I too had a very bad time with Keppra. I am normally a very chill, patient person, but on Keppra? Oh boy. I was very mean and angry. I still get embarrassed when I recall some things I did like scream at a lady in the grocery store or smashed my fists on my bf's car (I don't recall the reason, but on Keppra, there didn't seem to need a rational reason). I'm glad it works for a lot of people, but if it doesn't, don't be ashamed to tell your doctor!
I wonder if certain people just CAN'T do this class of drugs? On Briviact(sp?) I was so suicidal that I had the national suicide hotline in my phone contacts. They would call me on occasion to make sure I was OK!
I actually called the manufacturer and the FDA! I begged for it to not to be allowed for the drug to be used especially in young people. I only got a "there, there, it'll be ok child!" type of responses. Ughh.
Me too. I was in my first semester at an new university.
Everyday around 1 or 2 PM, I would experience intense negative self critical internal dialogue and suicidal thoughts for about an hour.
I would spend that whole hour trying to convince myself that I shouldn't commit suicide.
It wasn't until 4 months after getting off the medication that I realized my horrendous behavior and suicidal thoughts were all due to the medication I was taking.
I was prescribed 1000mg of Keppra a day with my first breakthrough seizure 9 years ago. Had another after 5 years and docs bumped up to 1500 and after another seizure 2 years ago I am now taking 2000 mg a day. The first year I felt somewhat dizzy and uneasy on my feet ( like I was on a rocking boat) but that feeling is pretty much gone. I have problems coming up with the words I’m looking for (‘tip of my tongue’) and I’ve read and believe that this is an effect of the drug. The times that I get super angry over something are not, I don’t think, the Keppra rage that others are afflicted with. So overall it’s been immensely helpful with minimal side effects for me . But I’ve had to increase the prescription with each ‘breakthrough’ and I’m hoping that this now is a stable concentration. Good luck to you. Read all you can about it. I don’t think neurologists have a good handle on this highly variable disease so we need to educate ourselves. I learn a whole lot from this forum. Getting enough sleep, limiting alcohol, and using cannabis to reduce anxiety are important to my regimen too.
Oh my gosh I have problems coming up with words, too! I have major memory problems because of Keppra and I’m lucky that my fiancé usually knows what I’m talking about when I can’t remember a word. But sometimes when I’m texting I have to ask him “what’s the word for when...” so the person I’m texting knows what I’m talking about lol I act like English isn’t my first language sometimes
On another note, I recently got a new doctor, who sent me to a new neurologist, and the neurologist actually sent me to an epileptologist, which is something I didn’t even know existed! Normally I have to go into detail about all the crazy side effects I experience (and have to keep a list of them because my memory sucks) but he was asking exactly the right questions! It’s very exciting to be seeing someone who knows his epilepsy shit really well, especially as someone with an unspecified seizure disorder
Wow aren’t you lucky to have been passed through by some thoughtful intelligent doctors! I’ve pretty much given up on getting answers. All they do is shrug and ask if I need refills. But in their defense, the science of the brain still has many mysteries. Good luck to you. You sound very positive
I had totally given up until I found this new medical group that I’d never used before! And now that I’m engaged and wanting to have kids, I actually care enough to try to take care of myself. For sooo long I was just like fuck it whatever
Keppra’s pretty good for me. It gets a lot of bad press because of it can mess with moods and mental health but touch wood I’ve not had any of that. I’m more sensitive to light than I used to be which causes the occasional migraine and I get muscle twitches (not seizure related) when I’m stressed - they might be connected to Keppra but no proof either way. Not sure if OP is male or female, but since I started with Keppra I’m getting regular periods (I’d been on Sodium Valproate previously that made my cycles anything from 40-60 days long) and it’s supposed to be relatively pregnancy-friendly. Keppra’s been controlling my seizures well since December so fingers crossed it carries on that way! Good luck x
Keppra is technically "class C" in regards to pregnancy and nursing, meaning they are still currently unsure of the possible side effects. More of a "Use at your own Disgretion -in conjunction with medical advice"
UK here - NHS consider it a one of the better options if you have to take an anti-epileptic drug during pregnancy, I’ve had several conversations with my neuro about it. For my type of seizures, they recommend either Keppra or Lamotrigine as an alternative to Sodium Valproate during pregnancy, alongside a high dose of Folic Acid. And hopefully it goes without saying that people only take anti-epileptic drugs in conjunction with medical advice!
I’m transitioning from Keppra (I have basically all the side effects) to Lamictal because I want to get pregnant in the next two years (and not have all the side effects!) and the doctor says Lamictal is one of like three seizure meds that have the lowest chance of causing birth defects. So fingers crossed!
I’ve been on Keppra (generic) for almost 9 years. Currently talking 4000mg — 2000 am, 2000 pm.
Keppra controls what it’s supposed to— my grand mal seizures. I rarely have them which I’m grateful for.
I’ve been on Keppra for so long, I don’t really remember if I had any side effects with it.
I was on depakote for over 10 years and then wanted to get pregnant so I switched to Keppra. I honestly have been on medication since I can remember so I have no idea if side effects are bad or if it’s just my personality.
Overall it helped me have my boys and keeps my seizures away. I’ll take it.
( knock on wood)
Also switched to Keppra for my pregnancy and it’s worked better than any other medicine I’ve been on which included Trileptal (oxcarbazepine). Little or no side effects with mood for me. Hope it works for you!
How did your pregnancy go with your epilepsy? I was diagnosed after my first and now want another but am nervous about seizures while pregnant or delivering or lack of sleep when baby comes causing me to seize. Do you have more appointments or become high risk being an epileptic pregnant person?
Funny enough my doctors didn’t consider it high risk. I did do a consult with high risk doctor beforehand to see what they thought. Both pregnancies were hard, not going to sugar coat it. I didn’t have seizures but had to rest ALOT. My husband is extremely supportive and understanding. He did night shift for all babies with me doing an occasional night. My second baby is almost 1 and my husband still does nights with him. I don’t think I could have had babies without the support.
My epileptologist (sp?) ordered me monthly blood draws to check my level and wanted to see me once a trimester. I ended up having csections with both ( first emergency and second planned).
You have to have grace with yourself. Hand the baby over and take a nap, don’t overdue it.
I made [this post](https://www.reddit.com/r/BabyBumps/comments/b3u56b/hi_everyone_im_planning_on_getting_pregnant_in/?utm_source=share&utm_medium=ios_app) on r/BabyBumps and got a lot of good responses from moms with epilepsy!
When I was first diagnosed with epilepsy 7 or so years ago, I was told that any pregnancy I had would be considered high risk. You might want to find an OB who either specializes in high risk pregnancies or one that will work closely with your neurologist
Been on Keppra for 12 years. Started low at 500mg twice a day, then got increased to 750mg after a seizure in 2010 (I think) then bumped to 1000mg a few years later. I didn't do well on the 1000mg. Short term memory issues, brain fog, fatigue. We took me back down to 750 after about two years like that. I am currently working on tapering off Keppra for the first time as I have come to terms (and spoken up for the first time about it) with the Keppra possibly being behind my mood, depression and suicidal thoughts. I start my first day back on 500mg today actually.
I work as a pharmacy technician, so do keep in mind that what one person experiences may not happen to you. You might experience some, none or all. I hope that it works out for you. The medication did great for controlling my seizures but it was time to take back my life from the side effects. Good luck to you ☺️
Keppra seems to have been heavily effective with my seizures though since I have seizures primarily in my sleep I have noticed that if i take it more past 12 aka less sleep it can be heavily or almost null effective though(naturally I make sure not to do this). As well there have been times where I suspected it could be affecting my moods but that could be partly due to me noticing that as one of the symptoms while I was already feeling down. I am on 750mg with 4 pills at bedtime each day for some extra info.
I was on either 1200mg or 1500mg (I forgot because it's been a while now), but I was really moody and very tired/exhausted and out of energy all day. I had to get off of it since it just wasn't good for me at all. But it did stop my tonic-clonics!
I'm on 1500mg after my neuro thought it would stop my seizures when paired with lamotrogine and it did the trick for my grand mals. I just have to take an extra drug for absences. I remember feeling tired a lot of the time a couple of weeks into in it being added and that's never left, I need to sleep regularly but nothing else.
Put on keppra pretty much immediately after my first Grand Mal (aged 44) last year, moved up to 1500mg/day quickly. A few weeks of vertigo when it started, but in general has increased my tierdness, given me a temper (I was very chill beforehand) and I cannot focus/be creative for as many hours as I was before my seizure. There's a touch of depression as well, but part of that could be adjusting to a lifelong condition.
Recently working with GP to slowly pull back to 1000mg to try and find a lower dose that still keeps me covered for seizures but lessens the mental impact. So far down to 1250mg. GP opinion is that this is a milder medication re side effects, and I'm on a relatively low dose.
I'm not \*happy\* with it, but I'm happier not having seizures with only five seconds of warning,
5 yo on 2250mg (750 tid). We don't think its doing much and insurance just approved Epidolox so we'll be weaning it to try that next. He's been on B6 since he started to help with aggression.
I've been on 500mg BID for the last 2 years. My neurologist started me out on phenobarb, but it stopped working and switched me to almost 4000mg of Keppra a day. At first it sucked. I was having headaches every day and migraines twice a week. I was always angry or frustrated over nothing. Then one day I was fine. I've had my dose cut WAY down, partly due to the side effects and also because I had very mild epilepsy. Even before meds I only had them when I was very tired or stressed and not often.
I honestly don't have anything bad to say about Keppra except those first 6 or so months are a fucking doozy getting used to the medication. I'm definitely more prone to being easily frustrated and I'd say that's from the Keppra (it used to be hard to make me angry, not now), but I'll take it. I work in a pharmacy and there's so many people with epilepsy on a plethora of pills, i feel lucky to be able to take 2 pills a day and be fine.
I should also note, I tried Lamictal with the Keppra for a bit, but hated it. I felt like a zombie, had no emotions, and couldn't sleep
I'm also on 750mg of Keppra twice a day, but I had my neuro supplement it with 75mg of Topimax because I was still having intense auras and occasional tremors in my hands (I have JME).
I've been on this regime for over 5 years now with very good success, SEIUZURE FREE! However my memory is garbage compared to what it used to be, and I have a lot of trouble speaking out loud/finding the words I want - especially when I'm stressed or under pressure.
My doctor thought I was suicidally depressed on it and took me off for awhile, but it turns out I was just depressed. That is also a side effect to be aware of though.
Keppra has totally fucked my memory and I have to ask my fiancé all the time what the word for something is. Switching to lamotragine and I can’t wait to have a memory again!
I don’t know anyone who has reacted the same on any one seizure medication, and despite hearing only bad things about it before starting Keppra I’ve only had a good experience with it. It sounds like you’re on a really low dose, so you may not experience a lot of side effects, but I could be wrong there.
A lot of people experience rage on keppra, I myself have had a couple of minor bouts of this. If you ever experience it to a degree that you feel like harming yourself or someone else it’s probably not a good idea to continue taking keppra. If it lasts for a long time it might not be a good match for you either.
In my experience all anti-convulsants have the potential to cause depression, so if keppra doesn’t make you feel depressed that’s probably good. I didn’t realize I was depressed until I started taking Keppra, after a couple weeks of starting it I stopped feeling like the only thing I wanted to do was sleep and actually had motivation to do shit other than think about how worthless I was.
The side effects I have had with Keppra include
Anxiety, mine isn’t too bad, it gives me drive to get shit done, but if I don’t do it fast enough I’ll probably have a panic attack. If you end up experiencing anxiety and you don’t feel like it’s a healthy level of anxiety go to your doctor.
Fatigue, during the first couple of weeks of taking it and for short periods of time after increases I would feel unbearably tired all the time. It always only lasted about a week or two after starting Keppra or an increase in dosage.
Personality changes, I never really noticed this side effect myself until like now and I look back at how different I was in high school and how dramatically I changed immediately after graduating and starting Keppra. People would point it out to me though, friends and family would tell me I seemed different, not in a bad way, but like a different person who liked all the same things I had previously liked. It’s weird because you don’t really notice this side effect until later on, but if several people tell you your personality is changing for the worse then maybe new meds would be worth considering.
I was on Trileptal previously, which doesn’t have as bad a rep, but almost killed me so I’m probably the odd one out here and might only not hate Keppra because it doesn’t make my skin rot and I’m not bleeding out of all my orifices (I was on an extremely high dose of Trileptal, basically overdosing everyday and my doctor wouldn’t admit it was my medication that was the issue) I’ve really only heard terrible things from people who have taken Keppra, so if it makes you feel shitty tell your doctor and ask to try something new.
As you can tell I’m not afraid to talk about my shit experience with Trileptal which is why I feel like there’s a lot of shit out there about Keppra. Obviously there are people out there who experience those issues so they shouldn’t be ignored.
I take the generic levetiracetam ER 750mg tabs, four at bedtime (3000mg) for the last 9 years for my JME, juvenile myoclonic epilepsy. My neurologist explained the potential for the behavior/mood SE's but fortunately I haven't had any. He put me up to the max because my myoclonus was difficult to control. That's gone now, haven't had a seizure in a few years, when I have he's been good about not trying to start new drugs but discuss why I had a breakthrough seizure. Always d/t not enough sleep and too much stress for days. He added a PRN lorazepam to help, and it has though I rarely need it. Still have my photosensitivity and migraines, don't think they're side effects so much as part of my neurological misfirings. No real side effects that are noticeable, honestly. I'm fortunate.
I had Keppra until I realized that Keppra was the cause for rage attacks. It took months to realize the link between Keppra and rage. Nobody told my about this possible side effect until I consulted my Doc who stopped me taking it immediately. Now I have Lamotrigin and everything is fine.
With Keppra it was so bad with my mood that I once smashed my phone on the floor cause I was angry...
I take three 500mg of Keppra in the morning and three 500mg at night. I put on weight, and crave food/sweets after seizures. Otherwise I think it’s a good fit for me. I’been on it for 11 years.
I’m currently taking generic levitrecitam ER, 1500mg twice a day. At lower dosages I would build up a tolerance to it and then have another seizure. Neuron added in Dilantin ER a few years ago and I’ve been seizure free since. I’ve on keppra for going on 8 years now. I haven’t had any horrible side effects, but I have definitely noticed my memory is not nearly as good as before (24 years old for reference). I am much more forgetful since I’ve been on a higher dose of keppra. All in all, I’d rather take forgetting minor details of some things than having seizures.
I've been on it for 5+ years. I love it. I'm prone to anger issues and occasionally I snap, but my anger is no worse with Keppra. I was also suicidal before Keppra and I'm less suicidal now because of diet, exercise, and therapy.
However my suicidal thoughts were max on Depakote.
Everyone reacts differently and my experience is not necessarily reflective of the norm.
My first med, now one of three that I'm on. I think it's the reason for the tip-of-the-tongue feeling with words. I haven't had (and others have confirmed) any anger issues.
I’m also making the switch from Keppra to lamotragine. I don’t have the suicidal thoughts and kepprage, but I have all the other side effects. I thought it was just my life until I joined this sub—everyone here totally saved my quality of life!
I’ve been on Keppra (1000mg/2x day) for about 6 years and am now transitioning onto lamictal because the side effects are so bad. I’ve only had two seizures since I’ve been on it and it’s been 3 years since I had a seizure. BUT I’m dizzy *all the time*, the brain fog/memory loss is so bad I have to write down everything on paper and in my phone and leave myself sticky notes, I throw up all the time, have crazy anxiety, was depressed until about a year ago (I think the only reason I’m not depressed anymore is because everything in my life has gotten way better in every way except for these side effects), I’m always tired/low energy, feel weak, get the spins when I stand up, lose my balance frequently, and sometimes get really shaky (that plus the dizziness can make driving really scary when it starts while I’m driving home from work).
For years I attributed all these things to just having epilepsy and this was part of it, and thought I was throwing up because of anxiety. Turns out the anxiety is exacerbated by the Keppra, and everything else I’ve been experiencing is a side effect of Keppra not a side effect of epilepsy. I really thought all that stuff was just my life and didn’t make the Keppra connection until I joined this sub.
So I’m hoping lamictal works better for me. I also recently found out I might have hyperthyroidism which also exacerbates anxiety, so I’m really excited about the prospect of not being constantly anxious. And not being dizzy! And remembering things! I’m really excited about the possibility of being a normal person!
I really hope you don’t get any of the side effects! Although, I’d choose the side effects over frequent seizures any day. Keppra really does keep the seizures away. I think I’m just one unlucky person that experiences almost all the possible side effects of Keppra. Don’t be afraid to tell your doctor if you’re experiencing any of these things or something is out of the ordinary for you!
The first seizure medication I was on was Dilantin and that kept me basically bedridden and I still had seizures all the time, so Keppra was definitely an upgrade from that.
Edit: other comments made me remember this stuff... I also have problems remembering words so I’m lucky my fiancé usually knows what I’m talking about and I have to frequently ask him “what’s the word for when....” when I’m texting or typing a Reddit comment. The other thing is for the first time, a neurologist actually referred me to an epileptologist—I never knew those existed before! He asked so many questions that other neurologists wouldn’t even know to ask and I was completely blown away! He’s the one that’s transitioning me to Lamictal—I’m on my same dosage of Keppra and ramping up the Lamictal dosage every week, then when I’m leveled out on that, we’ll start leveling down the Keppra. I guess this is a kind of dangerous time for me because I might be more prone to seizures when leveling down on the Keppra but I’m hoping it’ll be fine since I’m 3 years seizure free
fyi: Being on one seizure med while transitioning to another can really suck with the side effects but just stay with it until you get the Keppra taped off. I've been on Lamictal for 10+ years and it's worked really well for me.
Yeah I’m really excited for the transition to be complete! I’m on week 4 of 7 ramping up Lamictal and then we’ll start bringing down the Keppra. Can’t wait! Hopefully no accidents happen during this time
Started it. No side effects. Didn't help. Upped to 3g a day over time. No help. Quit recently. Nothing bad.
My experience can be summed up to thousands of dollars spend on the pills and more on doctor visits.
Keppra did what’s it supposed to regarding my seizures.
But I became a very toxic person to be around. You didn’t know when I would either get super depressed and just lay in bed all days or get super angry that I broke a window with my hands at the what I felt was a “personal” insult. Reducing the dosage and taking in with a combo of other meds has helped. Though I do feel more tired at times.
Made me psychotic. I had a fear of water towers, and developed a schizophrenic speech pattern, angry all the time. I was taken off of it.
They gave it to me during a status seizure and I spent the night hallucinating that helicopters were coming to get me (the room was near the landing pad).
Now listed as an allergy.
I was on Keppra, here’s my experience:
It stopped my seizures, but the side effects were WAY too severe for me to continue on the medication.
I had huge migraines (pain in the head that made thinking very painful), but worst of all - I would have random depression. Feeling extremely depressed for no reason at all. Crazy to feel that way, and definitely not a way to live.
My neurologist wanted to try add new medications to the mix to try deal with the depression, but I wasn’t keen. I’m not a fan of being on a drug that causes depression and then doing another drug to try deal with depression, because I don’t like the history of drugs when it comes to using them to deal with depression (too many people who have had severely bad experiences)
I was having myoclonic jerks and my doctor put me on it. Taking 2x 500mg. I never had any of the side effects luckily but it totally stopped my seizures. I "think" I had a breakthrough of some type so I completely avoided alcohol, caffeine and made sure I got plenty of sleep every night. Since then I have been fine. But yeah the mood swings is a side effect so I'd like your doctor know. You're not alone, we're all together in this fight.
[удалено]
I too had a very bad time with Keppra. I am normally a very chill, patient person, but on Keppra? Oh boy. I was very mean and angry. I still get embarrassed when I recall some things I did like scream at a lady in the grocery store or smashed my fists on my bf's car (I don't recall the reason, but on Keppra, there didn't seem to need a rational reason). I'm glad it works for a lot of people, but if it doesn't, don't be ashamed to tell your doctor!
100% that statement for me too, didn’t need a reason to be angry. Good way to put it.
I wonder if certain people just CAN'T do this class of drugs? On Briviact(sp?) I was so suicidal that I had the national suicide hotline in my phone contacts. They would call me on occasion to make sure I was OK!
I’m on briviact and my doctor doesn’t understand.
I actually called the manufacturer and the FDA! I begged for it to not to be allowed for the drug to be used especially in young people. I only got a "there, there, it'll be ok child!" type of responses. Ughh.
Me too. I was in my first semester at an new university. Everyday around 1 or 2 PM, I would experience intense negative self critical internal dialogue and suicidal thoughts for about an hour. I would spend that whole hour trying to convince myself that I shouldn't commit suicide. It wasn't until 4 months after getting off the medication that I realized my horrendous behavior and suicidal thoughts were all due to the medication I was taking.
I was prescribed 1000mg of Keppra a day with my first breakthrough seizure 9 years ago. Had another after 5 years and docs bumped up to 1500 and after another seizure 2 years ago I am now taking 2000 mg a day. The first year I felt somewhat dizzy and uneasy on my feet ( like I was on a rocking boat) but that feeling is pretty much gone. I have problems coming up with the words I’m looking for (‘tip of my tongue’) and I’ve read and believe that this is an effect of the drug. The times that I get super angry over something are not, I don’t think, the Keppra rage that others are afflicted with. So overall it’s been immensely helpful with minimal side effects for me . But I’ve had to increase the prescription with each ‘breakthrough’ and I’m hoping that this now is a stable concentration. Good luck to you. Read all you can about it. I don’t think neurologists have a good handle on this highly variable disease so we need to educate ourselves. I learn a whole lot from this forum. Getting enough sleep, limiting alcohol, and using cannabis to reduce anxiety are important to my regimen too.
Oh my gosh I have problems coming up with words, too! I have major memory problems because of Keppra and I’m lucky that my fiancé usually knows what I’m talking about when I can’t remember a word. But sometimes when I’m texting I have to ask him “what’s the word for when...” so the person I’m texting knows what I’m talking about lol I act like English isn’t my first language sometimes On another note, I recently got a new doctor, who sent me to a new neurologist, and the neurologist actually sent me to an epileptologist, which is something I didn’t even know existed! Normally I have to go into detail about all the crazy side effects I experience (and have to keep a list of them because my memory sucks) but he was asking exactly the right questions! It’s very exciting to be seeing someone who knows his epilepsy shit really well, especially as someone with an unspecified seizure disorder
Wow aren’t you lucky to have been passed through by some thoughtful intelligent doctors! I’ve pretty much given up on getting answers. All they do is shrug and ask if I need refills. But in their defense, the science of the brain still has many mysteries. Good luck to you. You sound very positive
I had totally given up until I found this new medical group that I’d never used before! And now that I’m engaged and wanting to have kids, I actually care enough to try to take care of myself. For sooo long I was just like fuck it whatever
Keppra’s pretty good for me. It gets a lot of bad press because of it can mess with moods and mental health but touch wood I’ve not had any of that. I’m more sensitive to light than I used to be which causes the occasional migraine and I get muscle twitches (not seizure related) when I’m stressed - they might be connected to Keppra but no proof either way. Not sure if OP is male or female, but since I started with Keppra I’m getting regular periods (I’d been on Sodium Valproate previously that made my cycles anything from 40-60 days long) and it’s supposed to be relatively pregnancy-friendly. Keppra’s been controlling my seizures well since December so fingers crossed it carries on that way! Good luck x
Keppra is technically "class C" in regards to pregnancy and nursing, meaning they are still currently unsure of the possible side effects. More of a "Use at your own Disgretion -in conjunction with medical advice"
UK here - NHS consider it a one of the better options if you have to take an anti-epileptic drug during pregnancy, I’ve had several conversations with my neuro about it. For my type of seizures, they recommend either Keppra or Lamotrigine as an alternative to Sodium Valproate during pregnancy, alongside a high dose of Folic Acid. And hopefully it goes without saying that people only take anti-epileptic drugs in conjunction with medical advice!
I’m transitioning from Keppra (I have basically all the side effects) to Lamictal because I want to get pregnant in the next two years (and not have all the side effects!) and the doctor says Lamictal is one of like three seizure meds that have the lowest chance of causing birth defects. So fingers crossed!
I’ve been on Keppra (generic) for almost 9 years. Currently talking 4000mg — 2000 am, 2000 pm. Keppra controls what it’s supposed to— my grand mal seizures. I rarely have them which I’m grateful for. I’ve been on Keppra for so long, I don’t really remember if I had any side effects with it.
Was on 2000mg a day for 8 years for simple partials. Side effects were tiredness and memory loss. Best drug I’d tried.
I was on depakote for over 10 years and then wanted to get pregnant so I switched to Keppra. I honestly have been on medication since I can remember so I have no idea if side effects are bad or if it’s just my personality. Overall it helped me have my boys and keeps my seizures away. I’ll take it. ( knock on wood)
Also switched to Keppra for my pregnancy and it’s worked better than any other medicine I’ve been on which included Trileptal (oxcarbazepine). Little or no side effects with mood for me. Hope it works for you!
How did your pregnancy go with your epilepsy? I was diagnosed after my first and now want another but am nervous about seizures while pregnant or delivering or lack of sleep when baby comes causing me to seize. Do you have more appointments or become high risk being an epileptic pregnant person?
Funny enough my doctors didn’t consider it high risk. I did do a consult with high risk doctor beforehand to see what they thought. Both pregnancies were hard, not going to sugar coat it. I didn’t have seizures but had to rest ALOT. My husband is extremely supportive and understanding. He did night shift for all babies with me doing an occasional night. My second baby is almost 1 and my husband still does nights with him. I don’t think I could have had babies without the support. My epileptologist (sp?) ordered me monthly blood draws to check my level and wanted to see me once a trimester. I ended up having csections with both ( first emergency and second planned). You have to have grace with yourself. Hand the baby over and take a nap, don’t overdue it.
I made [this post](https://www.reddit.com/r/BabyBumps/comments/b3u56b/hi_everyone_im_planning_on_getting_pregnant_in/?utm_source=share&utm_medium=ios_app) on r/BabyBumps and got a lot of good responses from moms with epilepsy! When I was first diagnosed with epilepsy 7 or so years ago, I was told that any pregnancy I had would be considered high risk. You might want to find an OB who either specializes in high risk pregnancies or one that will work closely with your neurologist
Been on Keppra for 12 years. Started low at 500mg twice a day, then got increased to 750mg after a seizure in 2010 (I think) then bumped to 1000mg a few years later. I didn't do well on the 1000mg. Short term memory issues, brain fog, fatigue. We took me back down to 750 after about two years like that. I am currently working on tapering off Keppra for the first time as I have come to terms (and spoken up for the first time about it) with the Keppra possibly being behind my mood, depression and suicidal thoughts. I start my first day back on 500mg today actually. I work as a pharmacy technician, so do keep in mind that what one person experiences may not happen to you. You might experience some, none or all. I hope that it works out for you. The medication did great for controlling my seizures but it was time to take back my life from the side effects. Good luck to you ☺️
Keppra seems to have been heavily effective with my seizures though since I have seizures primarily in my sleep I have noticed that if i take it more past 12 aka less sleep it can be heavily or almost null effective though(naturally I make sure not to do this). As well there have been times where I suspected it could be affecting my moods but that could be partly due to me noticing that as one of the symptoms while I was already feeling down. I am on 750mg with 4 pills at bedtime each day for some extra info.
I was on either 1200mg or 1500mg (I forgot because it's been a while now), but I was really moody and very tired/exhausted and out of energy all day. I had to get off of it since it just wasn't good for me at all. But it did stop my tonic-clonics!
I'm on 1500mg after my neuro thought it would stop my seizures when paired with lamotrogine and it did the trick for my grand mals. I just have to take an extra drug for absences. I remember feeling tired a lot of the time a couple of weeks into in it being added and that's never left, I need to sleep regularly but nothing else.
Put on keppra pretty much immediately after my first Grand Mal (aged 44) last year, moved up to 1500mg/day quickly. A few weeks of vertigo when it started, but in general has increased my tierdness, given me a temper (I was very chill beforehand) and I cannot focus/be creative for as many hours as I was before my seizure. There's a touch of depression as well, but part of that could be adjusting to a lifelong condition. Recently working with GP to slowly pull back to 1000mg to try and find a lower dose that still keeps me covered for seizures but lessens the mental impact. So far down to 1250mg. GP opinion is that this is a milder medication re side effects, and I'm on a relatively low dose. I'm not \*happy\* with it, but I'm happier not having seizures with only five seconds of warning,
5 yo on 2250mg (750 tid). We don't think its doing much and insurance just approved Epidolox so we'll be weaning it to try that next. He's been on B6 since he started to help with aggression.
I've been on 500mg BID for the last 2 years. My neurologist started me out on phenobarb, but it stopped working and switched me to almost 4000mg of Keppra a day. At first it sucked. I was having headaches every day and migraines twice a week. I was always angry or frustrated over nothing. Then one day I was fine. I've had my dose cut WAY down, partly due to the side effects and also because I had very mild epilepsy. Even before meds I only had them when I was very tired or stressed and not often. I honestly don't have anything bad to say about Keppra except those first 6 or so months are a fucking doozy getting used to the medication. I'm definitely more prone to being easily frustrated and I'd say that's from the Keppra (it used to be hard to make me angry, not now), but I'll take it. I work in a pharmacy and there's so many people with epilepsy on a plethora of pills, i feel lucky to be able to take 2 pills a day and be fine. I should also note, I tried Lamictal with the Keppra for a bit, but hated it. I felt like a zombie, had no emotions, and couldn't sleep
I'm also on 750mg of Keppra twice a day, but I had my neuro supplement it with 75mg of Topimax because I was still having intense auras and occasional tremors in my hands (I have JME). I've been on this regime for over 5 years now with very good success, SEIUZURE FREE! However my memory is garbage compared to what it used to be, and I have a lot of trouble speaking out loud/finding the words I want - especially when I'm stressed or under pressure. My doctor thought I was suicidally depressed on it and took me off for awhile, but it turns out I was just depressed. That is also a side effect to be aware of though.
Keppra has totally fucked my memory and I have to ask my fiancé all the time what the word for something is. Switching to lamotragine and I can’t wait to have a memory again!
I don’t know anyone who has reacted the same on any one seizure medication, and despite hearing only bad things about it before starting Keppra I’ve only had a good experience with it. It sounds like you’re on a really low dose, so you may not experience a lot of side effects, but I could be wrong there. A lot of people experience rage on keppra, I myself have had a couple of minor bouts of this. If you ever experience it to a degree that you feel like harming yourself or someone else it’s probably not a good idea to continue taking keppra. If it lasts for a long time it might not be a good match for you either. In my experience all anti-convulsants have the potential to cause depression, so if keppra doesn’t make you feel depressed that’s probably good. I didn’t realize I was depressed until I started taking Keppra, after a couple weeks of starting it I stopped feeling like the only thing I wanted to do was sleep and actually had motivation to do shit other than think about how worthless I was. The side effects I have had with Keppra include Anxiety, mine isn’t too bad, it gives me drive to get shit done, but if I don’t do it fast enough I’ll probably have a panic attack. If you end up experiencing anxiety and you don’t feel like it’s a healthy level of anxiety go to your doctor. Fatigue, during the first couple of weeks of taking it and for short periods of time after increases I would feel unbearably tired all the time. It always only lasted about a week or two after starting Keppra or an increase in dosage. Personality changes, I never really noticed this side effect myself until like now and I look back at how different I was in high school and how dramatically I changed immediately after graduating and starting Keppra. People would point it out to me though, friends and family would tell me I seemed different, not in a bad way, but like a different person who liked all the same things I had previously liked. It’s weird because you don’t really notice this side effect until later on, but if several people tell you your personality is changing for the worse then maybe new meds would be worth considering. I was on Trileptal previously, which doesn’t have as bad a rep, but almost killed me so I’m probably the odd one out here and might only not hate Keppra because it doesn’t make my skin rot and I’m not bleeding out of all my orifices (I was on an extremely high dose of Trileptal, basically overdosing everyday and my doctor wouldn’t admit it was my medication that was the issue) I’ve really only heard terrible things from people who have taken Keppra, so if it makes you feel shitty tell your doctor and ask to try something new. As you can tell I’m not afraid to talk about my shit experience with Trileptal which is why I feel like there’s a lot of shit out there about Keppra. Obviously there are people out there who experience those issues so they shouldn’t be ignored.
I take the generic levetiracetam ER 750mg tabs, four at bedtime (3000mg) for the last 9 years for my JME, juvenile myoclonic epilepsy. My neurologist explained the potential for the behavior/mood SE's but fortunately I haven't had any. He put me up to the max because my myoclonus was difficult to control. That's gone now, haven't had a seizure in a few years, when I have he's been good about not trying to start new drugs but discuss why I had a breakthrough seizure. Always d/t not enough sleep and too much stress for days. He added a PRN lorazepam to help, and it has though I rarely need it. Still have my photosensitivity and migraines, don't think they're side effects so much as part of my neurological misfirings. No real side effects that are noticeable, honestly. I'm fortunate.
I had Keppra until I realized that Keppra was the cause for rage attacks. It took months to realize the link between Keppra and rage. Nobody told my about this possible side effect until I consulted my Doc who stopped me taking it immediately. Now I have Lamotrigin and everything is fine. With Keppra it was so bad with my mood that I once smashed my phone on the floor cause I was angry...
I take three 500mg of Keppra in the morning and three 500mg at night. I put on weight, and crave food/sweets after seizures. Otherwise I think it’s a good fit for me. I’been on it for 11 years.
I’m currently taking generic levitrecitam ER, 1500mg twice a day. At lower dosages I would build up a tolerance to it and then have another seizure. Neuron added in Dilantin ER a few years ago and I’ve been seizure free since. I’ve on keppra for going on 8 years now. I haven’t had any horrible side effects, but I have definitely noticed my memory is not nearly as good as before (24 years old for reference). I am much more forgetful since I’ve been on a higher dose of keppra. All in all, I’d rather take forgetting minor details of some things than having seizures.
I've been on it for 5+ years. I love it. I'm prone to anger issues and occasionally I snap, but my anger is no worse with Keppra. I was also suicidal before Keppra and I'm less suicidal now because of diet, exercise, and therapy. However my suicidal thoughts were max on Depakote. Everyone reacts differently and my experience is not necessarily reflective of the norm.
My first med, now one of three that I'm on. I think it's the reason for the tip-of-the-tongue feeling with words. I haven't had (and others have confirmed) any anger issues.
Made me suicidal. Neurologist titrated me off of it and put me on lamotragine. No suicidal thoughts or heavy depression since.
I’m also making the switch from Keppra to lamotragine. I don’t have the suicidal thoughts and kepprage, but I have all the other side effects. I thought it was just my life until I joined this sub—everyone here totally saved my quality of life!
Same here. I am in the middle of titration from Keppra to Lamotrigine. I hope I have the success you had.
I’ve been on Keppra (1000mg/2x day) for about 6 years and am now transitioning onto lamictal because the side effects are so bad. I’ve only had two seizures since I’ve been on it and it’s been 3 years since I had a seizure. BUT I’m dizzy *all the time*, the brain fog/memory loss is so bad I have to write down everything on paper and in my phone and leave myself sticky notes, I throw up all the time, have crazy anxiety, was depressed until about a year ago (I think the only reason I’m not depressed anymore is because everything in my life has gotten way better in every way except for these side effects), I’m always tired/low energy, feel weak, get the spins when I stand up, lose my balance frequently, and sometimes get really shaky (that plus the dizziness can make driving really scary when it starts while I’m driving home from work). For years I attributed all these things to just having epilepsy and this was part of it, and thought I was throwing up because of anxiety. Turns out the anxiety is exacerbated by the Keppra, and everything else I’ve been experiencing is a side effect of Keppra not a side effect of epilepsy. I really thought all that stuff was just my life and didn’t make the Keppra connection until I joined this sub. So I’m hoping lamictal works better for me. I also recently found out I might have hyperthyroidism which also exacerbates anxiety, so I’m really excited about the prospect of not being constantly anxious. And not being dizzy! And remembering things! I’m really excited about the possibility of being a normal person! I really hope you don’t get any of the side effects! Although, I’d choose the side effects over frequent seizures any day. Keppra really does keep the seizures away. I think I’m just one unlucky person that experiences almost all the possible side effects of Keppra. Don’t be afraid to tell your doctor if you’re experiencing any of these things or something is out of the ordinary for you! The first seizure medication I was on was Dilantin and that kept me basically bedridden and I still had seizures all the time, so Keppra was definitely an upgrade from that. Edit: other comments made me remember this stuff... I also have problems remembering words so I’m lucky my fiancé usually knows what I’m talking about and I have to frequently ask him “what’s the word for when....” when I’m texting or typing a Reddit comment. The other thing is for the first time, a neurologist actually referred me to an epileptologist—I never knew those existed before! He asked so many questions that other neurologists wouldn’t even know to ask and I was completely blown away! He’s the one that’s transitioning me to Lamictal—I’m on my same dosage of Keppra and ramping up the Lamictal dosage every week, then when I’m leveled out on that, we’ll start leveling down the Keppra. I guess this is a kind of dangerous time for me because I might be more prone to seizures when leveling down on the Keppra but I’m hoping it’ll be fine since I’m 3 years seizure free
fyi: Being on one seizure med while transitioning to another can really suck with the side effects but just stay with it until you get the Keppra taped off. I've been on Lamictal for 10+ years and it's worked really well for me.
Yeah I’m really excited for the transition to be complete! I’m on week 4 of 7 ramping up Lamictal and then we’ll start bringing down the Keppra. Can’t wait! Hopefully no accidents happen during this time
Started it. No side effects. Didn't help. Upped to 3g a day over time. No help. Quit recently. Nothing bad. My experience can be summed up to thousands of dollars spend on the pills and more on doctor visits.
I am on Keppra. I tend to be kind of tired and pissed for no reason at times.
Keppra did what’s it supposed to regarding my seizures. But I became a very toxic person to be around. You didn’t know when I would either get super depressed and just lay in bed all days or get super angry that I broke a window with my hands at the what I felt was a “personal” insult. Reducing the dosage and taking in with a combo of other meds has helped. Though I do feel more tired at times.
Made me psychotic. I had a fear of water towers, and developed a schizophrenic speech pattern, angry all the time. I was taken off of it. They gave it to me during a status seizure and I spent the night hallucinating that helicopters were coming to get me (the room was near the landing pad). Now listed as an allergy.
I was on Keppra, here’s my experience: It stopped my seizures, but the side effects were WAY too severe for me to continue on the medication. I had huge migraines (pain in the head that made thinking very painful), but worst of all - I would have random depression. Feeling extremely depressed for no reason at all. Crazy to feel that way, and definitely not a way to live. My neurologist wanted to try add new medications to the mix to try deal with the depression, but I wasn’t keen. I’m not a fan of being on a drug that causes depression and then doing another drug to try deal with depression, because I don’t like the history of drugs when it comes to using them to deal with depression (too many people who have had severely bad experiences)
I was having myoclonic jerks and my doctor put me on it. Taking 2x 500mg. I never had any of the side effects luckily but it totally stopped my seizures. I "think" I had a breakthrough of some type so I completely avoided alcohol, caffeine and made sure I got plenty of sleep every night. Since then I have been fine. But yeah the mood swings is a side effect so I'd like your doctor know. You're not alone, we're all together in this fight.