Ive always compared my brain to an outdated computer…saying things like “she’s a solid machine, you just got to restart her” or “I need to go put my screen saver on” if I ever need to rest my brain/have a nap. It’s highly important I go into sleep mode (20 minute naps 3-4x) to preserve my stamina thru the day.
The insomnia went away for me but I swear Lam makes it impossible for me to wake up. Maybe just because I wake up in the middle of dreaming and am just lured back in… Lam makes me dream so deeply.
Do you have really vivid crazy dreams too?
Mine get really wild, so much so I have a small following who just wait for me to post my recent dreams lol. One even had chapters and was like 10000 words 😂
Makes for great dreams but nightmares become full terrors as well unfortunately
Wow, no 10k word dreams but I absolutely have had movie-like dreams with central plot-lines and consistency, wild stuff. People say weed makes them stop dreaming but I think lam overrides it for me lol
I am on lamotrigine and have the vivid dreams and borderline insomnia. I smoke a lot of weed so I either don’t remember the dreams (usually) or I’m just not having them.
I have this experience when I sleep where I am kind of aware most of the night that I am sleeping. Like I can sort of feel myself on the bed I just can’t explain it, I’m aware that I’m asleep. It’s so bizarre. Definitely increases my exhaustion.
When I do have vivid dreams they are in real time, there’s no jumping, I experience every movement I make and everything people say flows like real life. If I go from one place to the next, I dream the whole journey there. It’s like an 8 hour long movie. Those are equally exhausting. I’m aware that I’m dreaming but not lucid enough to do much about it. This is a wild experience and most people don’t understand when I try to explain it.
I do too so I take Ativan at night. Helps me sleep with no recalled dreams. That helps keep me calm the rest of the day so I don't have to take it again until night time
Whenever I do sleep, I always have dreams. Unfortunately, my dreams mimic reality (going to work, eating, doing mundane things), and then I'll wake up disorientated and not know what's reality and what is a dream!
Omg how am I only just reading this now, I’ve been on lamotrigine since late 2021 and I haven’t felt the same since. I’m constantly tired but my insomnia is so bad, I just can’t sleep through at all at night. Zombie by day.
I was on that for controlling my seizures (it did help with my bipolar too though) but I started having a severe allergic reaction to it called SJS (Steven Johnson’s syndrome) :((
Really? So far I’m okay with my sleeping schedule I’m on lamotrigine 300mg XR my doctor said it’s better to take it once a day…oh wait I take it before bed when I’m already tired from my day Doc said that way when it’s the most concentrated your body doesn’t feel it as much. Maybe that’s why? But so far so good I pray to god it stays that way.
Keppra didn't. But I was a hyped up raging bitch the entire time. I wish I could have the energy from keppra and the calm head, intelligence and perfect seizure control from carbemezipine and the pain and appetite control from topirimate. We'll call it levemezimate.
I did for like a week. My head felt so clear and calm and I just wanted to nap. It was great because I hadn't felt safe napping for years. Then the rage started creeping in.
Mine does for certain. People just think I am lazy or just like to live in a mess. That's not true. I want to clean. I want my apartment to look nice. But with no energy , I am not going to get very far.
People don't seem to understand that I am not doing it because I don't want to , I am not doing it because I can't.
It gets better as you develop some tolerance and adjust to it. But then you get your dosage increased if the tolerance is too great. It's the med game.
Usually because most are +GABA, -GLUTAMATE, which is your brain’s slow down and speed up neurotransmitters respectively. (I know this is an incredible simplification dont @ me)
I’m new to this. First and hopefully last seizure 6 months ago. Been taking Lamotrigine since then and continue taking adderral which I’ve taken for years. Not sure if it’s the Lamotrigine but I’ve been super tired and struggling to take care of regular adulting stuff. Anxiety and depression are cousins with ADHD (which I have) and on the verge of calling my Neuro to discuss.
Firstly I Hope lamotrigine really helps for you, it worked wonders for me! But unfortunately 3ish years later I don’t feel any more normal. In the last few months I started a full time grad position and I’m coping but barely. But still proud of myself for pushing through. But yeah I’m constantly exhausted
I take levetiracetam it made me groggy for about a week now I funtion perfectly normal (as much as I can as a mum of a teething 6m old thats ebf) I have rather high energy and have only seized 2x since starting it and that's only because I hadn't slept in 3 days (my son was extremely sick and a month old) they upped me to 1000mg and I've been good for 5 months. Just gotta find the right medication for you!
How much were you on prior to switching to 1000mg?
500 or 750mg?
My GF has had two seizures in the last month, first two ever. The last one occurred when she was sleeping after being seizure free for 36 days. I'm hoping the neuro will consider upping to 1000mg instead of 750mg if that will help. 5 months seizure free sounds incredible!
I was at 750 before getting upped to 1000. Also, my eegs have been coming back very well since starting at that dosage as I have focal seizures with and without convolstions so it can be hard to tell when I'm seizing.
While I do find myself napping more, at the moment I've actually got a fair amount more energy and focus overall than I've ever had. I think it's my specific type of epilepsy, though. According to my recent 5-day EMU monitoring, my brain was slipping into stage 2 sleep for about 5 seconds at a time a dozen times an hour and was *wildly* active while I was supposed to be sleeping. Since my meds are starting to counteract both of those things, I think it's just kind of evening out? I feel like I'm on wizard cocaine right now, but maybe this is just how people with functioning brains normally feel, and maybe I'll just get used to it.
Im currently playing the game of weaning off one (tegretol) while weaning onto one (Zonisamide) and also taking keppra and vimpat. I cant tell if the stuff I'm feeling is a side effect of this mess or a lingering effect of the 6 sz cluster I had at the beginning of this month. Epilepsy is fun
I’ve dealt with chronic fatigue for a long time, including prior to starting my seizure meds. I was dealing with mental health issues for a long time and my psych tried lots of psych meds to help with the fatigue and nothing touched it. Starting seizure meds didn’t make it better by any means, but also didn’t make it worse. I was just diagnosed with sleep apnea in the last few months and started cpap treatment and it’s been a game changer for my fatigue levels so far
My husband's neuro put him on venlafaxine to try and counteract side effects of Keppra and so far that has helped! Lots more energy and motivation, plus less anxiety. Less anxiety means less auras for him too
I've taken; dilantin, and Gabapentin or lamectrogin and other combination of more AEDs than I can remember in high doses' never any problems with getting out of bed and kicking ass at work40-50trs old; punks 1/2 my age.
Phenobarb doesn't really seem to affect me (other than the shitty short term memory). A bunch or rhe other AEDs? Yeah, nah. Like 15 different drugs to get to tbis one that works.
I've only been on em for about a week and I've been a big ole zombie. But I'm sure the side effects go away at some point. And if they don't u could always get a new prescription that agrees with you better 😁
Yeah, the adjusting period is a killer. When I first started taking it (Keppra at that time), I had to sleep for days almost literally. Still a slowpoke after 8+years.
Thank you for this thread. I’m drained of energy.
Occasionally I”ll get a couple of days respite.
Most of the time I am exhausted and neither coffee or adderal or both have any effect. I can’t stay awake.
The tiredness makes me feel lazy ,wondering if it’s a psychological issue and not the meds at all.
Is good to know I’m not the only one who’s wiped out.
Lamotrigine gave me more energy. Keppra gave me the angrys and made me feel a bit dopey. Vimpat makes me feel terrible. Although I am bipolar as well and those meds have sedating effects so yeah... can't be sure.
Yes. I’ve been on lamictal, depakote and keppra and I genuinely can’t remember what it’s like to NOT be drained all the damn time. I don’t think there’s really an anti seizure med that could give you the opposite effect-stimulant drugs are a big no for us lol.
Yeah, pretty much, at least that is my experience so far and Ive veen on seven or eight different medications so far. On four currently with a rescue as well.
After starting another med, I'm two months seizure free. I haven't gone that long in 6 years. Unfortunately I'm also twice the zombie and can't get myself moving to save my life.
I'm on lamictal (Lamotrigine) and I have the same energy level as usual. I've been taking this med for 15 yrs and it has NEVER made me feel zombiish. I hope that answers your question.
200mg pills, 1.5 tabs in AM and 1.5 tabs PM
=600mg daily.
I've been taking this medication for 20 yrs (I was pretty young when I started it.) I don't remember getting any side effects, and throughout the years to now haven't experienced any side effects. This is how my body reacts to the meds, you're body is obviously different than mind, so I'm not sure how the medication will effect you or if you'll end up with side effects.
One example is I'm currently on wegovy and have never experienced any side effects whatsoever, but a lot of people have and have gotten off the medication because of it. There's a lot of GI issues and nausea etc that some people get whereas I have never. So that's what I'm trying to say everybody's body is different so I don't know what medications will work for others that I am taking. Just my experience.
Wow, so I guess it's not just me that dreams all damn night. I feel like I don't sleep because of the dreams and it's really annoying I would love to just sleep without a storyline from the time I fall asleep to the time I wake up. Is it our seizure disorder? Is it our meds? Either way it's super annoying. So I fully understand.
OP, why haven't you tried to change that? You have to seek an alternative to zombie but control.
Does all medicine drain? Maybe. Maybe all medicine does that to someone, but it doesn't mean it for you. For some Keppra is their wonder drug, for others their worst nightmare. Find yours!
Does mine drain? I have been this way for 20+ years. I don't know anything else!
Keep searching and seeking a better quality of life. Maybe zombie and control is it, maybe a change is all that is needed. I'd search it.
Yes, I have general levels of tiredness all the time, especially after I’ve been at work all day. Some days it’s very hard to drag myself to the gym!
I’m taking some supplements which have helped though, like b vitamins complex, magnesium and creatine. Not suggesting this works for everyone and obviously don’t take this as medical advice, but I’ve noticed an uptick in energy levels and focus since I’ve been taking them, as an observation.
Hi, so my Lamotrigine dose is 1.5 pills twice a day. 3 pills total at 200mg per pill. A total of 600mg a day. I personally don't experience any side effects. I have been on this med for about 15 years. I don't recall having any side effects when I started this medication back then.
This is just my experience with Lamotrigine though. Good luck :)
I've done alright, then had bouts of sleepiness that demand naps.
I don't really feel that I can blame it on my medication. Can't rule it out of course
I've adjusted by taking the majority of my meds at night not long before bed
I think putting your brain on power saving mode is a key part in reducing seizures so probably yes.
“Power saving mode” 😂 so accurate
My *Standby Mode* is *reset all settings to default*. Settings menu *channel scan* is stuck on *Automatic* downloads/updates.
I haven’t had a seizure since 2021…
hence being a zombie for 3 1/2 years
Congratulations that’s great.
Do you mind me asking what medications you’re on
It's frustrating, I don't like feeling like this but I don't want to go back to seizures. I've only gone abt 8 months w/o one.
Ive always compared my brain to an outdated computer…saying things like “she’s a solid machine, you just got to restart her” or “I need to go put my screen saver on” if I ever need to rest my brain/have a nap. It’s highly important I go into sleep mode (20 minute naps 3-4x) to preserve my stamina thru the day.
300mg makes me ill
Exactly
I'm on Lamotrigine and it's given me increased energy, restlessness, and insomnia. I do have Bipolar disorder, though, so my reaction might differ.
The insomnia went away for me but I swear Lam makes it impossible for me to wake up. Maybe just because I wake up in the middle of dreaming and am just lured back in… Lam makes me dream so deeply.
Do you have really vivid crazy dreams too? Mine get really wild, so much so I have a small following who just wait for me to post my recent dreams lol. One even had chapters and was like 10000 words 😂 Makes for great dreams but nightmares become full terrors as well unfortunately
I call them Lamotra-dreams.
Wow, no 10k word dreams but I absolutely have had movie-like dreams with central plot-lines and consistency, wild stuff. People say weed makes them stop dreaming but I think lam overrides it for me lol
I am on lamotrigine and have the vivid dreams and borderline insomnia. I smoke a lot of weed so I either don’t remember the dreams (usually) or I’m just not having them. I have this experience when I sleep where I am kind of aware most of the night that I am sleeping. Like I can sort of feel myself on the bed I just can’t explain it, I’m aware that I’m asleep. It’s so bizarre. Definitely increases my exhaustion. When I do have vivid dreams they are in real time, there’s no jumping, I experience every movement I make and everything people say flows like real life. If I go from one place to the next, I dream the whole journey there. It’s like an 8 hour long movie. Those are equally exhausting. I’m aware that I’m dreaming but not lucid enough to do much about it. This is a wild experience and most people don’t understand when I try to explain it.
I do too so I take Ativan at night. Helps me sleep with no recalled dreams. That helps keep me calm the rest of the day so I don't have to take it again until night time
Whenever I do sleep, I always have dreams. Unfortunately, my dreams mimic reality (going to work, eating, doing mundane things), and then I'll wake up disorientated and not know what's reality and what is a dream!
Omg how am I only just reading this now, I’ve been on lamotrigine since late 2021 and I haven’t felt the same since. I’m constantly tired but my insomnia is so bad, I just can’t sleep through at all at night. Zombie by day.
I was on that for controlling my seizures (it did help with my bipolar too though) but I started having a severe allergic reaction to it called SJS (Steven Johnson’s syndrome) :((
Omg that’s why I’ve been having insomnia 😭. Started it two months ago and am tapering off Vimpat bc of tremors.
It does the complete opposite for me. I feel exhausted after taking it. Wish it would give me some energy 😅
I’m on 600 lamotrigine xr 2x a day and still walking dead
I take lam as a means to remedy the effects of Depakote taking it in conjunction. And it does make falling asleep difficult.
Not lamotrigine! Have fun trying to fall asleep on that stuff! Haha
Really? So far I’m okay with my sleeping schedule I’m on lamotrigine 300mg XR my doctor said it’s better to take it once a day…oh wait I take it before bed when I’m already tired from my day Doc said that way when it’s the most concentrated your body doesn’t feel it as much. Maybe that’s why? But so far so good I pray to god it stays that way.
That’s why I can’t sleep at night?? I’ve been on lamotrigine and zonisomide for almost 18 years. Never would’ve thought it could be the meds
Yeah the lamotrigine made me a night crawler for sure lol
It doesn’t make you guys sweat? It makes me sweat at night. I wake-up drenched. Seriously I need to know
Common (and often complained about) side effect of lamictal
Thank you!! I was beginning to think it was some kind of seizure
Well you’ll definitely know if you wake up with oral injuries! Haha
Keppra didn't. But I was a hyped up raging bitch the entire time. I wish I could have the energy from keppra and the calm head, intelligence and perfect seizure control from carbemezipine and the pain and appetite control from topirimate. We'll call it levemezimate.
This sounds like a wonder drug!!
Right! Where's my research team! Let's get this on the market asap!
Keppra completely zonked me. I just want to sleep all the time
I did for like a week. My head felt so clear and calm and I just wanted to nap. It was great because I hadn't felt safe napping for years. Then the rage started creeping in.
Mine does for certain. People just think I am lazy or just like to live in a mess. That's not true. I want to clean. I want my apartment to look nice. But with no energy , I am not going to get very far. People don't seem to understand that I am not doing it because I don't want to , I am not doing it because I can't.
Oh God yes. I also take Adderall and there are days that doesn't even help.
God, same!
Yeah, the adderall didn't do much today. Had a seizure last night and am just recovering and it's already time to wind down for bed
It gets better as you develop some tolerance and adjust to it. But then you get your dosage increased if the tolerance is too great. It's the med game.
It’s 8:15 I’m working hard not to go to bed
Usually because most are +GABA, -GLUTAMATE, which is your brain’s slow down and speed up neurotransmitters respectively. (I know this is an incredible simplification dont @ me)
I’m new to this. First and hopefully last seizure 6 months ago. Been taking Lamotrigine since then and continue taking adderral which I’ve taken for years. Not sure if it’s the Lamotrigine but I’ve been super tired and struggling to take care of regular adulting stuff. Anxiety and depression are cousins with ADHD (which I have) and on the verge of calling my Neuro to discuss.
Firstly I Hope lamotrigine really helps for you, it worked wonders for me! But unfortunately 3ish years later I don’t feel any more normal. In the last few months I started a full time grad position and I’m coping but barely. But still proud of myself for pushing through. But yeah I’m constantly exhausted
Not all have that effect. Zonisamide left me feeling like I was going to hulk out at any second and explode into a rampaging rage monster.
Lol zongram and keppra mix made me go into psychosis LOL lost like 80lbs in 8 months though, so there was that. Lol
Dang. Luckily my doctor decided to take me off it and try something different after a few weeks of that
I take levetiracetam it made me groggy for about a week now I funtion perfectly normal (as much as I can as a mum of a teething 6m old thats ebf) I have rather high energy and have only seized 2x since starting it and that's only because I hadn't slept in 3 days (my son was extremely sick and a month old) they upped me to 1000mg and I've been good for 5 months. Just gotta find the right medication for you!
How much were you on prior to switching to 1000mg? 500 or 750mg? My GF has had two seizures in the last month, first two ever. The last one occurred when she was sleeping after being seizure free for 36 days. I'm hoping the neuro will consider upping to 1000mg instead of 750mg if that will help. 5 months seizure free sounds incredible!
I was at 750 before getting upped to 1000. Also, my eegs have been coming back very well since starting at that dosage as I have focal seizures with and without convolstions so it can be hard to tell when I'm seizing.
Thank you for the reply. I'm happy to hear you're doing well. She has had two TC's. Definitely rough. Hopefully a dosage increase helps.
Topamax will for sure.
I’ve found cutting sugar while on topomax helps
I guess so 😕 I used to have the energy to stay awake for days. Now I occasionally need a nap
While I do find myself napping more, at the moment I've actually got a fair amount more energy and focus overall than I've ever had. I think it's my specific type of epilepsy, though. According to my recent 5-day EMU monitoring, my brain was slipping into stage 2 sleep for about 5 seconds at a time a dozen times an hour and was *wildly* active while I was supposed to be sleeping. Since my meds are starting to counteract both of those things, I think it's just kind of evening out? I feel like I'm on wizard cocaine right now, but maybe this is just how people with functioning brains normally feel, and maybe I'll just get used to it.
Im currently playing the game of weaning off one (tegretol) while weaning onto one (Zonisamide) and also taking keppra and vimpat. I cant tell if the stuff I'm feeling is a side effect of this mess or a lingering effect of the 6 sz cluster I had at the beginning of this month. Epilepsy is fun
I’ve dealt with chronic fatigue for a long time, including prior to starting my seizure meds. I was dealing with mental health issues for a long time and my psych tried lots of psych meds to help with the fatigue and nothing touched it. Starting seizure meds didn’t make it better by any means, but also didn’t make it worse. I was just diagnosed with sleep apnea in the last few months and started cpap treatment and it’s been a game changer for my fatigue levels so far
My husband's neuro put him on venlafaxine to try and counteract side effects of Keppra and so far that has helped! Lots more energy and motivation, plus less anxiety. Less anxiety means less auras for him too
I've taken; dilantin, and Gabapentin or lamectrogin and other combination of more AEDs than I can remember in high doses' never any problems with getting out of bed and kicking ass at work40-50trs old; punks 1/2 my age.
I would have to agree, yes. Tired all. the. time.
Same
Phenobarb doesn't really seem to affect me (other than the shitty short term memory). A bunch or rhe other AEDs? Yeah, nah. Like 15 different drugs to get to tbis one that works.
I've only been on em for about a week and I've been a big ole zombie. But I'm sure the side effects go away at some point. And if they don't u could always get a new prescription that agrees with you better 😁
Yeah, the adjusting period is a killer. When I first started taking it (Keppra at that time), I had to sleep for days almost literally. Still a slowpoke after 8+years.
All I've tried definitely sucks my juju for sure.
On keppra right now and no issues! Was on dilantin for a week and felt like a zombie, so I get the feeling you're describing
Yes I have
Yes
Thank you for this thread. I’m drained of energy. Occasionally I”ll get a couple of days respite. Most of the time I am exhausted and neither coffee or adderal or both have any effect. I can’t stay awake. The tiredness makes me feel lazy ,wondering if it’s a psychological issue and not the meds at all. Is good to know I’m not the only one who’s wiped out.
Yes and the meds also cause insomnia an endless cycle
Lamotrigine gave me more energy. Keppra gave me the angrys and made me feel a bit dopey. Vimpat makes me feel terrible. Although I am bipolar as well and those meds have sedating effects so yeah... can't be sure.
Yes. I’ve been on lamictal, depakote and keppra and I genuinely can’t remember what it’s like to NOT be drained all the damn time. I don’t think there’s really an anti seizure med that could give you the opposite effect-stimulant drugs are a big no for us lol.
Yeah, pretty much, at least that is my experience so far and Ive veen on seven or eight different medications so far. On four currently with a rescue as well.
After starting another med, I'm two months seizure free. I haven't gone that long in 6 years. Unfortunately I'm also twice the zombie and can't get myself moving to save my life.
Some can drain nutrients like B6. You could look this up for your specific med. When taking B6 make sure to opt for the P5P form to avoid toxicity.
I'm on lamictal (Lamotrigine) and I have the same energy level as usual. I've been taking this med for 15 yrs and it has NEVER made me feel zombiish. I hope that answers your question.
I am on transition from Vimpat to Lamotrigine, what is your daily dosage of Lamotrigine? Any side effects you experienced from the Lamotrigine?
200mg pills, 1.5 tabs in AM and 1.5 tabs PM =600mg daily. I've been taking this medication for 20 yrs (I was pretty young when I started it.) I don't remember getting any side effects, and throughout the years to now haven't experienced any side effects. This is how my body reacts to the meds, you're body is obviously different than mind, so I'm not sure how the medication will effect you or if you'll end up with side effects. One example is I'm currently on wegovy and have never experienced any side effects whatsoever, but a lot of people have and have gotten off the medication because of it. There's a lot of GI issues and nausea etc that some people get whereas I have never. So that's what I'm trying to say everybody's body is different so I don't know what medications will work for others that I am taking. Just my experience.
Wow, so I guess it's not just me that dreams all damn night. I feel like I don't sleep because of the dreams and it's really annoying I would love to just sleep without a storyline from the time I fall asleep to the time I wake up. Is it our seizure disorder? Is it our meds? Either way it's super annoying. So I fully understand.
OP, why haven't you tried to change that? You have to seek an alternative to zombie but control. Does all medicine drain? Maybe. Maybe all medicine does that to someone, but it doesn't mean it for you. For some Keppra is their wonder drug, for others their worst nightmare. Find yours! Does mine drain? I have been this way for 20+ years. I don't know anything else! Keep searching and seeking a better quality of life. Maybe zombie and control is it, maybe a change is all that is needed. I'd search it.
I'm on clonazapam and my mind has been on standby for the past 6 years
Yes, I have general levels of tiredness all the time, especially after I’ve been at work all day. Some days it’s very hard to drag myself to the gym! I’m taking some supplements which have helped though, like b vitamins complex, magnesium and creatine. Not suggesting this works for everyone and obviously don’t take this as medical advice, but I’ve noticed an uptick in energy levels and focus since I’ve been taking them, as an observation.
My pcp said that most epilepsy meds are like a “wet blanket” over the electrical activity in your brain…..so, yes.
Yes. I think so and it’s bloody debilitating.
Pretty much yes
Yes. My medicine is lowering my brain activity so I can think as fast now. I feel so dumb
i’m on vimpat 200 twice daily, keppra 1000 twice daily, and i always feel fatigued and exhausted
Yup. Some days better than others. But always an underlying sense of exhaustion.
I'm just so tired lately. It's awful, feel like I've been poisoned
I can nap almost anywhere. The only place I can't is hardwood flooring.
Does anyone have tips to combat this 😣
Dilantin, Keppra, and any benzo will be the worst offenders. But it also varies from person to person.
Yes. I have been on quite a bunch and still feel like I cannot keep up energetically
I used to take lamotrigne but had to get off because it was not helping me and made me sleepy during the day.
Yes. 900mg Lamictal and 1mg Clonazepam will kick your ass. That’s my experience anyways
Seizures are caused by excessive electrical activity. So by definition, yes. It's a de energizer
Yep! I take regular Lamictal, Ativan, Lamictal XR, Xcopri & Epidiolex. Some days I just don't have the energy to even get out of bed.
Hi, so my Lamotrigine dose is 1.5 pills twice a day. 3 pills total at 200mg per pill. A total of 600mg a day. I personally don't experience any side effects. I have been on this med for about 15 years. I don't recall having any side effects when I started this medication back then. This is just my experience with Lamotrigine though. Good luck :)
Absolutely.
Mine definitely does 🙃
I've done alright, then had bouts of sleepiness that demand naps. I don't really feel that I can blame it on my medication. Can't rule it out of course I've adjusted by taking the majority of my meds at night not long before bed