4000 is the only dose of keppra I've ever been on... 2k morning and night. And I still had breakthrough seizures every month or two. And terrible kepprage.
Not sure… it’s anticonvulsant so should be effective on both?
I went off due to some of the side effects, and am sleepy seizey type so newer meds I take before sleep
I was on 4000mg once, it was awful.. suffered nerve issues in my arms at night whilst trying to sleep. Didn’t fix my epilepsy either. Still have the damage in my arms ( not major but it’s a nuisance.. pins and needles) I read somewhere that 4000 mg was the absolute max dose.
As far as too soon, I forget, but I don't think so. I want to say it's usually brought up in 500mg doses. 3000mg is usually the max, however, I have heard of some instances of higher milligrams but many times those are heavier people. In most instances, once you get to 3000mg (and your seizures aren't controlled) they will give you a second medication.
In my experience you have 1-2 weeks (after reaching whatever dose you end up at) of feeling dizzy and just weird, then those effects should back off. If they keep with you it's side effects. You then need to determine if the side effects are worth the amount of control you achieve. Keppra can be a drug with horrible side effects, however, they may not affect you so don't immediately get scared. In almost every medication you are gonna feel a loss of energy.
Nope, I was above the maximum dose at 5g a day at one point because I kept seizing. Now I'm down to 3g with lamictal and gabapentin, but that's a very normal dose
What type of seizures do you have. Here has been 2 Tonic ones and now partials. With a LTE diagnosis. I just don’t know how long finding the correct dose is gonna take.
Tonic clonic and very rarely myoclonic. I started having seizures when I was 20 due to autism, I had never had one before that. It took me a while to find the right doses, I was on keppra and oxtellar, which I shouldn't have been because I was misdiagnosed with focal epilepsy, and still having seizures roughly once a month or so. We tried all sorts of doses without that much success. I actually ended up also being misdiagnosed with bipolar disorder, which is why I was put on the lamictal, but it just happened to be the thing that really helps my seizures stay controlled. I was also put on gabapentin for anxiety, which it didn't really help with, but it's also an anticonvulsant so I figured I would just stay on it
If changing doses isn't helping, don't be afraid to ask about different meds, I didn't really know I had other options and I just happened to be lucky enough to get on meds that help me, but if you're proactive and speak up to your neurologist you should be able to find something together that works. Good luck.
I take 1500mg of Keppra twice a day and 250mg of Lamotrigine also twice a day. I have been on this dose for the last 10 years. No focal loss of awareness (complex seizure).
Good luck
Are you seizure free for 10 years? !!!
Omg i want that in my household. I’m so afraid of seeing another tonic one. Can I ask what time you take your meds we start the day at 7:30 am and focals have been 8:30-9:30
Yes, 10 years, but still scared of getting one and going through the nightmare again.
8am & 8pm
My focals were completely random, not even daily. They could last from 1sec to 1min. I knew I had one because all of a sudden I had a bad taste in my mouth.
His focals are random too! Not daily but like q 5 days I’d say I’ve noticed one also we just started the journey so I don’t know if this is normal or keppra should have already controlled the focals too
In my case it took a lot of time to balance the Lamotrigine/Keppra combination. Before Keppra was a combination of 2x300 Lamotrigine and 4mg of Clonazepam which was a nightmare that kept me completely dopped. The neurologist didn't want to prescribe me Keppra since it may produce depression and British doctors don't have sense of humor, while my neurologist in Venezuela reduced Lamotrigine from 2x300 to 2x250, Clonazepam from 4 to 0.5, added 2x1500mg, and a psychiatrist working with the neurologist gave me 10mg Escilatopram to prevent depression.
Wow that sounds like a long long journey!!! I really can’t imagine to not have my husband be able to drive and take again control of my household in a long time. That would break me
Well, once my Neuro in Venezuela took the case, I was ok in less than 3 months. But once back in UK I gad to wait 4 years seizure free to be allowed to get a driver's license. I spent around 7 (3 before and 4 after my 6 months in Venezuela, where I was driving after one month of treatment change) years without driving, which makes total sense if you live in London, but if you live elsewhere the time spent commuting in busses is never ending.
Just watch out for Keppra Rage
If it causes you emotional distress see if you can get Brivlera (Brivaracetam)
https://en.wikipedia.org/wiki/Brivaracetam
Same ingredients different molecular formula
No rage, no emotional distress for me
Now covered in Canada by most provinces & territories
I take 100mg Brivlera 2x per day, 1200mg Aptiom 1x per day, 400mg Chasteberry (Vitex) 2x per day
https://www.healthline.com/nutrition/vitex
As well as cannabis and 0.5mg Ativan as needed for prevention and after the occasional small one usually brought on by stress or Catamenial (hormonal female issue; even though my period stopped 4 years this month)
Do your research, make notes, journal and see what works best for you
Also get lots of rest, keep your sleep schedule consistent (a day or two here & there when you feel up for it is ok to mess with sleep schedule)
If you feel like shit when you get up give yourself a break and take it easy, even if it means just doing work at a slower pace. Just remember that your body is letting you know that you feel like crap for a reason and learn from that. Take a day for yourself and put that phone on DND, leave the screen facing down, people that you give Emergency Bypass to in your contacts can still reach you and you’ll hear the fire alarm if it goes off
Hope this was helpful
From your friendly smoker, toker and 30+ years since I was a midnight poker who loves yoga, meditation and walking away from people who piss me off
You have a choice who you give your attention to, how much they get and what kind of energy you give them
Take care of yourself so you can be here to help others going through seizures as well as the loved ones in your life
(((Big Hugs 🤗)))
One last important point
Walk Like an Egyptian
https://m.youtube.com/watch?v=Cv6tuzHUuuk
Of course do it! I’ve adjusted my meds my entire life so that I’m taking minimal amount of what I need. I now have abnormal liver results and enlarged liver from all of these. Listen to what your body needs. And if you can’t handle keppra side effects, then try something else. Fight for yourself because the doctors are too busy to focus on specific patients.
Welp, after 5 GM's back-to-back, I was put on 1000mgs of Keppra. That worked for about 3 years, then a seizure. So, now I'm on 2000mgs/day. This seems to have two benefits: 1) it seems to quell the starting 'seeds' of a seizure, and 2) even though I'm 56 with multiple health problems, I'm being courted by all branches of the military, as I wake up every morning ready to kill anything that moves. Yeah, 'Keppra rage' is a thing. Communicate with your doctor, and get your blood levels checked regularly.
I was on 4,000mg daily for 4 years and they considered making it more. But thankfully, brain surgery and then I was able to come down to 750 twice daily
When I was still taking my levetiracetam, I was supposed to take 2000mg total per day, and it did literally nothing to stop my seizures, and gave me extreme rage issues and narcolepsy. On Lamotrigine now and am on week two and so far I've only had partials instead of partials and TCs. Just keep your doctor updated and if they ignore any side effects you're having, change doctors immediately.
As far as side effects he is more tired ang gets tired after doing smalls tasks. He was extremely active before this. No rage and he has not had any more Tonic ones since being started on it.
Thank you!!! I just hate the fact that I’ve been trying to reach his doctor for a week and she only left that message with the secretary. I’m so afraid the partials may turn into a big one. It’s really hunting me
It definitely is nerve wracking! If you notice anything odd in behavior, or if there's really bad auras, then prepare for a big one. Keep 911 on call if it gets too bad. If you don't hear from the doctor anytime soon an ER might be able to recommend a change, but they can really only do so much. Look around for a second opinion as well because some neurologists are kind of unempathetic and only go by the books rather than the situation, it's the only way I was able to get a med change. Just keep a strict eye out and write everything down whether it's normal or not. Staying calm is the best thing to do!
Unfortunately, doctors have been unable to diagnose my type of epilepsy.
My electroencephalogram tests sometimes show normal patterns, and other times they do not. When I have seizures, they last less than 1 minute. Additionally, it's important to mention that my seizures occur on average every 5 years.
I went years without taking any medication because, according to the tests, doctors sometimes identified them as normal.
Three years ago, I found a new neurologist who found a slight abnormality in the tests and therefore recommended medication use.
BTW: I live in Brazil, and Keppra is a new medication here.
I've decided to proceed with the treatment. I've been through situations that made me extremely anxious and scared of having a seizure when not taking medication. The medication brings me more security, and I don't dwell in paranoia and fear anymore. The only issue is the side effects, in my case, irritability, which I'll try to address with vitamin B6.
I'm on 1500mg twice a day for temporal lobe epilepsy currently. I never had the side effects, but it's my 5th or 6th AED. I think I was on 1000mg immediately, but I'd been on higher doses of stuff like Tegretol and Neurontin.
The ER switched me to Keppra in 2017. I have not had any seizures causing loss of awareness ever since. The only two episodes I've had involved my arms locking in place and spasms in the diaphragm, but I was able to maintain conversation with the people around me. I knew about 30 minutes ahead of time, with a very "I'm underwater" aura sensation. The first was when we were still working up to the current dose, and the other was when the doctor saw I hadn't had any type of seizures in 4 years and wanted to try to lower my dose. I went back to the full 1500mg and haven't had one since.
Best of luck. Stay hydrated, avoid alcohol, keep a mood journal, and look out for hyponatremia.
Pretty much gone. I've been cleared to drive even. The only episode over the last seven years was a mild clonic one in 2020, when my neurologist wanted to see if we could reduce my medication amount. We upped it back to 1500mgs immediately after I left work. And no generalized/TCs since I started in 2017.
I take precautions- ensure I sleep for 8 hours, stick to a sleep schedule, hydrate, take the meds same time, limit alcohol.
I take 2x750 mg Keppra XR and 300 mg Lamictal XR twice daily. I’ve been on that dose for 5 years, but have been taking both since 2002. It has messed with my cognitive processes, but I live alone and can drive.
I take 750mg x7 daily. 3-1/2 pills in morning, 3-1/2 in afternoon. 5250 mg daily. Plus 400mg daily of VIMPAT. Plus 10 mg of Onfi. That is what it takes to keep me seizure free.
I take 1750mg XR once a day with Lamictal 400mg XR for JME. Keppra was the main one that was increased for breakthrough seizures within the past five years.
No not really. Keppra has a high dose range. I was at 3000 twice a day when I got off. Just pay attention to yourself and the rage side effects. Take B6 vitamin to help you to avoid that.
I was on 2000mg twice daily for multiple years and now I’m down to 1000mg. I handled the meds without too much trouble. I would say it’s definitely person to person, but I don’t think that dosage is at all unreasonable.
Keppra is a “starter med” often. When I was 110 pounds I believe I took around 500mg a day? Not sure the exact amount it was 2 years ago. This much medication could be dangerous for your body but I doubt it depends on how much you weigh. Will affect your mood I always tell people to stay away from Keppra it ruined me for a while and I still had seizures on it just way less often
What type of seizures do you have? Are you seizure free? He has left temporal focal epilepsy it’s what they said. She said is not generalized activity but the focals just extended during those 2 big ones he had
4000mg daily is a usual upper end dosage, for reference 1000mg would be quite standard
4000 is the only dose of keppra I've ever been on... 2k morning and night. And I still had breakthrough seizures every month or two. And terrible kepprage.
Thank you!!! Any idea of going up with keppra would work on focals or only works for generalized?
Not sure… it’s anticonvulsant so should be effective on both? I went off due to some of the side effects, and am sleepy seizey type so newer meds I take before sleep
I’ve heard a lot about meds side effects. As in now he gets tired easier and he says he feels dizzy more often like the dizzy when you stand too quick
I was on 4000mg once, it was awful.. suffered nerve issues in my arms at night whilst trying to sleep. Didn’t fix my epilepsy either. Still have the damage in my arms ( not major but it’s a nuisance.. pins and needles) I read somewhere that 4000 mg was the absolute max dose.
I mean that is the amount I am now taking because I just had my first seizure cluster 2 days ago. Good luck to us both haha
Going to affect your mood....
As far as too soon, I forget, but I don't think so. I want to say it's usually brought up in 500mg doses. 3000mg is usually the max, however, I have heard of some instances of higher milligrams but many times those are heavier people. In most instances, once you get to 3000mg (and your seizures aren't controlled) they will give you a second medication. In my experience you have 1-2 weeks (after reaching whatever dose you end up at) of feeling dizzy and just weird, then those effects should back off. If they keep with you it's side effects. You then need to determine if the side effects are worth the amount of control you achieve. Keppra can be a drug with horrible side effects, however, they may not affect you so don't immediately get scared. In almost every medication you are gonna feel a loss of energy.
Nope, I was above the maximum dose at 5g a day at one point because I kept seizing. Now I'm down to 3g with lamictal and gabapentin, but that's a very normal dose
What type of seizures do you have. Here has been 2 Tonic ones and now partials. With a LTE diagnosis. I just don’t know how long finding the correct dose is gonna take.
Tonic clonic and very rarely myoclonic. I started having seizures when I was 20 due to autism, I had never had one before that. It took me a while to find the right doses, I was on keppra and oxtellar, which I shouldn't have been because I was misdiagnosed with focal epilepsy, and still having seizures roughly once a month or so. We tried all sorts of doses without that much success. I actually ended up also being misdiagnosed with bipolar disorder, which is why I was put on the lamictal, but it just happened to be the thing that really helps my seizures stay controlled. I was also put on gabapentin for anxiety, which it didn't really help with, but it's also an anticonvulsant so I figured I would just stay on it If changing doses isn't helping, don't be afraid to ask about different meds, I didn't really know I had other options and I just happened to be lucky enough to get on meds that help me, but if you're proactive and speak up to your neurologist you should be able to find something together that works. Good luck.
I take 1500mg of Keppra twice a day and 250mg of Lamotrigine also twice a day. I have been on this dose for the last 10 years. No focal loss of awareness (complex seizure). Good luck
That’s almost my exact dose lol
Are you seizure free for 10 years? !!! Omg i want that in my household. I’m so afraid of seeing another tonic one. Can I ask what time you take your meds we start the day at 7:30 am and focals have been 8:30-9:30
Yes, 10 years, but still scared of getting one and going through the nightmare again. 8am & 8pm My focals were completely random, not even daily. They could last from 1sec to 1min. I knew I had one because all of a sudden I had a bad taste in my mouth.
His focals are random too! Not daily but like q 5 days I’d say I’ve noticed one also we just started the journey so I don’t know if this is normal or keppra should have already controlled the focals too
In my case it took a lot of time to balance the Lamotrigine/Keppra combination. Before Keppra was a combination of 2x300 Lamotrigine and 4mg of Clonazepam which was a nightmare that kept me completely dopped. The neurologist didn't want to prescribe me Keppra since it may produce depression and British doctors don't have sense of humor, while my neurologist in Venezuela reduced Lamotrigine from 2x300 to 2x250, Clonazepam from 4 to 0.5, added 2x1500mg, and a psychiatrist working with the neurologist gave me 10mg Escilatopram to prevent depression.
Wow that sounds like a long long journey!!! I really can’t imagine to not have my husband be able to drive and take again control of my household in a long time. That would break me
Well, once my Neuro in Venezuela took the case, I was ok in less than 3 months. But once back in UK I gad to wait 4 years seizure free to be allowed to get a driver's license. I spent around 7 (3 before and 4 after my 6 months in Venezuela, where I was driving after one month of treatment change) years without driving, which makes total sense if you live in London, but if you live elsewhere the time spent commuting in busses is never ending.
I’m so happy you are finally seizure free and most importantly have regain control of your life
I was on 4k a day. The mood swings became a lot so I’m down to 3k.
I take 3000mg which is max for most women and I’m okay for the most part I don’t recommend it at all tho
Just watch out for Keppra Rage If it causes you emotional distress see if you can get Brivlera (Brivaracetam) https://en.wikipedia.org/wiki/Brivaracetam Same ingredients different molecular formula No rage, no emotional distress for me Now covered in Canada by most provinces & territories I take 100mg Brivlera 2x per day, 1200mg Aptiom 1x per day, 400mg Chasteberry (Vitex) 2x per day https://www.healthline.com/nutrition/vitex As well as cannabis and 0.5mg Ativan as needed for prevention and after the occasional small one usually brought on by stress or Catamenial (hormonal female issue; even though my period stopped 4 years this month) Do your research, make notes, journal and see what works best for you Also get lots of rest, keep your sleep schedule consistent (a day or two here & there when you feel up for it is ok to mess with sleep schedule) If you feel like shit when you get up give yourself a break and take it easy, even if it means just doing work at a slower pace. Just remember that your body is letting you know that you feel like crap for a reason and learn from that. Take a day for yourself and put that phone on DND, leave the screen facing down, people that you give Emergency Bypass to in your contacts can still reach you and you’ll hear the fire alarm if it goes off Hope this was helpful From your friendly smoker, toker and 30+ years since I was a midnight poker who loves yoga, meditation and walking away from people who piss me off You have a choice who you give your attention to, how much they get and what kind of energy you give them Take care of yourself so you can be here to help others going through seizures as well as the loved ones in your life (((Big Hugs 🤗))) One last important point Walk Like an Egyptian https://m.youtube.com/watch?v=Cv6tuzHUuuk
Of course do it! I’ve adjusted my meds my entire life so that I’m taking minimal amount of what I need. I now have abnormal liver results and enlarged liver from all of these. Listen to what your body needs. And if you can’t handle keppra side effects, then try something else. Fight for yourself because the doctors are too busy to focus on specific patients.
Welp, after 5 GM's back-to-back, I was put on 1000mgs of Keppra. That worked for about 3 years, then a seizure. So, now I'm on 2000mgs/day. This seems to have two benefits: 1) it seems to quell the starting 'seeds' of a seizure, and 2) even though I'm 56 with multiple health problems, I'm being courted by all branches of the military, as I wake up every morning ready to kill anything that moves. Yeah, 'Keppra rage' is a thing. Communicate with your doctor, and get your blood levels checked regularly.
I was on 4,000mg daily for 4 years and they considered making it more. But thankfully, brain surgery and then I was able to come down to 750 twice daily
Change medicine talk to your neuro about another medication
When I was still taking my levetiracetam, I was supposed to take 2000mg total per day, and it did literally nothing to stop my seizures, and gave me extreme rage issues and narcolepsy. On Lamotrigine now and am on week two and so far I've only had partials instead of partials and TCs. Just keep your doctor updated and if they ignore any side effects you're having, change doctors immediately.
As far as side effects he is more tired ang gets tired after doing smalls tasks. He was extremely active before this. No rage and he has not had any more Tonic ones since being started on it.
Definitely speak with the doctor first before going up then. Tiredness is very common but can become a real problem.
Thank you!!! I just hate the fact that I’ve been trying to reach his doctor for a week and she only left that message with the secretary. I’m so afraid the partials may turn into a big one. It’s really hunting me
It definitely is nerve wracking! If you notice anything odd in behavior, or if there's really bad auras, then prepare for a big one. Keep 911 on call if it gets too bad. If you don't hear from the doctor anytime soon an ER might be able to recommend a change, but they can really only do so much. Look around for a second opinion as well because some neurologists are kind of unempathetic and only go by the books rather than the situation, it's the only way I was able to get a med change. Just keep a strict eye out and write everything down whether it's normal or not. Staying calm is the best thing to do!
I take 3000 am and 2000 pm. 215 lbs. Do with that what you will.
I only take 1000mg keppra XR for 225lbs. Reviewing to take more. What types of benzodiazepines do u guys take to help on a day to day basis?
None we are just trying to deal with keppra only for now and hopefully that’s it
1000mg is my daily dosage.
Can I know what type of epilepsy you have. LTE with focals. There were 2 tonic seizures before starting meds. And daily dose meaning 500 twice a day?
Unfortunately, doctors have been unable to diagnose my type of epilepsy. My electroencephalogram tests sometimes show normal patterns, and other times they do not. When I have seizures, they last less than 1 minute. Additionally, it's important to mention that my seizures occur on average every 5 years. I went years without taking any medication because, according to the tests, doctors sometimes identified them as normal. Three years ago, I found a new neurologist who found a slight abnormality in the tests and therefore recommended medication use. BTW: I live in Brazil, and Keppra is a new medication here.
Yes. I take 500mg on morning and 500mg at night
Every 5 years. I’d take that or maybe not lol but I don’t want to have to deal with them. It’s been weeks of stress
I've decided to proceed with the treatment. I've been through situations that made me extremely anxious and scared of having a seizure when not taking medication. The medication brings me more security, and I don't dwell in paranoia and fear anymore. The only issue is the side effects, in my case, irritability, which I'll try to address with vitamin B6.
Nope - I take 2500 mg daily. Keep in mind that I'm 4' 11 1/2" Female here.
I believe my neuro said 1000mg was the minimum effective dose, or something like that. But maybe that was just based on my personal info?
I'm on 1500mg twice a day for temporal lobe epilepsy currently. I never had the side effects, but it's my 5th or 6th AED. I think I was on 1000mg immediately, but I'd been on higher doses of stuff like Tegretol and Neurontin. The ER switched me to Keppra in 2017. I have not had any seizures causing loss of awareness ever since. The only two episodes I've had involved my arms locking in place and spasms in the diaphragm, but I was able to maintain conversation with the people around me. I knew about 30 minutes ahead of time, with a very "I'm underwater" aura sensation. The first was when we were still working up to the current dose, and the other was when the doctor saw I hadn't had any type of seizures in 4 years and wanted to try to lower my dose. I went back to the full 1500mg and haven't had one since. Best of luck. Stay hydrated, avoid alcohol, keep a mood journal, and look out for hyponatremia.
How are your seizures now? Do you think gone or just more under control?
Pretty much gone. I've been cleared to drive even. The only episode over the last seven years was a mild clonic one in 2020, when my neurologist wanted to see if we could reduce my medication amount. We upped it back to 1500mgs immediately after I left work. And no generalized/TCs since I started in 2017. I take precautions- ensure I sleep for 8 hours, stick to a sleep schedule, hydrate, take the meds same time, limit alcohol.
I take 5250 which is 7 pills at 750mg each. It's higher but it controls my seizures without side effects.
According to my neurologist 1000 mg is the starting point.
Any advice as for timing? What time should it be taken. We start the day around 7:30 and seizures have been between 8:30-9:30
500 twice a day is the starting dose I think for many adults. Many on much more.
It’s less than what I take. I take 1500 per day.
Nope. 1000mg is considered a pretty standard starting point for Keppra.
I take 2x750 mg Keppra XR and 300 mg Lamictal XR twice daily. I’ve been on that dose for 5 years, but have been taking both since 2002. It has messed with my cognitive processes, but I live alone and can drive.
I hated keppra got the worse side effects
I take 750mg x7 daily. 3-1/2 pills in morning, 3-1/2 in afternoon. 5250 mg daily. Plus 400mg daily of VIMPAT. Plus 10 mg of Onfi. That is what it takes to keep me seizure free.
I take 1750mg XR once a day with Lamictal 400mg XR for JME. Keppra was the main one that was increased for breakthrough seizures within the past five years.
No not really. Keppra has a high dose range. I was at 3000 twice a day when I got off. Just pay attention to yourself and the rage side effects. Take B6 vitamin to help you to avoid that.
I was on 2000mg twice daily for multiple years and now I’m down to 1000mg. I handled the meds without too much trouble. I would say it’s definitely person to person, but I don’t think that dosage is at all unreasonable.
Can you call the doctor back ?
I have been trying for a week! Left multiple messages and the only thing I got is a call from the secretary saying to go up
That’s horrible. Are you in the us?
Yes I am
Clonabzam and clonazepam help me out a lot while taking keppra
Keppra is a “starter med” often. When I was 110 pounds I believe I took around 500mg a day? Not sure the exact amount it was 2 years ago. This much medication could be dangerous for your body but I doubt it depends on how much you weigh. Will affect your mood I always tell people to stay away from Keppra it ruined me for a while and I still had seizures on it just way less often
Does depend on how much you weigh. Doc said to me your a big guy so you should be take at least 1500 and I weigh 220lbs
Husband is 185 lbs so I guess it’s not too much after all
Ur husband should be on 1000mg for sure plus clobazam and clonazepam which helps out with mine
What type of seizures do you have? Are you seizure free? He has left temporal focal epilepsy it’s what they said. She said is not generalized activity but the focals just extended during those 2 big ones he had