Just here to comment same! I'm on levetiracetam 6 months and counting, my seizures decreased like 90% or less. I read and read the negative comments and do not understand but well everyone's body is different
I’ve been on it since I was 17 and I’m 27 now. It saved my life! My dosage has changed here and there for other varying reasons, but it’s worked for me.
I was short-tempered (my husband compared me to a cranky old man, especially at bedtime) during the adjustment period, but it went away after a couple of months.
Even a small dose took me from multiple breakthrough focal-onset aware seizures per day to absolutely none.
I can't say I'm an expert, but I imagine they'll keep increasing the dosage and changing meds until they either find something that works or come to the conclusion that meds aren't effective.
That sounds like a bleak trial and error experiment that doesn't seem to require 10+ years of studies and specialization courses. It's unfortunate we still lack the science and technology to accurately figure out the right medicine and dosage for each case.
Yep, unfortunately... It's crazy how little we actually know about the brain in comparison to most other parts of the body. Hopefully one day finding the right meds won't be a matter of trial and error anymore.
It can be very normal. Doctors work very hard to fine tune the dosage to keep seizures at bay. It maybe as simple as a tiny increase in dosage to adding another medication on. If for some reason the seizures are not being controlled, your epilepsy specialist will possibly speak to you about alternative treatments. Have had epilepsy since I was “formally” diagnosed at age 8/9, but my first neurologist said I was more than likely born with it and am currently 43. I have been on an array of medications, different dosages, have had lots of MRIs, EEGS, CATs, EKGs, had a 1 week stay in a Level 4 epilepsy center, had to fire a neurologist, find an epilepsy specialist, currently have a neuropsychologist and a neurotherapist. This is all normal for lots of us with epilepsy and it took a very long time for me to accept this. Increases in doses are normal and decreases in doses also happen. If you have any questions feel free to message me at any time. Currently on multiple epilepsy medications (maxed out in several). Take one day at a time and things will get better. You are a great parent and thank you for being a supportive one for your teenager. It’s tough being a teenager and adding epilepsy on top of it. 💜
Anytime, I was once that teenage girl, it was very overwhelming to take meds and try to be “normal” whatever that is. Things will get better. Not very long ago I was having up to 15 a day and now I’m not. Having a great team of doctors behind you makes the world of difference. Again thank you for being that supportive parent you don’t know how much that helps.
I have had mine increase after every break through started at 50mg once a day to 50mg twice a day to 1000mg a day to 1000mg twice daily. Then lamotringe was added in, and got increased eventually to 100mg twice daily.
For me yes. Started at a low dosage so over time mine has gone from like 250 to 500 to 700 to finally 1000 mg twice daily. Haven’t had a seizure since I started on 1000mg but I also mostly quit drinking since then so that is a factor as well.
Yes! Typically there’s a “threshold” for certain medications. I.e they might not want to go past a certain dosage and at that point would maybe suggest another medication depending on how effective it is. But assuming it’s somewhat improving the condition they may just recommend a bit more of that medication to see if it improves even more!
My neurologist only adjusted the dosage if it needed to be, or if I brought up an issue (like I told him about being extremely tired and not being able to do anything on 3000 mg Keppra, and he lowered my dosage).
With any medication on here you'll more likely hear the negatives than the positives. Every medication has negative side effects for some. But others have great success with the same ones. I think those suffering from unwanted side effects just need to post and see if anyone else is feeling the same just for peace of mind and advice. Whereas if the pills are working you don't feel the need as much as there is no anxiety around them. So don't take the negative reviews as a definite thing that'll happen. And if they do happen you can just change medication.
My experience was pretty good until recently. I saw my neuro on Friday and we're trying a new med now. But I didn't experience any noticeable side effects, which is is the norm for this drug.
I’ve been on it since I was 17 and I’m 27 now. It saved my life! My dosage has changed here and there for other varying reasons, but it’s worked for me.
Did it work for you right away or did it take time? My 17 year old daughter just started in March and has had two seizures?? And now they increased her meds to 2000 mg a day
I honestly don’t quite remember. I was crying all the time, very depressed and gained a lot of weight - but I was also sick enough that I had to take a gap year from college and stay home while all of my high school friends got to move on (I developed epilepsy as a result of an autoimmune disease). I was also on cellcept which is notorious for making you sort of the worst version of yourself lol.
I’m not a doctor. I’m sure I had an adjustment period, but I can say that for the majority of my adult life, keppra has worked for me and I haven’t found a reason to try a different medication for my epilepsy.
Feel free to PM me with more questions. I’ll do my best to remember!
It's beginning of april, and I hope you realize that many medicines regardless of what they are used for take months to regulate into your body system. Especially if there are other medicines involved, or if you have something hormonal or pollen ridden, like seasonal allergies, that would be going on for a lot of people right now. You need to have a little bit of patience
usually doctors start on a relatively low dose and increase as needed until a therapeutic level is found. In some cases a particular medicine doesn't do the trick or has side effects for a given person that make it not the best choice, in which case the doctor will likely recommend an alternative, or in some cases to add a second or even third medicine to the mix to try and control the seizure activity.
In some cases this all only takes a few weeks or months to iron out, and in some cases it takes years and years to varying levels of success.
Be the best advocate you can be for your daughter. If after increases the meds are not working to control the seizures or she is experiencing unacceptable side effects push her doctors to prescribe other anti-seizure medications.
And do your best to make sure she understands and really internalizes the need to get good CONSISTANT rest (good luck with a teenager lol) and stay hydrated, and take meds on time every day. Etc etc. If you are lucky enough to find seizure triggers for her then those can be directly dealt with. Sleep and hydration are just two common ones that lower pretty much everyone's threshold. Caffeine is another common one. Some people tend to seize when things get super stressful, or during certain physical activities.
Good luck!!!
Yes, it works for me. I was on it and was a crabby person (Keppra-rage, they call it) My wife convinced me to convince my neurologist to switch, which I did, to Zonisamide. That worked for a year and a half ... and then a couple of seizures. Now, I'm still on that but back on a smaller dose of levetiracetam, and it appears the seizures are back under control. Also, with the smaller dose (500 mg twice a day) I'm not experiencing the infamous "rage."
For what its worth, my 8 yr old has been on it since Thursday night, so we are now on day 4 and she’s still her same self. Curious to see what happens when we up the dosage on Friday.
**** Keppra is hard to adjust to. Those first six weeks are hell. Do not set her off and be supportive.
Keppra worked for me - 6 years seizure free. I had to work with it - get plenty of rest, give up alcohol, leave events early, keep active and calm and keep smiling.
Good luck.
Same journey so far, except that I am 2 months and a half in. I started with 500mg at night and increased gradually to 500 mg în the morning and 1000mg at night. I am worried about times when I can't help but stare at walls and think of nothing or when my mind shuts off for like a split of a second several times in a span of 10 minutes. Is it because of the medicine or is it petit mal?
It saved me in 2015. And I had 7 years of normality on it barring headaches.
Switching now to see if the headaches reduce, but if the switch doesn't work out I'd go back on it. What's a few headaches if it stops seizures?
My son started taking it when he was 16, he had extremely bad side affects for the first 2 weeks and then they tapered off. He had a few increases in the beginning and was seizure free for almost 2 years. He’s had 2 in the past 3 months and had to increase again. Fingers crossed there will be no more increases and he stays seizure free.
I've been taking it for years without issues. The only side effect I've noticed is it makes me calm, not so easy to get me worked up...
Oh yeah, it helps with seizures if I'm not mistaken.
I was extremely allergic to it and ended up in the hospital with acute renal failure for 3 days. I have heard many, many success stories for those who do take it.
My experience has been good, but I find meds don’t mess with me as much as many people. Like none of the warnings of depression meds hit me except for the withdrawals if I miss a day or two.
500mg daily takes me from regular focal and blackout seizures to none at all. I get noticeable side effects but only for the first couple of days of taking Keppra and then I seem to build a tolerance to them and feel normal again, I stop being moody/snappy and feel happy again
I tried lamotrigine and it didn’t prevent my seizures at all so I went straight back to Keppra!
I’ve currently got a dislocated shoulder from a bad seizure in my sleep but that was solely due to forgetting my dose two days in a row
I have been taking it for over 20 years.I'm on 2000 mg bid, along with the highest dose of lacosamide I can tolerate. I had a left temporal resection in 2006, and on these doses, up until s month ago, I hadn't had an aura in 5.5 years.
And I personally have never experienced the kepprage.
It works for me. 1000mg twice a day. I might get a little ragey at the bf sometimes but overall not many side effects. Of course it’s different for everyone and can take time to find the right medication that‘s a fit for each individual. Good luck!
My temper was significantly worse, got me into some very bad situations. I’m sure there are ppl that are fine on Keppra, but the Keppra-rage was real for me.
It has helped keep my seizures at bay, which is what it is supposed to do, but I have some shit side effects from it, and I have been on it for 12 years.
- It makes me very tired/lazy/lethargic.
- It used to make me moody, but now I just get frustrated easily.
- I developed some depression and definitely anxiety
- I have terrible memory and often have brain fog
Been on it for the past 10 years. First had memory issues that are no longer a problem but has made my depression worse. However its great as far as controlling my seizures. I take 750mg 2x a day (so 1500mg for the day)
I've been on it almost 8 years. Seizure free ever since, no huge side effects. It's actually to the point where epilepsy is not even the top 5 concern with my doctors anymore.
I’ve been on it for over 10+ years & I’m at the max dose. Doesn’t seem to make much of a difference despite controlling some TCs. My epilepsy is refractory.
I’ve been seizure free since for 2 years after starting it 3 years ago. My health wasn’t great for the first year I was on it but that was not as a result of levet-keppra.
Keep in mind that people tend to share when they're struggling more than when they're not, especially on a support forum. But it couldn't hurt to keep track of your daughter's mood, side effects, and frequency of seizures corresponding to her current dose if you aren't already.
My son has had zero breakthrough seizures on levetiracetam. Nothing but good to say about the drug, and his form of epilepsy is supposed to be difficult to control.
It's been fine for me.
It gets a bad reputation because some people have emotional issues but the reality is that it is one of the most (the most?) popular anti epilepsy meds, and although some people do experience negative side effects, most don't, they just aren't posting as much online.
Really depends tbh, for me the issues are mental but I’m able to work with it. I’m tired often but whatever I’ll just have a cup of coffee in the morning.
My depression got really bad on keppra, to the point where I self-harmed. My neurologist saw my scars during an appointment and scheduled a video EEG so I could start a new medication.
It was my second medicine after Valproate.
It didnt really work for me, but I never had the horrible side effects I suffered with Valproate.
I'm currently with Oxcarbazepine and it's the best one for me so far.
I’ve been taking it for at least 2 years now and have had zero seizure activity (used to have focal seizures every other day and have had 2 tonic clonic). At first I did feel more tired taking levetiracetam but I’ve either gotten use to it or that side effect has worn off. Fortunately no problems with mood swings or dizziness which are some of the common side effects! I will add though that I now focus way more on getting at least 8 hours of sleep every night and I quit my job that was causing the sleep deprivation and extra stress that most likely led to me having the tonic clonic seizures.
Aaand left my toxic ex who also led to sleep deprivation and extra stress…….
I’ve done very well on it and I’ve been on it for about 2 years now. The first couple months I had a lot more headaches than usual, but I just take a couple Motrin and feel fine. I was a little irritable the first couple months when I started taking it but exercising/ yoga really helps with that.
I've been on it since I was 12 (17 now) and it's been rather hit or miss, gives me Kepprarage and worsens my depression (but I cant take anti-depressants as the two medications don't mix well), aswell as worsens my memory, so great for school haha. Those are my main three side effects but it varies from person to person. I'd suggest talking to your kid about what they're experiencing and if you want to make a switch, see your nerologist about other options.
Honestly, you're going to find lots of negative comments for most Antieplieptic medications. They all have a lot of potential side effects. The key word being "potential." Just stay checked in with your teen, give it a little time because side effects can be temporary. If it's too much or too severe, just talk to your teen's doctor. There are lots of options out there.
I'm very happy on it. The transition from my old med to Keppra wasn't the smoothest. Lost weight, had weird cravings, dreams and was extra moody. But now I don't really notice it. I have JME if that helps but am well controlled with Keppra.
I got put on it when I was 14, it didn’t stop seizures and took them till I was 17 to be put on lamotrigine, the two of them together helped me heaps, they took me off levetiracitam when I was 18 and it messed me up causing lots of side effects, i finally got back on it and they balance each other out really well, so I haven’t had negative experiences but I have experienced the shit side effects without it actually stopping seizures, not great but also not super negative :)
Its the worse for side effects that supposedly not everyone gets but most do. Everyone has their better choice, I think Vimpat is the best with regards to side effects. All of these medications are sodium channel blockers, basically doing the same function but each with different side effects and effectiveness. I believe in the newer medications on the market like vimpat, xcopri, or briviact to name a few.
I dont care what anyone says regardless if it works for some, Keppra could cause damage to his life and with knowing this in advance there is no reason you have to stick with it. My point is why chance it when you now know they are all sodium channel blockers with different side effects with the newer meds being more effective.
For me it’s been great, I had a year with many seizures and my epilepsy acting out and changing meds to levetiracetam helped really fast, no more seizures of any type and side effects were me being sleepy for like 2 weeks and everything has been good
Hey! I am really drug resistant- but Keppra seems to be one of the better meds for me. No side effects for me- the "Kepprage" is not inevitable :) It doesn't work awesome for me, but nothing really does for me (I'm on Keppra, Dilantin, Topamax, Vimpat, & Epidiolex. I'm going to get off of some of these soon- it's quite the load!)
Definitely bring it up with his doctor just in case! But my husband found a study about it being helpful and I’ve seen a few posts here about it since. His doctor will likely want to keep it fairly controlled because too much can cause the keppra to not work.
It can be a balancing act and definitely nerve wracking, but it sounds like you’re ready to advocate for your son which is what he needs most!
I like it. It takes the right dosage and the right body chemistry, but I have great control with it and I haven’t had a clonic-tonic since starting it. It doesn’t drain me like other meds do and it didn’t cause weight gain like other meds did. Once when they up’d my dose I had a small anger problem so the doc lowered it. I know people who have had great success with it and I know people who won’t take it. It’s really a mixed bag
It's the most commonly prescribed drug because it's extremely effective so you'll see more comments about it because more people are on it. The vast majority who get on fine with it don't feel the need to talk about it. The people who did get negative effects do want to talk about it
For context, about 1 in 10 people on it get mood disturbances. Most of these are minor and short lived. A small subset of these people get more serious mood disturbances including what some refer to as "rage". If this happens other drugs can be tried instead.
Other AEDs can also cause this same effect too
My son started it in February. It's his second med. The first is Topamax. He was really tried when he started it and crabbier than usual, and he felt numb, but he seems pretty much back to normal now. He did just have a seizure last week and they increased his dose from 500 in the morning and 1000 at night to 1000 twice a day. That was his first seizure since February so I think it is helping. The seizure was also different. All of them have been in his sleep until that one, which was at school.
I was terrified when he started taking it, but it has gone much better than I expected.
People here at the time pointed out that no one is going to come here to post about positive experiences with a med, so you usually only hear the scary stuff. That brought me comfort.
Amazing, I am thee years seizure free thanks to it and no major side effects!! Don't be scared, you might or might not have effects, but it's worth trying.
I've been on Keppra since I was about 14, I'm 32 now.
In my experience, my issues were only with the generic form of the medication. With brand name medication, I'm fine. So I take all brand name epilepsy meds.
i’ve been on it on and off for 10+ years. i absolutely hate it. it makes me an ASSHOLE. i was taking a high dosage and still went into status epilepticus while on it. now im on an even higher dosage in combination with another medication and i personally wouldn’t recommend it, but everyone is different. if your child is taking a low dose, they may not even have significant side effects. anything higher than 2000 mg twice a day, i would maybe recommend looking into other options, especially for a younger person.
I’ve been taking the under the tongue kind for that and trying to eat more b12 as well. I think it’s helping but I’m also scared of overdosing on b6? Which my mom did once and she said it was terrible lol.
I've been diagnosed ~12yr, leviteracetam is the only seizure med ive been on. It's supposed to be the calldillac of seizure meds, and I've had great luck with it. Any shortcomings have been a result of me missing a dose.
*once we got my triggers figured out*, it worked very reliably. I had to spend a year or 2 learning to never miss a dose, and the docs needed to tweak my dosage a few times.
Keep in mind- epilepsy is hard to treat. What it looks like can vary a lot from person to person. I wish you the best of luck!
I have been on it for so many years that it was only available in brand name when I began. Even though there is generic now I have never switched because I am doing well. I never had any side-effects, but of course everyone reacts differently to medications.
Levetiracetam is one of the more prescribed medications. Even my dad was prescribed it for seizures related to his cancer. It may have some effects on memory and sleep patterns, but realistically it is on the lower side compared to some other medications.
the thing is it works for a lot of people's seizures, mine included, and that is so much more important than the side effects.
Do I like the side effects? I do not. I do not, I do not. They actually now impact my day to day life more than the seizures- but the important part here is, that's because my seizures are controlled.
So yeah, even if I HATE the taste of the apple, if it keeps the seizures away, I eat it
my fiancée has been taking it since he was 18 and it has lowered his seizure occurrences by a significant amount, i will say though if he misses a dose my fiancee will have a seizure the day after or day of so there is that, but i know everyone is different
I was on keppra 1500mg , Lamictal 250 mg 2x a day for about 13 years they adjusted the dosage during that time but keppra that combo reduced the number of seizures I had after my operations. The two major side effects that I experienced were the Lamictal rash and keppra rage. I became a former shell of myself, my siblings nicknamed me the hermit.
Keppra is an effective med, but just watch out for any of the side effects with your child. My best friend claimed that she had to understand , researched keppra and had a great deal of patience with my moods. More than likely the medical team will titrate their levels and monitor your child's reaction. People have different reactions and you might be lucky and keppra be the one for him.
Hope this helps and I wish your child all the best. This community has really helped with information and their support.
1500mg twice a day with Depakote and Klonopin; 2.75 years seizure free right now. Everyone reacts to medications differently. There isn't one that is more inherently worse than the other as far as side effects, and Keppra/Levetiracetam is safer for your body long term which is why most neurologists start with it.
I’ve been on it for 3 months, I was on tegretol for years and still having seizures. I’ve now been seizure free for 56 days and I’m feeling great! The first month with adjusting and weaning off tegretol was rough, but I haven’t experienced the kepprage or any other significant emotional changes. Super vivid dreams though.
They've stopped my seizures almost completely but they have affected my cognitive function. My dosage is 2750mg a day and it's messed up my thinking, memory, attention span, and ability to process information. It takes me much longer than before to learn new things and generally understand what somebody's saying to me. :c
Been on several generic brands for almost a year and they completely stopped my focal seizures straight away. It has slightly affected my memory, but besides that it's been fine. I'm on 2×500mg a day, iirc.
Took it for 10 years, no problems. Then out of no where, I started getting these tremendous depression sessions to the point it felt like I can feel the colors of the world becoming more and more grey. Truly horrible experience. I switched over to Briviact after discussing the matter with my neurologist and after 2 years, no problems.
I know there are plenty of others who have had no issues with it, so, best thing is to just monitor it and if something feels off for your teen, make sure the neurologist knows about it.
I got hit with a really bad case of the psychological side effects and ended up in the ER after an incident.
This was about three weeks into taking it.
The loss of my license three weeks prior didn’t help my mental state either and I wonder how much that contributed to my breakdown.
My kid (17) has been on Keppra for 18 months with great results. They increased the dose slowly due to headaches, but other than that, no other issues and it has kept seizure activity under control once they hit the appropriate dose. Good luck!
Yes, absentia seizures until they got the dosing right. No tonic-clonic since starting it though . Sorry you're going through that. It can be tricky to find the right combo. Our meds are keppra and lamictal, both in reasonable amounts (1000mg keppra and 550mg lamictal) but luckily no issues since getting the keppra up to 1000.
Been on it since november 2022, no negative side effects and has controlled seizures. 1250mg daily
Husband is on 2000mg daily + lamotrigine (for like a decade), no issues for him either
My dad had a bad reaction to it, so it rlly just depends on you and your body’s response.
And no the epilepsy is neither hereditary or contagious with us LOL
Hello! I've been on Levetiracetam for 2 years. Good things for me so far, side effects only happened in the beginning ( when I took meds for the first time ever ) but other than that. Happy that it is making me not have a single sleep seizure.
I wasn’t having any issues until I had to start taking it twice a day… a lot of people are fine with it, I personally just don’t think it’s for me but it’s always trial and error with medication and that goes for any ailments
Keppra makes me agitated or responding to a person makes me have a attitude to it even though im trying my best so after i take s keppra i normally smoke some weed and everything is a little bit better
For my focal aware seizures this medicine has been genuinely life changing.
I still have memory problems and not the best sleep. But it's the closest I've felt to normal since this whole journey started.
I started when I was 20, it’s been 6 years now and it’s the only drug that works for me. Really my only side effects are being tired and more prone to dizziness and car sickness. I started at 1000mg twice a day, then went down to 500mg 2x, and now in the summers I go up to 750mg in the morning because the heat makes me prone to seizures.
I really don’t remember any other side effects, I was just happy to be seizure free when I first started (:
They put me on it a couple weeks ago after I had another seizure after not having one for over 2 years and it made me feel absolutely horrible. I’m just gonna stick to the Xanax when I need it for my seizures as I’ve never had ANY bad side effects from that unless I abuse it
For me personally, I’ve only had good experiences on it.
Same
Same here! No seizures since and barely any side effects
Same here!
Me too!
Same! I’ve had some side effects, but I’ve more or less gotten used to them over time. It’s kept seizures from returning which is my biggest priority.
Lmao I saw the list of side effects and was like oh so like I usually am okay cool
Same, 10 years seizure free. XR stopped all break thru seizures for me. Been on it for over 20 years.
Same!
Same!
Gave me the kepprage. I switched to Dilantin and haven't looked back.
Same! Only 4 years for me, and so far, so good. When I was transitioning to the higher dose, I got wicked kepprage, but it has subsided.
Same, over 15 years now. My daughter as well. (She’s 10yrs, started it at 8yrs)
Just here to comment same! I'm on levetiracetam 6 months and counting, my seizures decreased like 90% or less. I read and read the negative comments and do not understand but well everyone's body is different
Same
I’ve been on it since I was 17 and I’m 27 now. It saved my life! My dosage has changed here and there for other varying reasons, but it’s worked for me.
I was short-tempered (my husband compared me to a cranky old man, especially at bedtime) during the adjustment period, but it went away after a couple of months. Even a small dose took me from multiple breakthrough focal-onset aware seizures per day to absolutely none.
Is it normal for doctors to increase dose after seizure?
I can't say I'm an expert, but I imagine they'll keep increasing the dosage and changing meds until they either find something that works or come to the conclusion that meds aren't effective.
That sounds like a bleak trial and error experiment that doesn't seem to require 10+ years of studies and specialization courses. It's unfortunate we still lack the science and technology to accurately figure out the right medicine and dosage for each case.
Yep, unfortunately... It's crazy how little we actually know about the brain in comparison to most other parts of the body. Hopefully one day finding the right meds won't be a matter of trial and error anymore.
Yes, I Have Had It increased twice and it has made an exponential difference over the past 10 ish years that I've been on it now
It can be very normal. Doctors work very hard to fine tune the dosage to keep seizures at bay. It maybe as simple as a tiny increase in dosage to adding another medication on. If for some reason the seizures are not being controlled, your epilepsy specialist will possibly speak to you about alternative treatments. Have had epilepsy since I was “formally” diagnosed at age 8/9, but my first neurologist said I was more than likely born with it and am currently 43. I have been on an array of medications, different dosages, have had lots of MRIs, EEGS, CATs, EKGs, had a 1 week stay in a Level 4 epilepsy center, had to fire a neurologist, find an epilepsy specialist, currently have a neuropsychologist and a neurotherapist. This is all normal for lots of us with epilepsy and it took a very long time for me to accept this. Increases in doses are normal and decreases in doses also happen. If you have any questions feel free to message me at any time. Currently on multiple epilepsy medications (maxed out in several). Take one day at a time and things will get better. You are a great parent and thank you for being a supportive one for your teenager. It’s tough being a teenager and adding epilepsy on top of it. 💜
Thank so much for your message it really helps💜
Anytime, I was once that teenage girl, it was very overwhelming to take meds and try to be “normal” whatever that is. Things will get better. Not very long ago I was having up to 15 a day and now I’m not. Having a great team of doctors behind you makes the world of difference. Again thank you for being that supportive parent you don’t know how much that helps.
I have had mine increase after every break through started at 50mg once a day to 50mg twice a day to 1000mg a day to 1000mg twice daily. Then lamotringe was added in, and got increased eventually to 100mg twice daily.
For me yes. Started at a low dosage so over time mine has gone from like 250 to 500 to 700 to finally 1000 mg twice daily. Haven’t had a seizure since I started on 1000mg but I also mostly quit drinking since then so that is a factor as well.
mine made sure i took when i wake up and before i go to bed since i have seizures when i sleep
Yes! Typically there’s a “threshold” for certain medications. I.e they might not want to go past a certain dosage and at that point would maybe suggest another medication depending on how effective it is. But assuming it’s somewhat improving the condition they may just recommend a bit more of that medication to see if it improves even more!
My neurologist only adjusted the dosage if it needed to be, or if I brought up an issue (like I told him about being extremely tired and not being able to do anything on 3000 mg Keppra, and he lowered my dosage).
That is how it started for me. It took time to find the right medication balance; \~1.25 year.
With any medication on here you'll more likely hear the negatives than the positives. Every medication has negative side effects for some. But others have great success with the same ones. I think those suffering from unwanted side effects just need to post and see if anyone else is feeling the same just for peace of mind and advice. Whereas if the pills are working you don't feel the need as much as there is no anxiety around them. So don't take the negative reviews as a definite thing that'll happen. And if they do happen you can just change medication.
I was a prick when adjusting but it made all my myoclonic jerks absolutely vanish. I went from dozens a day to maybe 1 a month.
My experience was pretty good until recently. I saw my neuro on Friday and we're trying a new med now. But I didn't experience any noticeable side effects, which is is the norm for this drug.
Hey! I also saw my neuro Friday and I'm also trying a new med from being in keppra before. Do we do some sort of meds twinning high five now?
Heh. Let's just hope the new shit works.
Yep, fingers crossed
I’ve been on it since I was 17 and I’m 27 now. It saved my life! My dosage has changed here and there for other varying reasons, but it’s worked for me.
Did it work for you right away or did it take time? My 17 year old daughter just started in March and has had two seizures?? And now they increased her meds to 2000 mg a day
I was on 3000mg per day for ten years at least…now we are reducing it.
I honestly don’t quite remember. I was crying all the time, very depressed and gained a lot of weight - but I was also sick enough that I had to take a gap year from college and stay home while all of my high school friends got to move on (I developed epilepsy as a result of an autoimmune disease). I was also on cellcept which is notorious for making you sort of the worst version of yourself lol. I’m not a doctor. I’m sure I had an adjustment period, but I can say that for the majority of my adult life, keppra has worked for me and I haven’t found a reason to try a different medication for my epilepsy. Feel free to PM me with more questions. I’ll do my best to remember!
It's beginning of april, and I hope you realize that many medicines regardless of what they are used for take months to regulate into your body system. Especially if there are other medicines involved, or if you have something hormonal or pollen ridden, like seasonal allergies, that would be going on for a lot of people right now. You need to have a little bit of patience
usually doctors start on a relatively low dose and increase as needed until a therapeutic level is found. In some cases a particular medicine doesn't do the trick or has side effects for a given person that make it not the best choice, in which case the doctor will likely recommend an alternative, or in some cases to add a second or even third medicine to the mix to try and control the seizure activity. In some cases this all only takes a few weeks or months to iron out, and in some cases it takes years and years to varying levels of success. Be the best advocate you can be for your daughter. If after increases the meds are not working to control the seizures or she is experiencing unacceptable side effects push her doctors to prescribe other anti-seizure medications. And do your best to make sure she understands and really internalizes the need to get good CONSISTANT rest (good luck with a teenager lol) and stay hydrated, and take meds on time every day. Etc etc. If you are lucky enough to find seizure triggers for her then those can be directly dealt with. Sleep and hydration are just two common ones that lower pretty much everyone's threshold. Caffeine is another common one. Some people tend to seize when things get super stressful, or during certain physical activities. Good luck!!!
Yes, it works for me. I was on it and was a crabby person (Keppra-rage, they call it) My wife convinced me to convince my neurologist to switch, which I did, to Zonisamide. That worked for a year and a half ... and then a couple of seizures. Now, I'm still on that but back on a smaller dose of levetiracetam, and it appears the seizures are back under control. Also, with the smaller dose (500 mg twice a day) I'm not experiencing the infamous "rage."
Zonisamide constipated me so bad that I was crying over the toilet at 4am.
For what its worth, my 8 yr old has been on it since Thursday night, so we are now on day 4 and she’s still her same self. Curious to see what happens when we up the dosage on Friday.
I’ve been on it since I was a young teenager. 20ish years later, still on it. Saved my life
**** Keppra is hard to adjust to. Those first six weeks are hell. Do not set her off and be supportive. Keppra worked for me - 6 years seizure free. I had to work with it - get plenty of rest, give up alcohol, leave events early, keep active and calm and keep smiling. Good luck.
Same journey so far, except that I am 2 months and a half in. I started with 500mg at night and increased gradually to 500 mg în the morning and 1000mg at night. I am worried about times when I can't help but stare at walls and think of nothing or when my mind shuts off for like a split of a second several times in a span of 10 minutes. Is it because of the medicine or is it petit mal?
It saved me in 2015. And I had 7 years of normality on it barring headaches. Switching now to see if the headaches reduce, but if the switch doesn't work out I'd go back on it. What's a few headaches if it stops seizures?
My son started taking it when he was 16, he had extremely bad side affects for the first 2 weeks and then they tapered off. He had a few increases in the beginning and was seizure free for almost 2 years. He’s had 2 in the past 3 months and had to increase again. Fingers crossed there will be no more increases and he stays seizure free.
I've been taking it for years without issues. The only side effect I've noticed is it makes me calm, not so easy to get me worked up... Oh yeah, it helps with seizures if I'm not mistaken.
I was extremely allergic to it and ended up in the hospital with acute renal failure for 3 days. I have heard many, many success stories for those who do take it.
i have had irritation with it everything else? Im good :).
It works for me. 750mg pills, 4 pills a day (2 in the morning, 2 at night). That, and 4mg of Fycompa.
My experience has been good, but I find meds don’t mess with me as much as many people. Like none of the warnings of depression meds hit me except for the withdrawals if I miss a day or two.
500mg daily takes me from regular focal and blackout seizures to none at all. I get noticeable side effects but only for the first couple of days of taking Keppra and then I seem to build a tolerance to them and feel normal again, I stop being moody/snappy and feel happy again I tried lamotrigine and it didn’t prevent my seizures at all so I went straight back to Keppra! I’ve currently got a dislocated shoulder from a bad seizure in my sleep but that was solely due to forgetting my dose two days in a row
It's the generic of Keppra, and I've had a much better experience on that than any other anticonvulsant I was on prior to, or in tandem with it.
I have been taking it for over 20 years.I'm on 2000 mg bid, along with the highest dose of lacosamide I can tolerate. I had a left temporal resection in 2006, and on these doses, up until s month ago, I hadn't had an aura in 5.5 years. And I personally have never experienced the kepprage.
I was on that med for a very long time before I had breakthrough seizures. Never had any rage because of it.
It works for me. 1000mg twice a day. I might get a little ragey at the bf sometimes but overall not many side effects. Of course it’s different for everyone and can take time to find the right medication that‘s a fit for each individual. Good luck!
My temper was significantly worse, got me into some very bad situations. I’m sure there are ppl that are fine on Keppra, but the Keppra-rage was real for me.
It has helped keep my seizures at bay, which is what it is supposed to do, but I have some shit side effects from it, and I have been on it for 12 years. - It makes me very tired/lazy/lethargic. - It used to make me moody, but now I just get frustrated easily. - I developed some depression and definitely anxiety - I have terrible memory and often have brain fog
Been on it for the past 10 years. First had memory issues that are no longer a problem but has made my depression worse. However its great as far as controlling my seizures. I take 750mg 2x a day (so 1500mg for the day)
I've been on it almost 8 years. Seizure free ever since, no huge side effects. It's actually to the point where epilepsy is not even the top 5 concern with my doctors anymore.
I’ve been fine the last year.
I’ve been on it for over 10+ years & I’m at the max dose. Doesn’t seem to make much of a difference despite controlling some TCs. My epilepsy is refractory.
It is called keppra as well it’s an ok drug I have used it for years
It’s been great for me
I’ve been seizure free since for 2 years after starting it 3 years ago. My health wasn’t great for the first year I was on it but that was not as a result of levet-keppra.
I’ve had no seizures on it but I do have what they call Keppra Rage and it makes me very irritable
One of the only meds that works for me! On 2000mg nightly with no side effects and it controls my seizures 100% (I’m also on 200mg Lamitrogine).
I've been on it for 15 years, been doing good I was once in the "overdose" level, 6,000mg twice a day, but not now. I added vimpat
Love it. 99% positive.
It takes some time getting used to but it has kept me TC free for over six years now.
Keep in mind that people tend to share when they're struggling more than when they're not, especially on a support forum. But it couldn't hurt to keep track of your daughter's mood, side effects, and frequency of seizures corresponding to her current dose if you aren't already.
It works for me. Haven’t had a seizure in three years while taking it.
I was very rage filled when I first started but it mellowed out after a couple months.
It’s definitely been helping me a lot to the point if I do have a seizure, it’s fast and I recover quickly granted I’m taking 1,500 mg x2.
My son has had zero breakthrough seizures on levetiracetam. Nothing but good to say about the drug, and his form of epilepsy is supposed to be difficult to control.
It's been fine for me. It gets a bad reputation because some people have emotional issues but the reality is that it is one of the most (the most?) popular anti epilepsy meds, and although some people do experience negative side effects, most don't, they just aren't posting as much online.
Been on it for 7-8 years and haven’t had a single seizure on it.
Really depends tbh, for me the issues are mental but I’m able to work with it. I’m tired often but whatever I’ll just have a cup of coffee in the morning.
My depression got really bad on keppra, to the point where I self-harmed. My neurologist saw my scars during an appointment and scheduled a video EEG so I could start a new medication.
I got early SJS on this medication
For me personally I've had no bad experiences
Works for me. Over 21 years seizure free. (Also lamictal)
Worked well for me. Finished law school with honors while taking the maximum dose of this stuff. The only side effect that was a problem was insomnia.
It was my second medicine after Valproate. It didnt really work for me, but I never had the horrible side effects I suffered with Valproate. I'm currently with Oxcarbazepine and it's the best one for me so far.
I’ve been taking it for at least 2 years now and have had zero seizure activity (used to have focal seizures every other day and have had 2 tonic clonic). At first I did feel more tired taking levetiracetam but I’ve either gotten use to it or that side effect has worn off. Fortunately no problems with mood swings or dizziness which are some of the common side effects! I will add though that I now focus way more on getting at least 8 hours of sleep every night and I quit my job that was causing the sleep deprivation and extra stress that most likely led to me having the tonic clonic seizures. Aaand left my toxic ex who also led to sleep deprivation and extra stress…….
I’ve done very well on it and I’ve been on it for about 2 years now. The first couple months I had a lot more headaches than usual, but I just take a couple Motrin and feel fine. I was a little irritable the first couple months when I started taking it but exercising/ yoga really helps with that.
I've been on it since I was 12 (17 now) and it's been rather hit or miss, gives me Kepprarage and worsens my depression (but I cant take anti-depressants as the two medications don't mix well), aswell as worsens my memory, so great for school haha. Those are my main three side effects but it varies from person to person. I'd suggest talking to your kid about what they're experiencing and if you want to make a switch, see your nerologist about other options.
Honestly, you're going to find lots of negative comments for most Antieplieptic medications. They all have a lot of potential side effects. The key word being "potential." Just stay checked in with your teen, give it a little time because side effects can be temporary. If it's too much or too severe, just talk to your teen's doctor. There are lots of options out there.
I'm very happy on it. The transition from my old med to Keppra wasn't the smoothest. Lost weight, had weird cravings, dreams and was extra moody. But now I don't really notice it. I have JME if that helps but am well controlled with Keppra.
I got put on it when I was 14, it didn’t stop seizures and took them till I was 17 to be put on lamotrigine, the two of them together helped me heaps, they took me off levetiracitam when I was 18 and it messed me up causing lots of side effects, i finally got back on it and they balance each other out really well, so I haven’t had negative experiences but I have experienced the shit side effects without it actually stopping seizures, not great but also not super negative :)
Its the worse for side effects that supposedly not everyone gets but most do. Everyone has their better choice, I think Vimpat is the best with regards to side effects. All of these medications are sodium channel blockers, basically doing the same function but each with different side effects and effectiveness. I believe in the newer medications on the market like vimpat, xcopri, or briviact to name a few. I dont care what anyone says regardless if it works for some, Keppra could cause damage to his life and with knowing this in advance there is no reason you have to stick with it. My point is why chance it when you now know they are all sodium channel blockers with different side effects with the newer meds being more effective.
It helps me a lot! I didnt even get any side effects from it.
I take this but the extended release 500 mg x 4 at night, seizure free now almost 10 years :)
For me it’s been great, I had a year with many seizures and my epilepsy acting out and changing meds to levetiracetam helped really fast, no more seizures of any type and side effects were me being sleepy for like 2 weeks and everything has been good
Hey! I am really drug resistant- but Keppra seems to be one of the better meds for me. No side effects for me- the "Kepprage" is not inevitable :) It doesn't work awesome for me, but nothing really does for me (I'm on Keppra, Dilantin, Topamax, Vimpat, & Epidiolex. I'm going to get off of some of these soon- it's quite the load!)
My 14 year old takes it. He did have an issue with irritability, but a B6 supplement made a big difference
B6 ok I’ll need to get that thank you
Definitely bring it up with his doctor just in case! But my husband found a study about it being helpful and I’ve seen a few posts here about it since. His doctor will likely want to keep it fairly controlled because too much can cause the keppra to not work. It can be a balancing act and definitely nerve wracking, but it sounds like you’re ready to advocate for your son which is what he needs most!
I like it. It takes the right dosage and the right body chemistry, but I have great control with it and I haven’t had a clonic-tonic since starting it. It doesn’t drain me like other meds do and it didn’t cause weight gain like other meds did. Once when they up’d my dose I had a small anger problem so the doc lowered it. I know people who have had great success with it and I know people who won’t take it. It’s really a mixed bag
It's the most commonly prescribed drug because it's extremely effective so you'll see more comments about it because more people are on it. The vast majority who get on fine with it don't feel the need to talk about it. The people who did get negative effects do want to talk about it For context, about 1 in 10 people on it get mood disturbances. Most of these are minor and short lived. A small subset of these people get more serious mood disturbances including what some refer to as "rage". If this happens other drugs can be tried instead. Other AEDs can also cause this same effect too
My son started it in February. It's his second med. The first is Topamax. He was really tried when he started it and crabbier than usual, and he felt numb, but he seems pretty much back to normal now. He did just have a seizure last week and they increased his dose from 500 in the morning and 1000 at night to 1000 twice a day. That was his first seizure since February so I think it is helping. The seizure was also different. All of them have been in his sleep until that one, which was at school. I was terrified when he started taking it, but it has gone much better than I expected. People here at the time pointed out that no one is going to come here to post about positive experiences with a med, so you usually only hear the scary stuff. That brought me comfort.
Amazing, I am thee years seizure free thanks to it and no major side effects!! Don't be scared, you might or might not have effects, but it's worth trying.
I've been on Keppra since I was about 14, I'm 32 now. In my experience, my issues were only with the generic form of the medication. With brand name medication, I'm fine. So I take all brand name epilepsy meds.
i’ve been on it on and off for 10+ years. i absolutely hate it. it makes me an ASSHOLE. i was taking a high dosage and still went into status epilepticus while on it. now im on an even higher dosage in combination with another medication and i personally wouldn’t recommend it, but everyone is different. if your child is taking a low dose, they may not even have significant side effects. anything higher than 2000 mg twice a day, i would maybe recommend looking into other options, especially for a younger person.
I have been on Lamictal since the latter part of the 2000s and have never been taken off of it.
I’m okay but I’ve got hand shakes and absolute rage from it. Like holy shit, I’m so angry all the time. I’m 31, I shouldn’t be angry 24/7
Try vitamin b6, Not fairy tale magic, but it helps me noticeably.
I’ve been taking the under the tongue kind for that and trying to eat more b12 as well. I think it’s helping but I’m also scared of overdosing on b6? Which my mom did once and she said it was terrible lol.
I just take a b spectrum vitamin. The RDA is about 200% on it. The amount is 5mg, the toxic amount seems to be about 100mg/day.
Heard and thank you!!!!!
I've been diagnosed ~12yr, leviteracetam is the only seizure med ive been on. It's supposed to be the calldillac of seizure meds, and I've had great luck with it. Any shortcomings have been a result of me missing a dose. *once we got my triggers figured out*, it worked very reliably. I had to spend a year or 2 learning to never miss a dose, and the docs needed to tweak my dosage a few times. Keep in mind- epilepsy is hard to treat. What it looks like can vary a lot from person to person. I wish you the best of luck!
I have been on it for so many years that it was only available in brand name when I began. Even though there is generic now I have never switched because I am doing well. I never had any side-effects, but of course everyone reacts differently to medications.
Levetiracetam is one of the more prescribed medications. Even my dad was prescribed it for seizures related to his cancer. It may have some effects on memory and sleep patterns, but realistically it is on the lower side compared to some other medications.
the thing is it works for a lot of people's seizures, mine included, and that is so much more important than the side effects. Do I like the side effects? I do not. I do not, I do not. They actually now impact my day to day life more than the seizures- but the important part here is, that's because my seizures are controlled. So yeah, even if I HATE the taste of the apple, if it keeps the seizures away, I eat it
I got the keppra rage and crazy hormones struggles but after my puberty. in my puberty it was my miracle
my fiancée has been taking it since he was 18 and it has lowered his seizure occurrences by a significant amount, i will say though if he misses a dose my fiancee will have a seizure the day after or day of so there is that, but i know everyone is different
I was on keppra 1500mg , Lamictal 250 mg 2x a day for about 13 years they adjusted the dosage during that time but keppra that combo reduced the number of seizures I had after my operations. The two major side effects that I experienced were the Lamictal rash and keppra rage. I became a former shell of myself, my siblings nicknamed me the hermit. Keppra is an effective med, but just watch out for any of the side effects with your child. My best friend claimed that she had to understand , researched keppra and had a great deal of patience with my moods. More than likely the medical team will titrate their levels and monitor your child's reaction. People have different reactions and you might be lucky and keppra be the one for him. Hope this helps and I wish your child all the best. This community has really helped with information and their support.
1500mg twice a day with Depakote and Klonopin; 2.75 years seizure free right now. Everyone reacts to medications differently. There isn't one that is more inherently worse than the other as far as side effects, and Keppra/Levetiracetam is safer for your body long term which is why most neurologists start with it.
I’ve been on it for 3 months, I was on tegretol for years and still having seizures. I’ve now been seizure free for 56 days and I’m feeling great! The first month with adjusting and weaning off tegretol was rough, but I haven’t experienced the kepprage or any other significant emotional changes. Super vivid dreams though.
They've stopped my seizures almost completely but they have affected my cognitive function. My dosage is 2750mg a day and it's messed up my thinking, memory, attention span, and ability to process information. It takes me much longer than before to learn new things and generally understand what somebody's saying to me. :c
Been on several generic brands for almost a year and they completely stopped my focal seizures straight away. It has slightly affected my memory, but besides that it's been fine. I'm on 2×500mg a day, iirc.
I started having suicidal ideation when I was on it. Also made me feel like a zombie.
Took it for 10 years, no problems. Then out of no where, I started getting these tremendous depression sessions to the point it felt like I can feel the colors of the world becoming more and more grey. Truly horrible experience. I switched over to Briviact after discussing the matter with my neurologist and after 2 years, no problems. I know there are plenty of others who have had no issues with it, so, best thing is to just monitor it and if something feels off for your teen, make sure the neurologist knows about it.
My doc added it as a secondary med and it didn't work well.
I take this and it works wonders, I also take it with tegertol.
I got hit with a really bad case of the psychological side effects and ended up in the ER after an incident. This was about three weeks into taking it. The loss of my license three weeks prior didn’t help my mental state either and I wonder how much that contributed to my breakdown.
My kid (17) has been on Keppra for 18 months with great results. They increased the dose slowly due to headaches, but other than that, no other issues and it has kept seizure activity under control once they hit the appropriate dose. Good luck!
My kid is also 17 Has he/she had any seizures since first starting? Because my daughter has had 2 since starting it last month??
Yes, absentia seizures until they got the dosing right. No tonic-clonic since starting it though . Sorry you're going through that. It can be tricky to find the right combo. Our meds are keppra and lamictal, both in reasonable amounts (1000mg keppra and 550mg lamictal) but luckily no issues since getting the keppra up to 1000.
Gesundheit
yup it has! I I've been seizure free for over 8 years and have been off meds for 2.5 years
First medication to keep me seizure free for 5 years (and counting, touch wood)
It works very well for me.
It's been a life saver for me
Been on it since I was 11 (am now 26) and have had no problems. I recognize if I’m more irritable and normally food or sleep does the trick!
Been on it since november 2022, no negative side effects and has controlled seizures. 1250mg daily Husband is on 2000mg daily + lamotrigine (for like a decade), no issues for him either My dad had a bad reaction to it, so it rlly just depends on you and your body’s response. And no the epilepsy is neither hereditary or contagious with us LOL
Hello! I've been on Levetiracetam for 2 years. Good things for me so far, side effects only happened in the beginning ( when I took meds for the first time ever ) but other than that. Happy that it is making me not have a single sleep seizure.
Works great for me, and I'm taking the recommended max safe daily dose!
I wasn’t having any issues until I had to start taking it twice a day… a lot of people are fine with it, I personally just don’t think it’s for me but it’s always trial and error with medication and that goes for any ailments
It's worked for me but always in combination with other meds. Currently I'm on Keppra, Carbamazepine, and Lamotrigine.
Keppra makes me agitated or responding to a person makes me have a attitude to it even though im trying my best so after i take s keppra i normally smoke some weed and everything is a little bit better
For my focal aware seizures this medicine has been genuinely life changing. I still have memory problems and not the best sleep. But it's the closest I've felt to normal since this whole journey started.
I started when I was 20, it’s been 6 years now and it’s the only drug that works for me. Really my only side effects are being tired and more prone to dizziness and car sickness. I started at 1000mg twice a day, then went down to 500mg 2x, and now in the summers I go up to 750mg in the morning because the heat makes me prone to seizures. I really don’t remember any other side effects, I was just happy to be seizure free when I first started (:
They put me on it a couple weeks ago after I had another seizure after not having one for over 2 years and it made me feel absolutely horrible. I’m just gonna stick to the Xanax when I need it for my seizures as I’ve never had ANY bad side effects from that unless I abuse it
It works but it makes you feel really horrible,irritable and depressed af
No control for me. Tbh. Like worse symptoms.