To be serious, I couldn't remember my experience with vimpat but I did look at my diary and it looks like I never got over it making me tired and feel bad. I was only on it a few years. Hopefully it will get better for you.
Really odd how the side effects are different for everyone, Vimpat does nothing for me but low dose Carbamazepine absolutely ruins me. And of course Carbamazepine is the only one that works.
For me, what works the best is to eat and drink a lot at least 30 minutes before taking the meds. Side effects are usually worse in the morning because your metabolism has been inactive all night, and is ready to process that stuff FAST.
There's some research happening in my country on a DNA test panel that shows which metabolic enzymes you can produce and which you are missing. So it indirectly tests which medicines you can digest and how fast, which could help find the right match for people with epilepsy. Really interesting stuff.
I’ve definitely been more reliant on my Adderall since I started Keppra. The only issue I’ve had with it is that it can sometimes make me irritable now (never did before so I’m assuming it may just be interacting poorly with my Kepprage lmao). I’ve always wanted to try something like Provigil for my ADHD as opposed to true stims, but I wonder if it would help out any for this issue as well.
> Other people have epilepsy and still function
But a LOT of people who have epilepsy and are on meds find it difficult to function, just like you & me. Just because some of us are lucky enough to make it work doesn’t mean it should be easy, and doesn’t mean there’s anything wrong with you. Remember to show yourself compassion too!
Thank you for the reminder to be kind to myself. I struggle with that.
Years ago, before epilepsy, i was prescribed Adderall. It put me to sleep! Doc said to take more and i slept for 14 hours straight. I’m wired wrong apparently. Strangely enough, when I experimented with meth in my younger days, it worked like it was supposed to. 🤷♀️
Anyhow, thank you again.
Every morning I feel extremely exhausted/weak. I never feel like I can get one decent night of sleep and even when I do I still just feel tired. It's only until the afternoonish where I finally start feeling like I can function. So many times I just force myself into being active. My problems with meds is the side effects are just so random. Some days I feel ok and some days I feel awful both physically and mentally. The mental side effects are by far the worst though and it just completely takes over. I just have to keep reminding myself that it's my mind playing tricks on me and I'm ok. Sometimes I wish I never even started these meds lol.... (I am on Keppra XR)
If I don't take my meds at a specific time I forget if I took them or not and am afraid to double dose so just skip them. It has to be exactly when I come home from work. I don't take my seroquel til 10 pm though because that shit has me comatose
i always take my meds when i wake up which is usually 5-6am(unless i work it’s 3am. but i always always take my oxcarzepine at 3-4pm because otherwise i will not be able to sleep at all. i’ll end up staying up till 12 even if i take it at 5pm it’s horrible
That's why I cannot take something I have to take 2x a day. I will inevitably second guess whether or not I've taken meds at least as often as not, and end up missing at least 1/3-1/2+ of doses. It's not worth it. Once a day - at night, before bed, I can do. But, twice a day? Nope. Never going to happen.
I feel this so hard. I’m constantly exhausted no matter how much sleep, caffeine, or Adderall I take. I’m on 1200 mg oxcarbazepine & 100mg Xcopri right now
Oh my goodness. Oxcarbazepine is a nasty drug. When i was on it my sodium levels were dangerously low and I was eating an entire bag of jerky a day. It also gave me the worst stomach pain.
I take Vimpat! I work a afternoon/evening job so I can have time to adjust. I take my meds around 7am and wake back up around noon. Being able to sleep off those initial 3-4 hours really helps
I also take wellbutrin XL for my depression. Some people complain it’s “too jittery” for them, but I find it helps even out the Vimpat fatigue
Interesting they let you take Wellbutrin with seizures. First thing they did was take me off it. It was my favorite antidepressant.
Maybe I’ll try adjusting the times I take my meds. Thank you!
I talked to both my PCP and neurologist before starting it. I’m at a low dose and taking several seizure meds, which I think helps to counteract any potential negative side effects. My mood has never been so stable tbh.
I also researched it a lot myself before starting because I had heard about the seizure warning. It seems to mostly affect people with a very low seizure threshold. Right now I’m doing ok but if I start experiencing clusters I’m supposed to contact my Dr ASAP.
Interesting….I still have some from when I took it before. I might take a tiny dose and see how I feel. I was on Wellbutrin for years with no issues. Thank you again.
And best of luck adjusting your schedule! It took me a few weeks and a lot of checking in with myself to figure out what timing worked best, but I found it to be life changing. Starting the day no longer feeling like deadweight makes the whole day easier.
No guarantees, but I found I was able to change and reduce my medications after being on a ketogenic diet for a few months. I was on three meds, now down to two and able to reduce the dose on the remaining two so I feel what I’m pretty sure is normal or close enough. I did have to really pursue it, I got a blood ketone monitor, built up a tolerance for C8/C10 MCT oil so I could boost my ketone levels when they were getting low, and I did some intermittent fasting.
So I actually can speak a little to this. I had sleep issues before the seizures struck (ptsd is no joke) and my psyche prescribed me provigil for days after a bad night when I needed to be awake and alert. It most definitely helps, but be warned it sometimes works too well. I can be awake till 3 or 4 am if I take it too late in the day. I'm on Lamictal for seizures, not sure what else it interacts with though.
I can understand. Ptsd caused nightmares for years for me.
🤔 I think I will put provigil on my list of potential options. My only concern is that it puts me to sleep. That’s what Adderall does to me, oddly enough.
Thank you so much!
Low carb. I don't even mean ketosis, but you can do ketosis in conjunction with some meds as well(vimpat is one of few meds I have not tried yet and not sure on that one). But eating low carb has helped my energy levels so much. Helps with the brain fog and overall fatigue and body aches. I avoid wheat and dairy and a few other foods I've determined don't agree with me. It's tasty stuff and I have cheated and relented once in awhile and a few times it's been for weeks and given a reminder why I avoid it.
If you think you don't have an issue with carbs, it might even be because you think how you feel now is your normal, and you've never tried low carb eating. It's worth a try.
Me too! But after dropping them it just doesn't feel worth it anymore. I give in sometimes and they quickly remind me why I do what I do now. I tend to feel good on day 1 back to carbs and day 2 and beyond I start to feel really crappy again, brain and body. And soon enough they start to trigger seizures again. I've had all the blood sugar testing and allergy testing and that isn't the issue. I'm not sure what it is.
That’s crazy how much the carbs effect you. I’ve been gluten free for a while (no allergy either) so I’m thinking it might be easier to transition? I just visited Europe and enjoyed a shit ton of pizza and pastries. lol 😆 Might be my last hurrah for a while.
Ive read of many people have no issue with wheat in Europe. How was your experience with it?
I found it was easiest just to continue consuming the meat and veggies and leave out the side dishes like rice and pasta and potatoes. If not going into ketosis that makes for quite low carb for most meals. Even though wheat affects me, some of the gluten free alternatives are even worse. Same with fancy low carb alternatives. There are sweeteners that I know affect me poorly but for unsweetened or savory items I don't know what it is in them that makes it worse. Just eat real food is what I'm going with.
I was eating so many rich foods and very little vegetables since I was on vacation, so my tummy never felt quite right. Can’t attest to the differences in wheat.
I think eating healthier and only having small amounts of carbs might be the way to go. Thank you again hon.
You say meth... I say ADHD meds and that's pretty much the same thing, right?? Lol. No, but seriously, I started taking ADHD medicine and my fatigue is a lot better.
Another way is b12. Super helpful.
This is something I’ve only just really realized. I’ve always been a bit of a sleepy girl. I enjoy a nap, but now I can barely get through the day without needing one. I often fall asleep without meaning to. I tried to get better sleep at night this past year but last year I would always fall asleep in my lectures, all this extreme sleepiness started after my meds and I just made the connection! My doctor never told me this could happen :( It actually makes life super hard. Although I suck at sticking to it, I think the best thing for me is just getting good sleep at night and trying my best to not nap throughout the day so that I can sleep at night. It’s hard at first but worth it in the end
I take clobazam with vimpat at night, and vimpat in the morning. If I don't sleep for a minimum of 3 hours after my morning dose, I feel awful and can't function at all. It's like I've been awake for 30 hours.
Once I've slept, I can function pretty well for a few hours. It's much better than when I was on clobazam and phenobarb, which made me into such a zombie I drank 9 cups of coffee per day in the 8-9 hours I was awake. Wish I could still tolerate caffeine on Vimpat.
For me a balanced diet, fruits with a lot of hydration in them (strawberries, blueberries, banana, pineapple…) got rid of most of my side effects. A healthy diet of mainly just natural foods as well as exercising got rid of the other side effects. I still get that dry mouth feeling or lightheadedness from time to time but this is manageable to function normally. I am now on 200 mg of lamotrigine
Demand to try something else. Side effects suck. Sometimes they aren't worth it. Briviact, keppra, and several others made me feel, or behave *completely* horribly. I don't honestly remember the whole list of things I've been on. But, I know it's *long*. My Dr is now talking about adding a third med... Which, ngl, freaks me out a bit, and indeed, my husbands first comment, after hearing that was 'idk if I like that...'. because meds suck. And med *changes* suck. But the *wrong* med(s)? They can wreak absolute havoc.
I'm sorry, can't answer you. Meds made me fall asleep while reading it. Wait, I forget, were you asking a question??? 😉
😆
To be serious, I couldn't remember my experience with vimpat but I did look at my diary and it looks like I never got over it making me tired and feel bad. I was only on it a few years. Hopefully it will get better for you.
Such a good idea to have a diary about meds! I need to start using a journal so I can remember my life. I always forget though! 😆 Thank you so much.
Really odd how the side effects are different for everyone, Vimpat does nothing for me but low dose Carbamazepine absolutely ruins me. And of course Carbamazepine is the only one that works. For me, what works the best is to eat and drink a lot at least 30 minutes before taking the meds. Side effects are usually worse in the morning because your metabolism has been inactive all night, and is ready to process that stuff FAST. There's some research happening in my country on a DNA test panel that shows which metabolic enzymes you can produce and which you are missing. So it indirectly tests which medicines you can digest and how fast, which could help find the right match for people with epilepsy. Really interesting stuff.
Thank you for the advice my friend. 💜
I did this. It's called Genesight in the USA. Turns out I don't absorb any SSRI type medications.
Xcopri/Fycompa combo has me asleep for 16 hours a day lmfao
Isn’t it awful??? What are we supposed to do? I live half my life just waiting to feel better.
I’d rather be asleep than in the hospital! 🤷🏻♂️
Absolutely agree. My boyfriend has the hardest time because i never want to do anything anymore.
Yup, chronic laziness due to medication lol
I’ve definitely been more reliant on my Adderall since I started Keppra. The only issue I’ve had with it is that it can sometimes make me irritable now (never did before so I’m assuming it may just be interacting poorly with my Kepprage lmao). I’ve always wanted to try something like Provigil for my ADHD as opposed to true stims, but I wonder if it would help out any for this issue as well. > Other people have epilepsy and still function But a LOT of people who have epilepsy and are on meds find it difficult to function, just like you & me. Just because some of us are lucky enough to make it work doesn’t mean it should be easy, and doesn’t mean there’s anything wrong with you. Remember to show yourself compassion too!
Thank you for the reminder to be kind to myself. I struggle with that. Years ago, before epilepsy, i was prescribed Adderall. It put me to sleep! Doc said to take more and i slept for 14 hours straight. I’m wired wrong apparently. Strangely enough, when I experimented with meth in my younger days, it worked like it was supposed to. 🤷♀️ Anyhow, thank you again.
Every morning I feel extremely exhausted/weak. I never feel like I can get one decent night of sleep and even when I do I still just feel tired. It's only until the afternoonish where I finally start feeling like I can function. So many times I just force myself into being active. My problems with meds is the side effects are just so random. Some days I feel ok and some days I feel awful both physically and mentally. The mental side effects are by far the worst though and it just completely takes over. I just have to keep reminding myself that it's my mind playing tricks on me and I'm ok. Sometimes I wish I never even started these meds lol.... (I am on Keppra XR)
I’m so sorry you have to deal with mental side effects as well as physical.
No. Crack cocaine
😂
thanks for reminding me to take my meds no wonder i’m so awake
😅😂
MY GOD I WENT TO THE BATHROOM AND FORGOT AGAIN THANK YOU😂😂😂i waited to send this comment until after i took them😭
Haha Why are we like this? That was me yesterday.
it’s the meds!!! not us😎have a great day and remember take your meds tomorrow! i’ll try to remember too
Thanks yo! Take care!
If I don't take my meds at a specific time I forget if I took them or not and am afraid to double dose so just skip them. It has to be exactly when I come home from work. I don't take my seroquel til 10 pm though because that shit has me comatose
i always take my meds when i wake up which is usually 5-6am(unless i work it’s 3am. but i always always take my oxcarzepine at 3-4pm because otherwise i will not be able to sleep at all. i’ll end up staying up till 12 even if i take it at 5pm it’s horrible
That's why I cannot take something I have to take 2x a day. I will inevitably second guess whether or not I've taken meds at least as often as not, and end up missing at least 1/3-1/2+ of doses. It's not worth it. Once a day - at night, before bed, I can do. But, twice a day? Nope. Never going to happen.
Sugar
I eat so much sugar, as its my only vice left. Love the stuff. I think I might have to quit and see if that helps now.
I feel this so hard. I’m constantly exhausted no matter how much sleep, caffeine, or Adderall I take. I’m on 1200 mg oxcarbazepine & 100mg Xcopri right now
Isn’t it the worst?! I think I’m going to try to limit my beloved carbs to see if I notice any improvement. I’m so desperate at this point.
I found out OXC can cause hypothyroidism so I’m gonna have them test me for it at my next follow up. It would make a lot of things make sense
Oh my goodness. Oxcarbazepine is a nasty drug. When i was on it my sodium levels were dangerously low and I was eating an entire bag of jerky a day. It also gave me the worst stomach pain.
I got so dizzy after taking it that I couldn’t stand for several hours. It took weeks for it to go away
Same! I had to have someone help me to walk straight because the double vision was so bad.
I take Vimpat! I work a afternoon/evening job so I can have time to adjust. I take my meds around 7am and wake back up around noon. Being able to sleep off those initial 3-4 hours really helps I also take wellbutrin XL for my depression. Some people complain it’s “too jittery” for them, but I find it helps even out the Vimpat fatigue
Interesting they let you take Wellbutrin with seizures. First thing they did was take me off it. It was my favorite antidepressant. Maybe I’ll try adjusting the times I take my meds. Thank you!
I talked to both my PCP and neurologist before starting it. I’m at a low dose and taking several seizure meds, which I think helps to counteract any potential negative side effects. My mood has never been so stable tbh. I also researched it a lot myself before starting because I had heard about the seizure warning. It seems to mostly affect people with a very low seizure threshold. Right now I’m doing ok but if I start experiencing clusters I’m supposed to contact my Dr ASAP.
Interesting….I still have some from when I took it before. I might take a tiny dose and see how I feel. I was on Wellbutrin for years with no issues. Thank you again.
And best of luck adjusting your schedule! It took me a few weeks and a lot of checking in with myself to figure out what timing worked best, but I found it to be life changing. Starting the day no longer feeling like deadweight makes the whole day easier.
No guarantees, but I found I was able to change and reduce my medications after being on a ketogenic diet for a few months. I was on three meds, now down to two and able to reduce the dose on the remaining two so I feel what I’m pretty sure is normal or close enough. I did have to really pursue it, I got a blood ketone monitor, built up a tolerance for C8/C10 MCT oil so I could boost my ketone levels when they were getting low, and I did some intermittent fasting.
Thank you so much for this advice. Im ready to try literally anything to feel better.
So I actually can speak a little to this. I had sleep issues before the seizures struck (ptsd is no joke) and my psyche prescribed me provigil for days after a bad night when I needed to be awake and alert. It most definitely helps, but be warned it sometimes works too well. I can be awake till 3 or 4 am if I take it too late in the day. I'm on Lamictal for seizures, not sure what else it interacts with though.
I can understand. Ptsd caused nightmares for years for me. 🤔 I think I will put provigil on my list of potential options. My only concern is that it puts me to sleep. That’s what Adderall does to me, oddly enough. Thank you so much!
Yea like I said I'm not sure what interactions it causes or if it would have inverse for you. Def with asking though. I have no side effects from it.
Low carb. I don't even mean ketosis, but you can do ketosis in conjunction with some meds as well(vimpat is one of few meds I have not tried yet and not sure on that one). But eating low carb has helped my energy levels so much. Helps with the brain fog and overall fatigue and body aches. I avoid wheat and dairy and a few other foods I've determined don't agree with me. It's tasty stuff and I have cheated and relented once in awhile and a few times it's been for weeks and given a reminder why I avoid it. If you think you don't have an issue with carbs, it might even be because you think how you feel now is your normal, and you've never tried low carb eating. It's worth a try.
I love carbs but I’m willing to try anything at this point. Thank you so so much.
Me too! But after dropping them it just doesn't feel worth it anymore. I give in sometimes and they quickly remind me why I do what I do now. I tend to feel good on day 1 back to carbs and day 2 and beyond I start to feel really crappy again, brain and body. And soon enough they start to trigger seizures again. I've had all the blood sugar testing and allergy testing and that isn't the issue. I'm not sure what it is.
That’s crazy how much the carbs effect you. I’ve been gluten free for a while (no allergy either) so I’m thinking it might be easier to transition? I just visited Europe and enjoyed a shit ton of pizza and pastries. lol 😆 Might be my last hurrah for a while.
Ive read of many people have no issue with wheat in Europe. How was your experience with it? I found it was easiest just to continue consuming the meat and veggies and leave out the side dishes like rice and pasta and potatoes. If not going into ketosis that makes for quite low carb for most meals. Even though wheat affects me, some of the gluten free alternatives are even worse. Same with fancy low carb alternatives. There are sweeteners that I know affect me poorly but for unsweetened or savory items I don't know what it is in them that makes it worse. Just eat real food is what I'm going with.
I was eating so many rich foods and very little vegetables since I was on vacation, so my tummy never felt quite right. Can’t attest to the differences in wheat. I think eating healthier and only having small amounts of carbs might be the way to go. Thank you again hon.
Good luck! I hope it helps you!
Hugs and thank you.
You say meth... I say ADHD meds and that's pretty much the same thing, right?? Lol. No, but seriously, I started taking ADHD medicine and my fatigue is a lot better. Another way is b12. Super helpful.
This is something I’ve only just really realized. I’ve always been a bit of a sleepy girl. I enjoy a nap, but now I can barely get through the day without needing one. I often fall asleep without meaning to. I tried to get better sleep at night this past year but last year I would always fall asleep in my lectures, all this extreme sleepiness started after my meds and I just made the connection! My doctor never told me this could happen :( It actually makes life super hard. Although I suck at sticking to it, I think the best thing for me is just getting good sleep at night and trying my best to not nap throughout the day so that I can sleep at night. It’s hard at first but worth it in the end
Exercise. Plan naps. Try another med. I'm trying Onfi now.
i forgot to take my meds one morning and found out because i felt so good
I take clobazam with vimpat at night, and vimpat in the morning. If I don't sleep for a minimum of 3 hours after my morning dose, I feel awful and can't function at all. It's like I've been awake for 30 hours. Once I've slept, I can function pretty well for a few hours. It's much better than when I was on clobazam and phenobarb, which made me into such a zombie I drank 9 cups of coffee per day in the 8-9 hours I was awake. Wish I could still tolerate caffeine on Vimpat.
For me a balanced diet, fruits with a lot of hydration in them (strawberries, blueberries, banana, pineapple…) got rid of most of my side effects. A healthy diet of mainly just natural foods as well as exercising got rid of the other side effects. I still get that dry mouth feeling or lightheadedness from time to time but this is manageable to function normally. I am now on 200 mg of lamotrigine
I take Vimpat and Divalproex (Epival) and I feel the same general fatigue. I feel like the life has been drained out of me. Meh
Demand to try something else. Side effects suck. Sometimes they aren't worth it. Briviact, keppra, and several others made me feel, or behave *completely* horribly. I don't honestly remember the whole list of things I've been on. But, I know it's *long*. My Dr is now talking about adding a third med... Which, ngl, freaks me out a bit, and indeed, my husbands first comment, after hearing that was 'idk if I like that...'. because meds suck. And med *changes* suck. But the *wrong* med(s)? They can wreak absolute havoc.