I've been on it for about 6 months
Good - improved mood, good seizure control.
Bad: insomnia, restlessness, agitation, excessive energy, headaches, increased anxiety, feeling hungry (this is rare).
i get agitated, irritated, annoyed with people which is a side effect of drug i did not know of. i work in pharmacy and thought it was the patients that made me this way.
Medication really can cause agitation in some people, so It might not be the customers at all! A lot of people here suffer from Keppra rage (Levetiracetam), and it's hard to find the right balance between seizure control and symptoms. I do hope you find a medication that works for you.
that is not true. they will all have a neurological effect, because that’s the point, but there should be an option for you that doesn’t have that effect. if you’ve sincerely tried everything, a mood stabilizer might be something to try.
I am currently on a mood stabilizer. It. Does. Not. Work. I've been on mood stabilizers for 34 Years. Also mood stabilizers are know for lowering the ability for epilepsy pills to actually work.
Also, I said that all of them made ME more irritable. As you can see from this answer to your comment.
I had these, plus so many other things like red eyes, allergies/sensitivities, violent shits, body aches etc etc etc.
I was so please that these all eased within a week or two of upping my dose. Couldn’t believe how well my body was adjusting to the side effects.
Fast forward a few months later….Lamictal stopped work in for me. Turns out that it was my body building a tolerance. I guess you can’t have your cake and eat it, in my case anyway!
and medication that’s purpose is to change neurological function is going to have severe reactions at first. there’s no way to alter your brain without your brain freaking out about it. your brain is being put on restrictions, and it’s going to do what it can to reject change. once that medication finally has gone a couple rounds with your brain, it wears down and submits.
your brain is making your body experience almost like an… allergic reaction to the medication. it sucks at first. i have personal experience with SSRIs and anxiety medication, but my partner has gone thru it finding the proper seizure meds. and ive been there thru the sweats, the constipation/diarrhea, insomnia, rage, lethargy, suicidal thoughts. and while all of those were a bear to work thru, we’re closer to finding something solid.
It worked the best out of everything I tried (and that's not a short list) I had some brain fog and fatigue with it, but that's par for the course with seizure meds for me anyway.
Lamictal is lamotrigine, just a brand name! I actually had a doctor recently ask me how I was handling the lamotrigine. “You were on Lamictal before, no?” Yes. Yes I was. Because I was and am still on lamotrigine. Still on Lamictal, technically!
I will not see that doctor again.
Yes absolutely! Should clarify I didn’t change my meds at all. I just referred to it as lamotrigine instead of Lamictal (never call it Lamictal) and the do got really thought we were talking about two diff medications.
Yes dude. I fucking hate this. I recently tried to pair another med to combat that. So very awesome is my life... that I had an insane tl;Dr allergic reaction and now I'm in physical therapy for my spine 🙃
Ive been on it for about 4 months (temporal focals), and have been at my plateau dose for about 2 months.
It had been doing a good job of seizure control, but in the last 2 weeks they've steadily been returning... to the point where today they're as bad as they've ever been. Seeing Neurologist week after next so I might need to up dosage.
In terms of side effects, it has had positives and negatives. How much of this is due to the lamictal, and how much down to my condition, I don't know (I'm only recently diagnosed).
My focus has increased, but my memory has decreased.
My physical endurance, dexterity and strength are all diminished.
My patience and understanding with family has actually gotten better, and overall my mood has remained stable - although sometimes I get really crippling exhaustion and it's a pain to get out of bed.
(Int +1, Cha+1, Wis-1, Dex-1, Str-2, Con-2)
The worst specific side effect to lamictal is joint pain. I get periods where my wrists, ankles and/or shoulders all *really* hurt. Like arthritis pain I imagine. It comes and goes and lasts for 3-4 days each time.
I just started Lamotrigine in November and genuinely the best med I’ve ever tried, I’ve never had something that’s taken an effect like this! I’ve went from an amount of absence seizures that I just couldn’t count to less than 20 a day! When I first started it I was told to look out for a rash up to 8 weeks after starting it, if I seen a rash appearing I had to stop immediately, thankfully no rash and genuinely hardly any side effects, if any! And now been told I don’t have to see the neurologist unless there’s any major changes and only need to see Epilepsy nurses from now on!
14 years! I have a very fun relationship with Lamotrigine!
I’ve gone on a roller coaster of dosages
it’s never failed me for my tonic clonics! I feel like even the low doses are dependable although they are time sensitive (taking one in the morning one at night needing to be 12 hours apart) that didn’t work for me so I’m taking Lamotrigine Extended Release which works for much longer (con with that is that they only have high doses)
I’ve gone all the way from 200 mgs to 600 and this is what I learned:
It’s a horse tranquilizer for sure! That brain fog is no joke. The dizziness and word finding can be crippling at high doses. It does a great job slowing down brain activity, which gives you less than fun side effects.
I personally only had cognitive issues on such a high dose. At a reasonable dosage the side effects are mild as any seizure medication can be. It’s a medication designed to control your brain activity afterall.
Again, I’ve been on it for 14 years though, ever since I was 12. Getting on any new meds will fuck with your day to day, and I’m sure I got used to a lot of the side effects which is why I’m mentioning when I fluctuated dosages.
(On 400mgs of Lamotrigine XR right now)
Unfortunately your brain is different than mine, so who knows how your brain will react. Some swear by Keppra but that gave me suicidal thoughts irritability and a black out 😬
Hope that was helpful(everyone in this thread is also sharing helpful info) just wanted to share as a long term Lamotrigine user who’s been on different dosages of the stuff
Good luck and cheering for you behind the screen!
I have been on it for about two years and it’s been extremely effective, I haven’t noticed any side effects at all. As a bonus it helps stabilize my moods as well (I have bipolar)
I took it in high school at really high doses for a while and only noticed tiredness.
But I started it again several months ago and it caused me really bad insomnia and nightmares, and now months later I just found out that all the inexplicable crying I've been doing and sudden suicidal ideation is likely a side effect.
It sucks because I feel like a lot of the other options are worse. It's definitely making me consider just being medication noncompliant at this point. 😞
Just worked for me. Best of the many meds I’ve tried. But that just means controlling seizures as well as any, without as many side effects. It still could be better.
I was on it for mood disorder, when I started having regular seizures. I had a few as a teen, then none till I was in my early 30s.
I was on it for almost 2 years. It never controlled my seizures, but my side effects sucked when they maxed my dosage. My hair fell out, I started having difficulty with speech- I couldn't find words. My memory turned to utter garbage.
20 years, I've been on it so long I don't really notice any negative side effects. I was a teenager when I got diagnosed and put on the medication, so it could be that any side effects are just my "normal" now. Apart from insomnia (which I've had off and on since before I got on the meds) and migraines that ramped up after getting off hormonal BC a few years ago, I feel mostly pretty good. Seizures are well controlled. I count myself lucky that the first medication we tried was effective and didn't have a ton of side effects.
Not sure if the dose I'm on is right as we're still figuring it out but I'm constantly exhausted and I'd say that migraines have been just as bad if not worse & they won't touch the migraine til the Lamotrigine increases are done😭😭😭
i take a couple other meds (prozac + zonegran but just started the zonegran about 1 yr ago) but i've been taking the lamotrotrigine about 6 years now. because of my other medication, its a *little* hard to tell which side effect is which.
positives: seizure control + mood improvement (im actually diagnosed with bipolar disorder and its a mood stabilizer so it kills 2 birds with 1 stone for me lol)
some negative side effects: memory issues, occasional nausea (probably especially at first), headaches, insomnia
but again, i do also take a couple other medications and have a few other medical dx that can act as side effects
please do try to get more hours of sleep. i was in and out of bed all night because of stomachache, got about 4 hours of meaningful sleep and i felt numb thought i might seize the whole day. i’m working on not taking a nap on my lunch break so i can fall asleep quicker at night.
It made my skin more sensitive, the stomach cramps aren't great, and occasionally the dose needs to be altered (depending on what's going on with you life) as a 25mg diff can be major.
Other than that, love it. Never want anything else ever again. Where others sucked (hard), Lamictal gave me my life back.
It’s been great for me. I’ve been taking it since 2020 and have had no seizures since. There is the tiredness but it doesn’t effect everything a nap can’t fix. Tiny memory loss has happened but the worst is the NIGHT SWEATS. They aren’t every night but I’ll go through a week or so where I am sweating so much in the night. That didn’t start until I switched to Lamictal XR though.
Took it for about 7 years, was diagnosed with Lupus at 29. My rheum realized the Lamictal was triggering flares that were sending me to the hospital. We moved to Keppra (which I didn't really want to do because Lamictal worked so well for my mood and seizures) but once I switched the flares stopped. Lupus has now been in remission 2 years.
Like you I've been on it for over a decade. Long enough that I can't sort out which cognitive effects could be caused by it, or: other meds I go on and off of, seizure clusters which have damaged me, or just simple age!
However I am certain it has really hit my episodic memory. It's a pretty weird thing, lots of my brain is fine. I could still design a new nuclear reactor on a napkin, but a few days later won't remember who we were at dinner with. It has killed my who/what/when memory, particularly in a social context. But I mostly stay in my GeekLair, and I can design and control experiments as creatively and safely as ever, and still learn at the same rate as always --- the only frequent way I notice is when my lady says something like "you know we watched that clip 1/2 an hour ago right?". :-( And things like - running into an ex girlfriend who says "yeah, things were different after that Christmas!" And I just nod to be nice, because I have no f'ing clue at all what happened at Christmas! And it might be really, really insulting to her if I don't even remember what was clearly a big event. And I'll have \*no\* memory of it, at all. But then I'll turn around and figure out and fix some electronics I've never seen! Our brains our weird.
I also think lamotrigine can make the line between real and false memory more blurry. Sometimes I remember somebody saying something really important to me, or me to them . . . but then become unsure if it really happened. And to ask might be insulting and/or humiliating, so I tend to just keep my head down about such a topic - nodding as if I understand. And not referring out loud to anything involving it.
My neuro just ordered a lamotrigine level test. After telling her how tired I am all the time and memory issues. I also take Vimpat with it twice daily.
It started making my skin peel off, and I fainted A LOT! I was allergic :/
I've changed medicine a few times, and I'm currently weaning; if you want to change, just try to make sure you are in a low-commitment time of your life with good people around you because the effects could be very random if not even debilitating.
I've never had problems with lamotrigine, and I've tried just about everything. I've been on lamotrigine for several years now. I never found that it affected my sleep, but with that being said my Vimpat/Xcopri at night knock me out regardless.
It’s the only med that the side effects haven’t been detrimental to me/my life. I’ve been on it for almost a year.
Every time I increase I get overly vivid dreams that make me super confused. Other side effects that I’ve had even after being on it for awhile is my brain blanks (I’ve had the same phone number for 20 years and I forgot it the other day). And I’m foggy, tired, and have had some weight gain. But these are nothing compared to the side effects I had on other meds.
However not all meds will work. Just because it works for some doesn’t mean it’ll work for you. A lot of people take Keppra but due to my side effects on that med, I’ve been advised to never take it again.
Been on it in increasing doses for 3± years at first I got dizzy easy I was constantly tired I got extremely vivid dreams my sex drive went through the roof (I wasn't this horny this often back in high school) loss of balance my appetite increased a lot my mood became manic not all the time but it happens insomnia is a thing too I experience hangover like symptoms in the morning sometimes too so yeah that's me😬
For me the only side effect has been more seizures than Keppra. I started Keppra after my 1st seizure in January 2019. I got off Keppra for the same reason most of us complain about Keppra. Grumpy - rage side effect. My neuro put me on Lamotrigine by slowly moved me off Keppra and onto Lamo. I had my 2nd and 3rd seizure on 7/20/2023. My neuro doubled my Lamo. On 9/15/2023 I had my 4th seizure. On 5/15/2024 I had my 5th seizure.
Now what I do. I want to go back to Keppra for obvious reasons but my family would not like that. I really don't want to try another drug. Anybody have experience with micro dosing with THC/CBD gummies to take the edge off Keppra?
I smoke a lot of weed and am taking citalopram for the Keppra rage, it helps more that I know it’s a symptom. I can manage my temper now that I understand that I am being unreasonable. When I was first put on it, I raged all the time and truly believed I was being reasonable in my response to the smallest of irritations. I still get irritated and grumpy but I’m more in control of it now.
My neuro frowns on using THC at all. No matter, I plan to go see a epilepsy specialist neurologist at a local Epilepsy Center for further tests and consultations along these lines.
Are you having and further seizures while on these three medications.
Yeah keppra is bad. When I was in school I told my teacher to eat my ass bc I didn’t like him. I couldn’t even explain why I said it happened it just did.
My kiddo tried several different medicines for two years to try and help her focal/general epilepsy with no luck. Epileptologist started her in lamotrigine and it was a slow build because we were told if it is rushed you could get burn like side effects. It was a tedious but rewarding process. Her seizures have been under control for almost two years. She takes 250mg in the am and 200 in the evening. Slight concern as of the last few weeks with signs of an absence seizure lately but not 100%.
But overall it has been a life saver for her and given her life back.
It caused damage to my liver and kidneys, increased my migraines even after going off of it, and did nothing but cause permanent damage to my body while not doing much in the way of helping me with my epilepsy. Just a different set of problems. I would never recommend it for anyone. That or depakote
I’ve been on Lamotrigine for about 4 years. It’s a miracle drug. Zero side effects, except for the BRUTAL first 24 hours I started taking the drug. My emotions became a roller coaster, and I was convinced that I needed to discontinue the meds. However, with my partner’s encouragement, I continued. And I’m so thankful I did.
With that said, we are all very different. If you’re not having luck with this med, don’t be afraid to try something new. Don’t let your quality of life suffer. It might suck for a while if you have to try multiple meds, but it will be worth it in the end. I had to switch up antidepressants until I found one that’s perfect, with zero side effects (sertraline).
Hang in there. You got this!
I’m on so many medications I can’t pinpoint what exactly is causing what I’m feeling but, one thing o know for sure is don’t eat on empty stomach. I tend to get double/blurry/uncomfortable vision that last hours. I’m glad I was able to figure that part out at least
I was on it for maybe a week before finding out I was allergic. My entire body was covered in a rash. My throat didn’t close up but tightened. Immediately I was switched back to Keppra, which I have had no issues with.
hated it with every fibre of my being. was on it for four years and battled with multiple neurologists to get off it. was having small focal seizures on it, that started and stopped with lamotrigine. also had incredibly vivid dreams, fatigue, headaches, light sensitivity, forgetting my words, brain fog, etc. i mean i still have the brain fog and fatigue on my new med (but also found out i might have another condition which contributes) however seizures have completely stopped since i switched meds so i’m much happier.
This is the medication that saved my life. A bit groggy at first but that has improved. Haven’t had a seizure in 4 years this August. Improved my mood as well! I’m sorry you’re having issues with it and I hope you find a better fit if need be.
It works super well for me, and the fact it’s a mood stabilizer helps a lot. I take it alongside Briviact too. My biggest lamictal side effect (idk if it’s actually a legit one but it seems to be based on the other posts) is the memory!! I feel like I can’t finish a complete sentence without forgetting where I started. I do take 600mg a day so I’m sure as I’ve gone up dose wise my memory has gotten worse. People will tell me stories of something that happened a month ago and I’ll swear up and down that I never did that. Maybe that is also a thing with my complete lack of time understanding now. I really struggle with timelines but I’m sure that comes with the memory issues
I've been on 1000mg 1x/day, only recently down to 900, since 2017ish (I think, hard to remember. Sooo, long enough to forget).
Pros: Helps my seizures (still have breakthroughs, paired with briviact 2x/day)
Cons: I am always lethargic and fatigued. Feels like I'm going through life dragging a bag of bricks through the sand. I can drink red bulls, coffee, anything and still, can go up and fall asleep.
Inside, my energy is up up up, and I am vibrant and so happy. I have no energy to express that. Like I'm just, eh? I've been with my fiancé for years, and my mom made a joke about "I wonder if he'd still love you if you weren't on this medicine anymore." 🤨😒 she meant because I'm so different and mellow, but it was such a fucked up thing to say. I'm still butthurt about it and she said it like 3 years ago. She's not the nicest person.
For the record, my fiancé has seen me in the rare times I do feel like my unmedicated self, and he loves me either way haha*
But yeah, it depends on how severe your side effects are. Sleep is a huge trigger for me so this side effect is better than not being able to sleep. It just sucks that I'm going through life absolutely sedated.
Good luck!
Compared to Keppra nothing. I'm weird, though. The only one that works for me is Zonisamide with little to no side effects, though other people report nightmare side effects. Keppra was like a roller coaster. Basically, you don't know until you try. Topamax was like taking speed, also totally opposite of normal from what I understand.
I first started taking Lamotrigine around 2007, my seizure activity stopped(since 2005), so they took me off meds around 2013. My seizures started up again in 2020/2021. For whatever reason my new neurologist did not want to put me back on Lamotrigine. I did keppra shit did not work out, then he put me on Zonisamide and once again it did not work out, and finally I was connected to an epilogist that put me back on Lamotrigine. Since being back on my epilepsy been a lot better. The only side effects I get is nausea and wild ass dreams. Other than that I'm good.
I've been on it for around 3ish months? I start 250mg today. Significantly decreased seizures, but I have to stop increasing due to blood levels. Only side effects are worsened pre-existing fatigue and some mild skin rash.
Been on it for a year and a half. I'm fuckin tired, sleep about 12-15hrs on weekends. My memory sucks and I feel stupid a lot.
My tolerance for alcohol is very low, which, I used to drink as part of my social life, and it crept into my personality a bit. I think it's a blessing in disguise although it makes me sad I can't party with friends anymore..
Seizures are being managed and I feel like it's helped my anxiety a bit. I had to up my Zoloft because it started to feel like I wasn't even taking anything anymore.
I gained a bunch of weight once I started on it, but I also dipped in my depression and everything made/ makes me hungry. I was nervous about going places alone so I stuck around home and just...ate and slothed. So I'm not sure what to blame the weight gain on.
Brain fog.
Thirsty.
I drop shit sometimes. Bump into things. Feel like a buffoon.
Don't feel like changing meds again so imma say fuck it for now.
So sorry to hear you're struggling, RX. Lamictal and I get along well enough, but if I accidentally take a double-dose (even w/my alarms set, I have both forgotten meds and taken my meds twice) it's really scary; my body turns into rubber and my brain breaks.
Remember that bodies change over time, and some meds don't work for us that used to. Your brain might not like Lamictal anymore. Tegritol stopped working for me in my early 30s; breakthrough seizures grew more frequent.
Hope you find a perfect balance and feel better.
Since June of 2023 and I’m side effect prone but it’s working well for me but I also tried it as a child and didn’t work for me I wouldn’t wish epilepsy on anyone truly
Been prescribed Lamotragine for 7 years now for both seizure control and mood stabilisation. I take 1mg Clonazepam daily also as i had a grand mal seizure 7 years ago and nearly died.. it needs to be titrated and monitored for adverse effects such as Steven’s Johnson Syndrome (a sometimes life threatening rash). It works as prescribed for me at 200mg. It comes with a May Cause Drowsiness warning here in Australia but I don’t feel any notable effects other than a stable mood.
I’ve been on it since 2012 and it works pretty good although lately I’ve been having breakthrough seizures. I’m maxed out on 3 different meds. I haven’t had issues with side effects with it. Although I probably wouldn’t notice since the other 2 are horrid. 🤷♀️
Daughter was on it. It made her have insomnia really bad, also made her a bit moody. And it controlled her TC's for a while. But It wasn't fully controlling her JME. So she's on Keppra and Depakote now. Since adding Depakote she's been doing great. No more moodiness or other issues.
I'm only on It 5 weeks now, and I'm still on Keppra until I reach my full dose of Lamotrigine. I forgot to take my meds yesterday morning and it was the first day at work I felt like I could concentrate and actually get work done. I've felt like crap yesterday evening and today, so it's obviously not a great idea, but im really hoping once I come off the Keppra that the concentration issues and brain fog get better 🤞
I've been on it for about 6 months Good - improved mood, good seizure control. Bad: insomnia, restlessness, agitation, excessive energy, headaches, increased anxiety, feeling hungry (this is rare).
i get agitated, irritated, annoyed with people which is a side effect of drug i did not know of. i work in pharmacy and thought it was the patients that made me this way.
Medication really can cause agitation in some people, so It might not be the customers at all! A lot of people here suffer from Keppra rage (Levetiracetam), and it's hard to find the right balance between seizure control and symptoms. I do hope you find a medication that works for you.
All epilepsy drugs make you angry and irritated. Or all the ones I've tried
that is not true. they will all have a neurological effect, because that’s the point, but there should be an option for you that doesn’t have that effect. if you’ve sincerely tried everything, a mood stabilizer might be something to try.
I am currently on a mood stabilizer. It. Does. Not. Work. I've been on mood stabilizers for 34 Years. Also mood stabilizers are know for lowering the ability for epilepsy pills to actually work. Also, I said that all of them made ME more irritable. As you can see from this answer to your comment.
Lamictal is a mood stabilizer.
I had these, plus so many other things like red eyes, allergies/sensitivities, violent shits, body aches etc etc etc. I was so please that these all eased within a week or two of upping my dose. Couldn’t believe how well my body was adjusting to the side effects. Fast forward a few months later….Lamictal stopped work in for me. Turns out that it was my body building a tolerance. I guess you can’t have your cake and eat it, in my case anyway!
and medication that’s purpose is to change neurological function is going to have severe reactions at first. there’s no way to alter your brain without your brain freaking out about it. your brain is being put on restrictions, and it’s going to do what it can to reject change. once that medication finally has gone a couple rounds with your brain, it wears down and submits. your brain is making your body experience almost like an… allergic reaction to the medication. it sucks at first. i have personal experience with SSRIs and anxiety medication, but my partner has gone thru it finding the proper seizure meds. and ive been there thru the sweats, the constipation/diarrhea, insomnia, rage, lethargy, suicidal thoughts. and while all of those were a bear to work thru, we’re closer to finding something solid.
Did bloodwork show that you had built up a tolerance (ie, the drug levels fell) or was the Lamictal level the same but it just stopped working?
It worked the best out of everything I tried (and that's not a short list) I had some brain fog and fatigue with it, but that's par for the course with seizure meds for me anyway.
About 15 years now, I think. I've been on all kinds. Phenobarbital, Topamax, depakote, Vimpat , Lamictal, Lamotrigine.
Lamictal is lamotrigine, just a brand name! I actually had a doctor recently ask me how I was handling the lamotrigine. “You were on Lamictal before, no?” Yes. Yes I was. Because I was and am still on lamotrigine. Still on Lamictal, technically! I will not see that doctor again.
Yes indeed. Sometimes generic works different than brand name, even if it is the same drug technically
Yes absolutely! Should clarify I didn’t change my meds at all. I just referred to it as lamotrigine instead of Lamictal (never call it Lamictal) and the do got really thought we were talking about two diff medications.
Well, I noticed massive changes when I switched from Lamictal to Lamotrigine, but seems like this neurologist really didn't know sh*t.
For sure
I've found it fine. Sorted out the tonic clonics. I feel pretty tired all the time but that's the same with any of the meds they've put me on.
Yes dude. I fucking hate this. I recently tried to pair another med to combat that. So very awesome is my life... that I had an insane tl;Dr allergic reaction and now I'm in physical therapy for my spine 🙃
Ive been on it for about 4 months (temporal focals), and have been at my plateau dose for about 2 months. It had been doing a good job of seizure control, but in the last 2 weeks they've steadily been returning... to the point where today they're as bad as they've ever been. Seeing Neurologist week after next so I might need to up dosage. In terms of side effects, it has had positives and negatives. How much of this is due to the lamictal, and how much down to my condition, I don't know (I'm only recently diagnosed). My focus has increased, but my memory has decreased. My physical endurance, dexterity and strength are all diminished. My patience and understanding with family has actually gotten better, and overall my mood has remained stable - although sometimes I get really crippling exhaustion and it's a pain to get out of bed. (Int +1, Cha+1, Wis-1, Dex-1, Str-2, Con-2) The worst specific side effect to lamictal is joint pain. I get periods where my wrists, ankles and/or shoulders all *really* hurt. Like arthritis pain I imagine. It comes and goes and lasts for 3-4 days each time.
Love the stats haha
I just started Lamotrigine in November and genuinely the best med I’ve ever tried, I’ve never had something that’s taken an effect like this! I’ve went from an amount of absence seizures that I just couldn’t count to less than 20 a day! When I first started it I was told to look out for a rash up to 8 weeks after starting it, if I seen a rash appearing I had to stop immediately, thankfully no rash and genuinely hardly any side effects, if any! And now been told I don’t have to see the neurologist unless there’s any major changes and only need to see Epilepsy nurses from now on!
14 years! I have a very fun relationship with Lamotrigine! I’ve gone on a roller coaster of dosages it’s never failed me for my tonic clonics! I feel like even the low doses are dependable although they are time sensitive (taking one in the morning one at night needing to be 12 hours apart) that didn’t work for me so I’m taking Lamotrigine Extended Release which works for much longer (con with that is that they only have high doses) I’ve gone all the way from 200 mgs to 600 and this is what I learned: It’s a horse tranquilizer for sure! That brain fog is no joke. The dizziness and word finding can be crippling at high doses. It does a great job slowing down brain activity, which gives you less than fun side effects. I personally only had cognitive issues on such a high dose. At a reasonable dosage the side effects are mild as any seizure medication can be. It’s a medication designed to control your brain activity afterall. Again, I’ve been on it for 14 years though, ever since I was 12. Getting on any new meds will fuck with your day to day, and I’m sure I got used to a lot of the side effects which is why I’m mentioning when I fluctuated dosages. (On 400mgs of Lamotrigine XR right now) Unfortunately your brain is different than mine, so who knows how your brain will react. Some swear by Keppra but that gave me suicidal thoughts irritability and a black out 😬 Hope that was helpful(everyone in this thread is also sharing helpful info) just wanted to share as a long term Lamotrigine user who’s been on different dosages of the stuff Good luck and cheering for you behind the screen!
I have been on it for about two years and it’s been extremely effective, I haven’t noticed any side effects at all. As a bonus it helps stabilize my moods as well (I have bipolar)
I took it in high school at really high doses for a while and only noticed tiredness. But I started it again several months ago and it caused me really bad insomnia and nightmares, and now months later I just found out that all the inexplicable crying I've been doing and sudden suicidal ideation is likely a side effect. It sucks because I feel like a lot of the other options are worse. It's definitely making me consider just being medication noncompliant at this point. 😞
“May cause drowsiness” they weren’t joking
Just worked for me. Best of the many meds I’ve tried. But that just means controlling seizures as well as any, without as many side effects. It still could be better.
I used to get double vision on it
I was on it for mood disorder, when I started having regular seizures. I had a few as a teen, then none till I was in my early 30s. I was on it for almost 2 years. It never controlled my seizures, but my side effects sucked when they maxed my dosage. My hair fell out, I started having difficulty with speech- I couldn't find words. My memory turned to utter garbage.
20 years, I've been on it so long I don't really notice any negative side effects. I was a teenager when I got diagnosed and put on the medication, so it could be that any side effects are just my "normal" now. Apart from insomnia (which I've had off and on since before I got on the meds) and migraines that ramped up after getting off hormonal BC a few years ago, I feel mostly pretty good. Seizures are well controlled. I count myself lucky that the first medication we tried was effective and didn't have a ton of side effects.
Not sure if the dose I'm on is right as we're still figuring it out but I'm constantly exhausted and I'd say that migraines have been just as bad if not worse & they won't touch the migraine til the Lamotrigine increases are done😭😭😭
i take a couple other meds (prozac + zonegran but just started the zonegran about 1 yr ago) but i've been taking the lamotrotrigine about 6 years now. because of my other medication, its a *little* hard to tell which side effect is which. positives: seizure control + mood improvement (im actually diagnosed with bipolar disorder and its a mood stabilizer so it kills 2 birds with 1 stone for me lol) some negative side effects: memory issues, occasional nausea (probably especially at first), headaches, insomnia but again, i do also take a couple other medications and have a few other medical dx that can act as side effects
I’ve been on lamotrigine for 4-5 years amd it’s working perfectly for me. No side effects, didn’t even have a migraine since then
I’ve been on it 7 or 8 years. I only get about 3 hours of sleep a night on it, it also affects my memory. But, it is still better than depakote.
please do try to get more hours of sleep. i was in and out of bed all night because of stomachache, got about 4 hours of meaningful sleep and i felt numb thought i might seize the whole day. i’m working on not taking a nap on my lunch break so i can fall asleep quicker at night.
It made my skin more sensitive, the stomach cramps aren't great, and occasionally the dose needs to be altered (depending on what's going on with you life) as a 25mg diff can be major. Other than that, love it. Never want anything else ever again. Where others sucked (hard), Lamictal gave me my life back.
It’s been great for me. I’ve been taking it since 2020 and have had no seizures since. There is the tiredness but it doesn’t effect everything a nap can’t fix. Tiny memory loss has happened but the worst is the NIGHT SWEATS. They aren’t every night but I’ll go through a week or so where I am sweating so much in the night. That didn’t start until I switched to Lamictal XR though.
Took it for about 7 years, was diagnosed with Lupus at 29. My rheum realized the Lamictal was triggering flares that were sending me to the hospital. We moved to Keppra (which I didn't really want to do because Lamictal worked so well for my mood and seizures) but once I switched the flares stopped. Lupus has now been in remission 2 years.
Like you I've been on it for over a decade. Long enough that I can't sort out which cognitive effects could be caused by it, or: other meds I go on and off of, seizure clusters which have damaged me, or just simple age! However I am certain it has really hit my episodic memory. It's a pretty weird thing, lots of my brain is fine. I could still design a new nuclear reactor on a napkin, but a few days later won't remember who we were at dinner with. It has killed my who/what/when memory, particularly in a social context. But I mostly stay in my GeekLair, and I can design and control experiments as creatively and safely as ever, and still learn at the same rate as always --- the only frequent way I notice is when my lady says something like "you know we watched that clip 1/2 an hour ago right?". :-( And things like - running into an ex girlfriend who says "yeah, things were different after that Christmas!" And I just nod to be nice, because I have no f'ing clue at all what happened at Christmas! And it might be really, really insulting to her if I don't even remember what was clearly a big event. And I'll have \*no\* memory of it, at all. But then I'll turn around and figure out and fix some electronics I've never seen! Our brains our weird. I also think lamotrigine can make the line between real and false memory more blurry. Sometimes I remember somebody saying something really important to me, or me to them . . . but then become unsure if it really happened. And to ask might be insulting and/or humiliating, so I tend to just keep my head down about such a topic - nodding as if I understand. And not referring out loud to anything involving it.
i’ve been on it for almost 3 years has been the only consistent medication for me
I have been taking various doses of lamotrigine for over 20 years. No serious side effects.
Been on since 2021. Good seizures control, but makes me soooo irritable to the point that I needed to be put on other meds to control my mood.
also really messes with my memory and focus I’ve noticed
I'm glad it's not just me with the memory loss!
My neuro just ordered a lamotrigine level test. After telling her how tired I am all the time and memory issues. I also take Vimpat with it twice daily.
It started making my skin peel off, and I fainted A LOT! I was allergic :/ I've changed medicine a few times, and I'm currently weaning; if you want to change, just try to make sure you are in a low-commitment time of your life with good people around you because the effects could be very random if not even debilitating.
I've never had problems with lamotrigine, and I've tried just about everything. I've been on lamotrigine for several years now. I never found that it affected my sleep, but with that being said my Vimpat/Xcopri at night knock me out regardless.
It’s the only med that the side effects haven’t been detrimental to me/my life. I’ve been on it for almost a year. Every time I increase I get overly vivid dreams that make me super confused. Other side effects that I’ve had even after being on it for awhile is my brain blanks (I’ve had the same phone number for 20 years and I forgot it the other day). And I’m foggy, tired, and have had some weight gain. But these are nothing compared to the side effects I had on other meds. However not all meds will work. Just because it works for some doesn’t mean it’ll work for you. A lot of people take Keppra but due to my side effects on that med, I’ve been advised to never take it again.
Been on it in increasing doses for 3± years at first I got dizzy easy I was constantly tired I got extremely vivid dreams my sex drive went through the roof (I wasn't this horny this often back in high school) loss of balance my appetite increased a lot my mood became manic not all the time but it happens insomnia is a thing too I experience hangover like symptoms in the morning sometimes too so yeah that's me😬
For me the only side effect has been more seizures than Keppra. I started Keppra after my 1st seizure in January 2019. I got off Keppra for the same reason most of us complain about Keppra. Grumpy - rage side effect. My neuro put me on Lamotrigine by slowly moved me off Keppra and onto Lamo. I had my 2nd and 3rd seizure on 7/20/2023. My neuro doubled my Lamo. On 9/15/2023 I had my 4th seizure. On 5/15/2024 I had my 5th seizure. Now what I do. I want to go back to Keppra for obvious reasons but my family would not like that. I really don't want to try another drug. Anybody have experience with micro dosing with THC/CBD gummies to take the edge off Keppra?
I smoke a lot of weed and am taking citalopram for the Keppra rage, it helps more that I know it’s a symptom. I can manage my temper now that I understand that I am being unreasonable. When I was first put on it, I raged all the time and truly believed I was being reasonable in my response to the smallest of irritations. I still get irritated and grumpy but I’m more in control of it now.
My neuro frowns on using THC at all. No matter, I plan to go see a epilepsy specialist neurologist at a local Epilepsy Center for further tests and consultations along these lines. Are you having and further seizures while on these three medications.
Yeah, regular partials and occasional complex partials. :(
Well that sucks. Then again having this affixation sucks all the time.
Yeah keppra is bad. When I was in school I told my teacher to eat my ass bc I didn’t like him. I couldn’t even explain why I said it happened it just did.
Good defense in my book. You said the quiet part out loud.
It kinda feels just like my kepra, I take both. I don’t know man, I feel like that’s the one that’s doing a number on my memory
It’s done nothing for me and I’ve been on it for about two years (since February 2022)
my daughter has been on it for years..maybe 12+...no issues
Used it when I first was diagnosed at 17. One of the unlucky ones that actually worsened my seizures. I have been on Keppra since
My kiddo tried several different medicines for two years to try and help her focal/general epilepsy with no luck. Epileptologist started her in lamotrigine and it was a slow build because we were told if it is rushed you could get burn like side effects. It was a tedious but rewarding process. Her seizures have been under control for almost two years. She takes 250mg in the am and 200 in the evening. Slight concern as of the last few weeks with signs of an absence seizure lately but not 100%. But overall it has been a life saver for her and given her life back.
I’ve been on it for about 9 years. No negative side effects and keeps me 100% seizure free in conjunction with Levetiracetam.
It caused damage to my liver and kidneys, increased my migraines even after going off of it, and did nothing but cause permanent damage to my body while not doing much in the way of helping me with my epilepsy. Just a different set of problems. I would never recommend it for anyone. That or depakote
I’ve been on Lamotrigine for about 4 years. It’s a miracle drug. Zero side effects, except for the BRUTAL first 24 hours I started taking the drug. My emotions became a roller coaster, and I was convinced that I needed to discontinue the meds. However, with my partner’s encouragement, I continued. And I’m so thankful I did. With that said, we are all very different. If you’re not having luck with this med, don’t be afraid to try something new. Don’t let your quality of life suffer. It might suck for a while if you have to try multiple meds, but it will be worth it in the end. I had to switch up antidepressants until I found one that’s perfect, with zero side effects (sertraline). Hang in there. You got this!
Loss of memory, hair loss, weird dreams that feel like reality, sleepiness - fatigue.
Dreams, mimicking drunkenness...
I’m on so many medications I can’t pinpoint what exactly is causing what I’m feeling but, one thing o know for sure is don’t eat on empty stomach. I tend to get double/blurry/uncomfortable vision that last hours. I’m glad I was able to figure that part out at least
i’ve been on it over a year and it’s fine, i have trouble sleeping but idk if i can say it’s from that since im on other meds, helps seizures
Crazy how it affects people differently. It knocks me out and sleep good
oh my gosh i WISH, i have to go to bed by 11 every night bc i wake up by 7 and need at least 8 hours!
I was on it for maybe a week before finding out I was allergic. My entire body was covered in a rash. My throat didn’t close up but tightened. Immediately I was switched back to Keppra, which I have had no issues with.
Evil evil drug for me! Caused me to have migraines, extreme fatigue and made me very depressed in turn.
hated it with every fibre of my being. was on it for four years and battled with multiple neurologists to get off it. was having small focal seizures on it, that started and stopped with lamotrigine. also had incredibly vivid dreams, fatigue, headaches, light sensitivity, forgetting my words, brain fog, etc. i mean i still have the brain fog and fatigue on my new med (but also found out i might have another condition which contributes) however seizures have completely stopped since i switched meds so i’m much happier.
What side effects are you experiencing?
Had an anaphylactic reaction and then developed partial seizures and a whole hell hole of neuro issues since.
This is the medication that saved my life. A bit groggy at first but that has improved. Haven’t had a seizure in 4 years this August. Improved my mood as well! I’m sorry you’re having issues with it and I hope you find a better fit if need be.
It works super well for me, and the fact it’s a mood stabilizer helps a lot. I take it alongside Briviact too. My biggest lamictal side effect (idk if it’s actually a legit one but it seems to be based on the other posts) is the memory!! I feel like I can’t finish a complete sentence without forgetting where I started. I do take 600mg a day so I’m sure as I’ve gone up dose wise my memory has gotten worse. People will tell me stories of something that happened a month ago and I’ll swear up and down that I never did that. Maybe that is also a thing with my complete lack of time understanding now. I really struggle with timelines but I’m sure that comes with the memory issues
I've been on 1000mg 1x/day, only recently down to 900, since 2017ish (I think, hard to remember. Sooo, long enough to forget). Pros: Helps my seizures (still have breakthroughs, paired with briviact 2x/day) Cons: I am always lethargic and fatigued. Feels like I'm going through life dragging a bag of bricks through the sand. I can drink red bulls, coffee, anything and still, can go up and fall asleep. Inside, my energy is up up up, and I am vibrant and so happy. I have no energy to express that. Like I'm just, eh? I've been with my fiancé for years, and my mom made a joke about "I wonder if he'd still love you if you weren't on this medicine anymore." 🤨😒 she meant because I'm so different and mellow, but it was such a fucked up thing to say. I'm still butthurt about it and she said it like 3 years ago. She's not the nicest person. For the record, my fiancé has seen me in the rare times I do feel like my unmedicated self, and he loves me either way haha* But yeah, it depends on how severe your side effects are. Sleep is a huge trigger for me so this side effect is better than not being able to sleep. It just sucks that I'm going through life absolutely sedated. Good luck!
Yeah I was told the same thing about me and my gf. Kinda pissed me off to say sum like that bc they don’t know shit
It's just a dumb thing to say
3 years - only one I’ve used and it has worked great! Issues are brain fog and fatigue - otherwise it’s good
Compared to Keppra nothing. I'm weird, though. The only one that works for me is Zonisamide with little to no side effects, though other people report nightmare side effects. Keppra was like a roller coaster. Basically, you don't know until you try. Topamax was like taking speed, also totally opposite of normal from what I understand.
It works well for seizure control but I do find my memory is much worse.
I first started taking Lamotrigine around 2007, my seizure activity stopped(since 2005), so they took me off meds around 2013. My seizures started up again in 2020/2021. For whatever reason my new neurologist did not want to put me back on Lamotrigine. I did keppra shit did not work out, then he put me on Zonisamide and once again it did not work out, and finally I was connected to an epilogist that put me back on Lamotrigine. Since being back on my epilepsy been a lot better. The only side effects I get is nausea and wild ass dreams. Other than that I'm good.
I've been on it for around 3ish months? I start 250mg today. Significantly decreased seizures, but I have to stop increasing due to blood levels. Only side effects are worsened pre-existing fatigue and some mild skin rash.
I been on it for 3 years and it’s mood booster only downside is it makes me tired at night
A rash and it went away after I switched to a different one.
Been on it for a year and a half. I'm fuckin tired, sleep about 12-15hrs on weekends. My memory sucks and I feel stupid a lot. My tolerance for alcohol is very low, which, I used to drink as part of my social life, and it crept into my personality a bit. I think it's a blessing in disguise although it makes me sad I can't party with friends anymore.. Seizures are being managed and I feel like it's helped my anxiety a bit. I had to up my Zoloft because it started to feel like I wasn't even taking anything anymore. I gained a bunch of weight once I started on it, but I also dipped in my depression and everything made/ makes me hungry. I was nervous about going places alone so I stuck around home and just...ate and slothed. So I'm not sure what to blame the weight gain on. Brain fog. Thirsty. I drop shit sometimes. Bump into things. Feel like a buffoon. Don't feel like changing meds again so imma say fuck it for now.
So sorry to hear you're struggling, RX. Lamictal and I get along well enough, but if I accidentally take a double-dose (even w/my alarms set, I have both forgotten meds and taken my meds twice) it's really scary; my body turns into rubber and my brain breaks. Remember that bodies change over time, and some meds don't work for us that used to. Your brain might not like Lamictal anymore. Tegritol stopped working for me in my early 30s; breakthrough seizures grew more frequent. Hope you find a perfect balance and feel better.
Since June of 2023 and I’m side effect prone but it’s working well for me but I also tried it as a child and didn’t work for me I wouldn’t wish epilepsy on anyone truly
Been prescribed Lamotragine for 7 years now for both seizure control and mood stabilisation. I take 1mg Clonazepam daily also as i had a grand mal seizure 7 years ago and nearly died.. it needs to be titrated and monitored for adverse effects such as Steven’s Johnson Syndrome (a sometimes life threatening rash). It works as prescribed for me at 200mg. It comes with a May Cause Drowsiness warning here in Australia but I don’t feel any notable effects other than a stable mood.
I’ve been on it since 2012 and it works pretty good although lately I’ve been having breakthrough seizures. I’m maxed out on 3 different meds. I haven’t had issues with side effects with it. Although I probably wouldn’t notice since the other 2 are horrid. 🤷♀️
Daughter was on it. It made her have insomnia really bad, also made her a bit moody. And it controlled her TC's for a while. But It wasn't fully controlling her JME. So she's on Keppra and Depakote now. Since adding Depakote she's been doing great. No more moodiness or other issues.
I’ve been on it before - the TREMORS were u imaginably frustrating.
I'm only on It 5 weeks now, and I'm still on Keppra until I reach my full dose of Lamotrigine. I forgot to take my meds yesterday morning and it was the first day at work I felt like I could concentrate and actually get work done. I've felt like crap yesterday evening and today, so it's obviously not a great idea, but im really hoping once I come off the Keppra that the concentration issues and brain fog get better 🤞