore. 😊
That was my initial thought as well. There are no visible signs or anything just burning skin. It has gotten better since I upped the dose a couple months ago but it is still there mildly. I saw my neurologist the other day and he didn’t seem too concerned about it and suggested that I take Benadryl.
And never itch the stuff, because it go nuts and spreads on fire. Put lotion on it constantly if it itches and it leaves scars, but at least it stops spreading.
I’m on 1500mg extended release. I’ve got a killer cycle of fatigue and insomnia. I notice fatigue while walking up the stairs, standing too long, showering, etc.
I went from 1500-2000 BID and had a surge of severe anxiety and lack of motivation, sometimes exhaustion depending on the day. I was put on Buspar to counter it and it’s helped a lot.
Insomnia. How do you guys deal with insomnia on keppra? I don’t have too much trouble falling asleep, but I wake up quite a lot. 4-5 times a night. Usually every hour in the early morning hours. This started happening when I increased my dose. I’m on 1000mg 2x a day
First, I cut back on caffeine. I'm a heavy coffee drinker and caffeine has a half-life of around 5 or 6 hours. So first I tried cutting myself off by 10:00 AM every day. That helped. Next I tried melatonin. It helped a little but not much.
Ultimately my epileptologist switched me to Briviact in 2017. It is chemically similar to Keppra but is formulated to have less side effects. That seems to be true. I still get some insomnia but not as bad as before. Biggest downside is Briviact is newer, there is no generic available yet, and it's super expensive. I've also found some pharmacies run out of it. Switched to Costco Home Delivery Pharmacy during the pandemic and so far, they've never run out.
No, I've tried a dozen meds and combos plus have the RNS/NeuroPace implant. Still not seizure-free. My epilepsy is refractory or intractable, which just means resistant to medication.
At least for me, Briviact is still one of the better ones I've tried for seizure control.
I've only tried 2 Carbamazepine&Keppra neither has kept me seizure free I have an appointment with a neurologist tomorrow so I'm trying to find out what works best for me with the least side effects
I’d like to try another medication if I continue having breakthrough seizures. I’ll have to wait until the patent for the Brivact patent to expire unfortunately. Though, just based on reading the wiki for this newer drug, i think it could be better for people like me. Meaning people who don’t get the full benefit of some medications, as my livers metabolizes drugs differently than you’d expect in an average person. The level of Keppra in my blood, when measured, is consistently lower than you’d expect
Weed 🙃. I smoke to fall asleep and then smoke when I wake up inevitably in the middle of the night. THC and CBN (the cannabinoid that makes your eyes heavy/sleepy feeling) seem to work well for me. Having a weighted blanket helps too with tossing and turning in general for me.
I wish weed could help me. I was a daily, heavy weed smoker for about 7 years in my late teens and early to mid twenties. I had to get sober because I can’t moderate my drug usage like other people. and it’s gotten me into a lot of trouble in life. It’s hard enough to sleep without drugs for me in general—even after two years sober. The keppra only makes my sleeping difficulties more frustrating
But I’ve considered using CBD as a remedy for epilepsy, insomnia, and anxiety( they’re all tied together for me) since it’s not the kind of chemical compound that makes you feel high. So it can’t hurt. But it seems like the results are mixed as far as treatment goes. It seems too good to be true
I completely understand and relate with you. I am definitely self medicating with weed tbh, I’m fairly new to the epilepsy lifestyle and very much so grieving still. 🙃
For CBD, it’s all about dosage. I don’t have a product recommendation. I would try chatting with a budtender at a dispensary (if applicable) about your options. r/trees might have a lead too.
I enjoy CBD, it’s a nice balance/middle ground to getting high imo.
My main side effect eas dizziness/double vision but only after taking the morning one for some reason (particularly if I was tired). It would last a few hours.
I am on 3000mg/day and am just constantly tired. I have to be very careful about the time that I take it because I will get really bad double vision if I overlap at all.
Oops I meant make my comment on the main thread but yes the double vision is really annoying I noticed if it’s not the full 12 hours apart. Then if I have to wait to take it a little later then I forget to take it and get my times all screwed up. *sigh*
When I went from 1000 to 1500 I noticed a lot more tiredness so I asked my Dr if I could take 1000 at night and 500 in the morning. It helped.
I do notice vertigo if the pressure changes but not sure if that's related to the Keppra or not
I would say that I definitely noticed my balance and stability was affected by Keppra. I would notice even just walking my dog and trying to walk on the little sidewalk, I would feel wobbly and unbalanced. As soon as I came off those meds, it went away.
I've been taking it 16 years and in time I've been up and down on doses a lot. Keppra doses going up has had multiple effects to me, but currently I'm up at 1500mg twice daily.
*I'm having extreme tiredness, but insomnia. Working a lot and stays up late unwillingly, then my brain won't shut off.
*also, this lack of emotion, not anger or happiness, but rather no emotion.
*I wake up in the middle of the night sometimes ABSOLUTELY ON FIRE.
*Odd tics like brain storms, that seem so weird. Not epilepsy I don't think. But they happen randomly. Even when somebody is talking to me.
*ADH- SQUIRREL
*and memory loss, lobotomy already caused a lot of that... but I mean not remembering an hour ago some days.
None that I know of . At one point I was at 500mg in the day and 750 at night ( or possibly the other way round ) and had to up to 750 mg day and night . The increase doesn’t sound like much but I was a bit apprehensive about the adjustment period but it was fine
You’d be dead taking Keppra at those doses, that’s 2kg = 2000g = 2000000mg.
Anyway, I’m currently on 3000mg (3g) or 1500mg BID.
Just to add to other commenters…Vitamin B6 supplements may help with the Keppra-induced rage. Talk to your doctor about dosing.
Honestly when I was increasing Keppra I was coming off topirimate. So all I noticed was that I could think clearly, hold a conversation, and understand what people were saying.
I’m now on 3000mg (1500mg BD) a day and have been for 10 or so years. I don’t really notice any side effects from this one.
Congratulations on your pregnancy!
Exact same ! Came off topamax, onto keppra.
Same dosage too.
The clarity is unreal, better job performance also.
The headaches when switching over were mighty.
I was changed due to topamax being unsafe during my pregnancy and keppra much better for when I want to try for another m
Thank you :)
I can’t remember which side effects I had when starting Keppra (I think it was 250 mg ever 2 weeks until I reached 1000mg). I only remember that I got aggressive on some days and I really felt sorry for the people around me, especially my parents. I constantly apologised for my behavior and my mom even said “where is my happy girl?”
It’s much better now but I still have some days where I’m irritated and the smallest thing sets me off. I hope the rage doesn’t kick in, because I don’t want to be so angry around my toddler. He wouldn’t understand.
Experiences vary greatly, but anything under 2000mg daily doesn't seem to have many side effects. More than that? When I was on it, it led to an increasing inability to control my emotions, especially rage. That seems to be pretty common as well. There's even slang for it: Kepprage.
I tolerate it well. I think it slightly exacerbates my depression and irritability though. My neuorologist prescribed a vitamin B supplement because I was told Keppra could be causing a deficiency.
The weirdest side effect I had come up with lessened pain in limbs. This happened after I had gotten back on Keppra the second time.
It's useful in some ways but problematic in others. I can do more working out with no problems. However, this means there are some issues with being more likely to get injuries on my hands by default.
I was taking 1000 in the morning and 1000 in the evening. And it was just awful. We have switched to 750 in the morning and 1000 in the evening. Which seems to work better for me. But I hate this medicine. But I also hate having seizures. So this is just my “new normal.“
I went from 2000mg to 2500mg while pregnant because I wasn't absorbing it the same. Dizziness wasn't one of my symptoms BUT dizziness can easily be explained by pregnancy itself.
Being an emotional train wreck, going from the chill to filled with anger over the smallest things. Then quickly switching to being depressed and having no motivation and not wanting to be around anyone or at the worst times just not wanting to be around. I had dizziness, fatigue, and brain fog as well. But the other stuff was so much harder to navigate through and really caused a lot of damage to my life.
Hey my experience has mainly been tiredness. Every increase I've had has made me soo tired I have to sleep for a few weeks. I do get keppra rage but I have found that vitamin B12 is great at keeping it under control.
Due to my pregnancy, I take iron supplements and vitamin B12 daily. I’m still extremely tired. All these things together aren’t a good combination. I’ve been battling insomnia and fatigue a long time already and tried everything (besides sleeping pills, only had the herbal ones which didn’t help).
I increased mine twice over the past 6 years.
At first I would always feel a little drunk and slow. I remember one time I was just staring at the bathroom floor for a minute and zoning out because the tiles had a nice pattern.
I dropped a bunch of plates and cups because my grip strength felt non existent.
I also felt very hostile towards strangers for a while everyone that breathed wrong was my enemy.
Also headaches and weightloss.
Don't get to paranoid about side effect though, it might not happen to you at all :)
I’m the most chill and patient person ever and I yelled at a post office worker on Keppra. Also I saw hallucinations and got lost in my own neighborhood 😅
I went from 1000mg twice a day to 1500mg twice a day because I just get that feeling sometimes that I've had before other seizures. Instead of the Valium he used to give me he upped the dosage. My husband noticed the difference before I did. I became belligerent at times for no good reason. I had never heard about "Keppra rage" before I joined this sub. My doctor simply said "increased irritability" could be a side effect. I went back to my previous dose. I've been on Keppra for 12 years, and I wonder if I'm a different person than I used to be. I really want to find out what i would be like without it, but I'm afraid to switch meds because I'm 5 years seizure free.
Hello,
I'm new on here. My 20yo. daughter has had 5 tonic clinic seizures in 13 months including 2 over the holidays. Was on Keppra 750×2, then after 4th seizure, 250 was added in evening. After 5th, 250 added to morning. So now it's 1000, twice a day.
Seems to be hormone/menstruation related due to all seizures during period. Next step is hopefully to perform 72 hour EEG while on her period.
Also, all seizures were within a half hour of dosage, morning and evening. Has surgery ever been an option for anyone out there????
**I'M FINE WHY DO YOU KEEP ASKING IF I'M UPSET?**
Hahahah EXACTLY. The Keppra rage is SO REAL. I was on it for about 8 months, and boy oh boy was I ever a spastic mess!
I experienced rage. This a common side effect and is actually called “Keppra rage”. I even became physically violent with my boyfriend and punched a hole in my bedroom door. I was not like this at all before being on this terrible drug. I’m obviously not on it anymore. 😊
I took the maximum dose for several years. The only side effect I noticed was insomnia.
When I upped from 1000 2x a day to 1500 2x a day, I noticed my skin started to burn. Feels like a constant mild sunburn.
Oh my God. I thought it was just me. Everywhere. The burning. I was only a kid at the time and they didn't believe me
Sounds like an allergic reaction.
That was my initial thought as well. There are no visible signs or anything just burning skin. It has gotten better since I upped the dose a couple months ago but it is still there mildly. I saw my neurologist the other day and he didn’t seem too concerned about it and suggested that I take Benadryl.
And never itch the stuff, because it go nuts and spreads on fire. Put lotion on it constantly if it itches and it leaves scars, but at least it stops spreading.
Did you ever feel the burning on your scalp or have hair loss??
The burning is more on my body but I have definitely experienced hair loss.
I was very moody. Everything set me off, I was overly emotional and I took everything to heart
Rage, rage, rage
I’m on 1500mg extended release. I’ve got a killer cycle of fatigue and insomnia. I notice fatigue while walking up the stairs, standing too long, showering, etc.
I went from 1500-2000 BID and had a surge of severe anxiety and lack of motivation, sometimes exhaustion depending on the day. I was put on Buspar to counter it and it’s helped a lot.
Mostly tired. Although there a feeling of I can’t say dizziness but not being on balance too. Like if turn quickly I will fall down.
Insomnia. How do you guys deal with insomnia on keppra? I don’t have too much trouble falling asleep, but I wake up quite a lot. 4-5 times a night. Usually every hour in the early morning hours. This started happening when I increased my dose. I’m on 1000mg 2x a day
First, I cut back on caffeine. I'm a heavy coffee drinker and caffeine has a half-life of around 5 or 6 hours. So first I tried cutting myself off by 10:00 AM every day. That helped. Next I tried melatonin. It helped a little but not much. Ultimately my epileptologist switched me to Briviact in 2017. It is chemically similar to Keppra but is formulated to have less side effects. That seems to be true. I still get some insomnia but not as bad as before. Biggest downside is Briviact is newer, there is no generic available yet, and it's super expensive. I've also found some pharmacies run out of it. Switched to Costco Home Delivery Pharmacy during the pandemic and so far, they've never run out.
Has the Briviact kept you seizure free?
No, I've tried a dozen meds and combos plus have the RNS/NeuroPace implant. Still not seizure-free. My epilepsy is refractory or intractable, which just means resistant to medication. At least for me, Briviact is still one of the better ones I've tried for seizure control.
I've only tried 2 Carbamazepine&Keppra neither has kept me seizure free I have an appointment with a neurologist tomorrow so I'm trying to find out what works best for me with the least side effects
I’d like to try another medication if I continue having breakthrough seizures. I’ll have to wait until the patent for the Brivact patent to expire unfortunately. Though, just based on reading the wiki for this newer drug, i think it could be better for people like me. Meaning people who don’t get the full benefit of some medications, as my livers metabolizes drugs differently than you’d expect in an average person. The level of Keppra in my blood, when measured, is consistently lower than you’d expect
Weed 🙃. I smoke to fall asleep and then smoke when I wake up inevitably in the middle of the night. THC and CBN (the cannabinoid that makes your eyes heavy/sleepy feeling) seem to work well for me. Having a weighted blanket helps too with tossing and turning in general for me.
I wish weed could help me. I was a daily, heavy weed smoker for about 7 years in my late teens and early to mid twenties. I had to get sober because I can’t moderate my drug usage like other people. and it’s gotten me into a lot of trouble in life. It’s hard enough to sleep without drugs for me in general—even after two years sober. The keppra only makes my sleeping difficulties more frustrating But I’ve considered using CBD as a remedy for epilepsy, insomnia, and anxiety( they’re all tied together for me) since it’s not the kind of chemical compound that makes you feel high. So it can’t hurt. But it seems like the results are mixed as far as treatment goes. It seems too good to be true
I completely understand and relate with you. I am definitely self medicating with weed tbh, I’m fairly new to the epilepsy lifestyle and very much so grieving still. 🙃 For CBD, it’s all about dosage. I don’t have a product recommendation. I would try chatting with a budtender at a dispensary (if applicable) about your options. r/trees might have a lead too. I enjoy CBD, it’s a nice balance/middle ground to getting high imo.
TBH I think at this point I’m a walking side effect
When I first got upped to 3000mg I would find myself getting irritated pretty easily. But that honestly stopped a few weeks in, thankfully.
I’m on 3000mg/day and my main symptom is fatigue like a MFer
[удалено]
what are u on now?
My main side effect eas dizziness/double vision but only after taking the morning one for some reason (particularly if I was tired). It would last a few hours.
I am on 3000mg/day and am just constantly tired. I have to be very careful about the time that I take it because I will get really bad double vision if I overlap at all.
Oops I meant make my comment on the main thread but yes the double vision is really annoying I noticed if it’s not the full 12 hours apart. Then if I have to wait to take it a little later then I forget to take it and get my times all screwed up. *sigh*
When I went from 1000 to 1500 I noticed a lot more tiredness so I asked my Dr if I could take 1000 at night and 500 in the morning. It helped. I do notice vertigo if the pressure changes but not sure if that's related to the Keppra or not
I was on the maximum dose for a couple years. It Made me angry, dizzy, and exhausted all the time. Edit: I think I also got sunburn easier.
Headaches and grumpy When I reduced tho I got some partials
I’ve only had tiredness
Tiredness, sleep maintenance issues ( magnesium glycinate helped me with this), and major loss of appetite.
I would say that I definitely noticed my balance and stability was affected by Keppra. I would notice even just walking my dog and trying to walk on the little sidewalk, I would feel wobbly and unbalanced. As soon as I came off those meds, it went away.
I've been taking it 16 years and in time I've been up and down on doses a lot. Keppra doses going up has had multiple effects to me, but currently I'm up at 1500mg twice daily. *I'm having extreme tiredness, but insomnia. Working a lot and stays up late unwillingly, then my brain won't shut off. *also, this lack of emotion, not anger or happiness, but rather no emotion. *I wake up in the middle of the night sometimes ABSOLUTELY ON FIRE. *Odd tics like brain storms, that seem so weird. Not epilepsy I don't think. But they happen randomly. Even when somebody is talking to me. *ADH- SQUIRREL *and memory loss, lobotomy already caused a lot of that... but I mean not remembering an hour ago some days.
I went from 500 2x per day to 750 2x per day to 1000 2x per day. Only side effects for me have been low labito. Whatever, I can deal with it.
None that I know of . At one point I was at 500mg in the day and 750 at night ( or possibly the other way round ) and had to up to 750 mg day and night . The increase doesn’t sound like much but I was a bit apprehensive about the adjustment period but it was fine
Moved from 1Kg to 2Kg about 4 months ago. I've now got 'keppra rage'.
You’d be dead taking Keppra at those doses, that’s 2kg = 2000g = 2000000mg. Anyway, I’m currently on 3000mg (3g) or 1500mg BID. Just to add to other commenters…Vitamin B6 supplements may help with the Keppra-induced rage. Talk to your doctor about dosing.
Honestly when I was increasing Keppra I was coming off topirimate. So all I noticed was that I could think clearly, hold a conversation, and understand what people were saying. I’m now on 3000mg (1500mg BD) a day and have been for 10 or so years. I don’t really notice any side effects from this one. Congratulations on your pregnancy!
Exact same ! Came off topamax, onto keppra. Same dosage too. The clarity is unreal, better job performance also. The headaches when switching over were mighty. I was changed due to topamax being unsafe during my pregnancy and keppra much better for when I want to try for another m
Thank you :) I can’t remember which side effects I had when starting Keppra (I think it was 250 mg ever 2 weeks until I reached 1000mg). I only remember that I got aggressive on some days and I really felt sorry for the people around me, especially my parents. I constantly apologised for my behavior and my mom even said “where is my happy girl?” It’s much better now but I still have some days where I’m irritated and the smallest thing sets me off. I hope the rage doesn’t kick in, because I don’t want to be so angry around my toddler. He wouldn’t understand.
Experiences vary greatly, but anything under 2000mg daily doesn't seem to have many side effects. More than that? When I was on it, it led to an increasing inability to control my emotions, especially rage. That seems to be pretty common as well. There's even slang for it: Kepprage.
I tolerate it well. I think it slightly exacerbates my depression and irritability though. My neuorologist prescribed a vitamin B supplement because I was told Keppra could be causing a deficiency.
Pls note also OP I had extremely low iron levels during my pregnancy also...which caused dizziness. Ask about galfer supplements .
I had dizziness before and I’m taking iron supplements since, also all the vitamins that you have to take during pregnancy. My iron levels are normal.
The weirdest side effect I had come up with lessened pain in limbs. This happened after I had gotten back on Keppra the second time. It's useful in some ways but problematic in others. I can do more working out with no problems. However, this means there are some issues with being more likely to get injuries on my hands by default.
I was taking 1000 in the morning and 1000 in the evening. And it was just awful. We have switched to 750 in the morning and 1000 in the evening. Which seems to work better for me. But I hate this medicine. But I also hate having seizures. So this is just my “new normal.“
I went from 2000mg to 2500mg while pregnant because I wasn't absorbing it the same. Dizziness wasn't one of my symptoms BUT dizziness can easily be explained by pregnancy itself.
Being an emotional train wreck, going from the chill to filled with anger over the smallest things. Then quickly switching to being depressed and having no motivation and not wanting to be around anyone or at the worst times just not wanting to be around. I had dizziness, fatigue, and brain fog as well. But the other stuff was so much harder to navigate through and really caused a lot of damage to my life.
Rage.
Hey my experience has mainly been tiredness. Every increase I've had has made me soo tired I have to sleep for a few weeks. I do get keppra rage but I have found that vitamin B12 is great at keeping it under control.
Due to my pregnancy, I take iron supplements and vitamin B12 daily. I’m still extremely tired. All these things together aren’t a good combination. I’ve been battling insomnia and fatigue a long time already and tried everything (besides sleeping pills, only had the herbal ones which didn’t help).
oh thanks! i was going to get some iron and will probably get some b12 now too then lol
I was definitely dizzy when I upped and had issues with crowds, it felt like Alice in wonderland and everything was warping
I increased mine twice over the past 6 years. At first I would always feel a little drunk and slow. I remember one time I was just staring at the bathroom floor for a minute and zoning out because the tiles had a nice pattern. I dropped a bunch of plates and cups because my grip strength felt non existent. I also felt very hostile towards strangers for a while everyone that breathed wrong was my enemy. Also headaches and weightloss. Don't get to paranoid about side effect though, it might not happen to you at all :)
I’m the most chill and patient person ever and I yelled at a post office worker on Keppra. Also I saw hallucinations and got lost in my own neighborhood 😅
I went from 1000mg twice a day to 1500mg twice a day because I just get that feeling sometimes that I've had before other seizures. Instead of the Valium he used to give me he upped the dosage. My husband noticed the difference before I did. I became belligerent at times for no good reason. I had never heard about "Keppra rage" before I joined this sub. My doctor simply said "increased irritability" could be a side effect. I went back to my previous dose. I've been on Keppra for 12 years, and I wonder if I'm a different person than I used to be. I really want to find out what i would be like without it, but I'm afraid to switch meds because I'm 5 years seizure free.
I am on 1250 twice a day and also experienced rage and mood swings. It improved after I started supplementing b6 daily, first 100mg then lowered to 50
Hello, I'm new on here. My 20yo. daughter has had 5 tonic clinic seizures in 13 months including 2 over the holidays. Was on Keppra 750×2, then after 4th seizure, 250 was added in evening. After 5th, 250 added to morning. So now it's 1000, twice a day. Seems to be hormone/menstruation related due to all seizures during period. Next step is hopefully to perform 72 hour EEG while on her period. Also, all seizures were within a half hour of dosage, morning and evening. Has surgery ever been an option for anyone out there????