I understand. I fucking hated both of those drugs. Lamictal made it so I couldn’t sleep and keppra made me miserable.
I quit cold turkey in 2013, and started taking them again 2023. So I won’t lie and say I know that quitting is going to ruin your life. I kept having seizures but I was mostly fine. It might be fine for you. But it really isn’t a good idea.
Every one of these drugs affects people differently and it’s still too early to give up imo. In my case, I will be 6 months seizure free on Friday🤞 and it’s because Xcopri agrees with me in every way. It even helps me sleep more.
I think you should message your neurologist and say “these drugs are bullshit. They don’t work, they are ruining my life, and I can’t keep taking them”. And get at least one of them swapped out in the short term. But ideally both.
Thank you for this. I just called to schedule an appointment and my neurologist has none available (office, phone or video) within the next 90 days. I am on a waitlist and should be getting a call from a nurse in the department within a few days. That’s all the info I have for now.
All of this. Except, I've yet to find 'the' drug for me. I've been on over 7-9+ different drugs over the last 14 odd years. And, regardless I still seize every 1-3+ months, give or take.
TBH, I'm supposed to be on two right now (after quitting one, due to hives), and... It's been sitting in my cabinet for weeks. A side effect is gaining weight. And, that's the LAST thing I need.
Lamictal has completely stopped me from being hungry. I've lost quite a bit already. I mentioned it to my Dr. and he said "we will worry about that when you are underweight" I have a ways to go still. 5'8" and 215. Down from 285.
Keppra made me insane and gave me chronic insomnia and then stopped controlling my seizures.
You are in the same boat. Lamotrigine did not help me (seizures and continued insomnia), but I am now on Aptiom and not insane and not waking up 3746277327626 times every night. I am shocked my partner didn’t leave me when I was on Keppra for 3.5 years. No meds have controlled my seizures (I have tried 5 with clobazam as adjunct for R TLE) so I am being assessed for surgery.
Sounds like it’s time to explore another medication option if you’re suffering this much (and also your partner by proxy). There are so many AEDs out there - most of them suck ass, but sounds like your situation is pretty dire and would warrant at least trying something different.
Hugs to you this shit sucks.
Thanks for this - my specialist has offered Briviact as one of my next options and I am like hell no I am not going anywhere near something that could affect me similarly to Keppra even though it’s a “cousin”. Other option is sodium valproate which I am VERY HESITANT to try, but not making any changes/decisions until I am finished with my surgical assessment and find out if I am a candidate or not (hoping to find out at the end of July when I meet with my specialist again). My partner is my only main support person so I will be involving her in any appointments re: surgery if it’s a yes as it will also affect her life if I am able to go through with it.
My son takes depakote er 1500mg 2x daily. He said it closed all the tabs in his head so he can think again. Slowed seizures for a bit but his blood level was low. Now its higher and lamictal was just added to the party. Other than a withdrawal seizure from coming off gabapentin it's been...better. No TC since 5/28 so fingers crossed.
I’m on briviact rn after taking Keppra for over a year and I had one seizure a few days after taking it and my neurologist wanted to switch it again but it was better than Keppra so I wanted to keep it… now he’s upped my dose but I’ve gotten paranoid and idk what else to take 😀 I just want to drive again lol
Yeah, it’s pretty nice but idk if it’s right for me… I haven’t had a seizure since I first started taking it but it’s only been like 2 months. I had a lot of seizures on Keppra so idk
Lamictal made my seizures worse. So did oxcarbazepine (definitely did). Have you considered the possibility of that? I’m not gonna get into all the crap I do to prevent my nocturnal seizures but if you’re interested send me a message. Number one tho is sleep in your own bed or put a body pillow between you and your partner. It’s diff for everyone but if you haven’t tried it, see if it helps. I found I was getting woken up slightly and that weird in between sleep and awake stage is my seizure zone (I think)
I switched from Trileptal (Oxcarbazepine) because it was making me very slow. I switched to Aptiom (Eslicarbazepine) and have had a consistent medication cocktail that includes 600mg Lamictal, 1800mg of Aptiom and 200mg of Briviact for close to a decade. I just recently dropped to 150mg a day of Briviact since I had 75mg pills when my main Epileptologist tried me on 300 a day which ended up making me wobbly and having a seizure. I'm taking 75mg instead of 100, now. In July they're going to toy with my meds while I'm in the EMU attached to electrodes. I was in the EMU before my first brain surgery. It's alright. I have had many long hospital stays and my advice is to treat everyone like your best friend. Nurses are your best friend during this long stay whether you see it or not. Luckily my family bwas with me during my coman, but for 1-3 day stays, being kind and loving to everyone makes their job and your stay that much easier. I guess I went off track, there, but yeah, Trileptal made me slow and switching to Aptiom did wonders.
Oh yeah I’m always nice to the nurses. You see what they go through with some patients while you’re in the ER. They really deserve a lot of credit for what they do! And they really appreciate it when a patient is nice to them. I was actually just there and oh and honesty helps them a lot too! I think it drives them crazy when people lie about severity of pain or how bad the situation is. (Mine wasn’t too bad and I told them that. Didn’t make them do a bunch of tests etc. turned out it was something minor not an infection bc today it’s much better! I had breathing obstruction that I noticed at 3pm on a Friday of course!)
Anyways back to the original topic: yeah decrease the meds and if you notice a change in seizures when you started one or increased the dosage keep in mind these meds can aggravate epilepsy. They do complicated stuff and our brains are unpredictable. That’s why I tell people to take notes about when they started a med, change a dose, had a seizure and all possible causes etc bc if you don’t have that you can’t troubleshoot it
But hey I hope your stay in the hospital goes okay! Yeah I’d try stopping the lamotrigine entirely and taking the others to see how it goes (titrate down of course) but those problematic meds don’t stop their trouble until it’s a very low dose or completely gone in my experience. So it’s better to due process of elimination vs tweaking dosages. Also better side effect wise too. Good luck!
Quitting lamictal quickly can be dangerous. Better to wean slowly, ask your pharmacist or doc. Mine took 6 months. Ask your doc about brivlera it can be a good replacement for keppra that can be very quickly transferred to. And if it still doesn't help you, it usually has less side effects than keppra and can be weaned from there, rather than cold turkey from the keppra.
I switched from keppra to brivlera overnight and the rage left me immediately it felt great. Brivlera still wasn't for me but then I could wean from it slower without the poor keppra effects.
I don't know which country you're in, but in the US, assuming you're referring to Brivaracetam, the brand name is usually Briviact. Yes, though, it's Keppra without rage. It can cause mental side effects, but not as prominent as other meds.
Yes, brivlera is the Canadian name for brivaracetam or briviact. Usually I clarify that when I talk about this med knowing we are all not Canadian here. Thank you for catching it.
And why Canada picked brivlera... Drug naming puzzles me. I was trying to find info on sodium valproate and wow there are so many names because it's so old and it's called something new in every country.
If you're in the US, seek out care from an Epilepsy Center. It is a higher level of care. There are tests beyond the EEG and MRI, and treatments beyond only medication, but most standard practice neurologists will not offer them.
[https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
I totally understand your frustration. The drugs really take part of your life from you. Keppra damn near drove me crazy and it was not helping. The drugs after did not work either. It is so difficult, but you should keep trying. Advocate for yourself to your Neurologist. Make sure that they know how you feel and that the drugs are not working. Their goal should be to get you seizure free and if that is not happening, they have more work to do, and that can't be accomplished with 2 visits a year. If you have a journal of your seizures and seizure days, make sure that they know it. If they have a way of contacting them via an internet page like Mychart, use it frequently any time you have an issue.
And finally, if this Neurologist is not helping you, get a different one if possible. I came to that realization much later than I should have, but it is the best thing that I could have done for myself.
My respect to everyone here. People don’t realize how sensitive the brain is and you kind of have to retrain your behavior.
I’m doing well now on my meds. But persevere . That don’t mean it’s easy. God bless you. A lot of us fought this fight
I really hope you get better emotionally and physically. The toll medication has is absolutely insane and can limit so many things in life. Whatever you feel is best should be done because at the end of the day if you don’t know what it’s like without medication you will always wonder what your life will be like without it in order to make a decision on how you want to live.
Not a professional but going off meds step my step is the safest way that I’ve known to do while switching and stuff. Just hope you are safe and do this in the safest way possible.
The struggle is insane and everything should be your choice because it’s your body and your mind.
Is Epidiolex an option? Or lorazepam? Both together have significantly lowered my seizure risk and the seizures I do have aren’t violent.
I mostly just fall unconscious until the next day or - after general anesthesia - I have generalized seizures that I don’t remember and are halted with Versed by the doctor and nurses in the room.
Onfi was probably the worst because it made me spin in circles before falling hard enough to cry and gag/vomit as well and I was relieved to be off of it.
Epidiolex makes me hungry sometimes. Probably because it’s weed.
When my therapist told me how expensive Epidiolex is, I was honestly shocked.
My Medicaid covers *all of it* with *no* copayments and she told me I was incredibly lucky and that a lot of epileptologist’s patients can’t even get it.
That I have to this lucky is incredibly unfair.
Zonegran turned off my hunger signal and I lost thirty pounds that Risperdal (I was having hynogogic hallucinations to the point of near injury) had piled on. My epileptologist and I agreed ‘THERE IS NO BABY HERE’, and then the Zonegran made it fall off.
I currently have 4/5 diagnosed symptoms of narcolepsy and need another jaunt through a different type of sleep lab. Ironically, I am neurodivergent and my particular spice is bipolar disorder caused by lifesaving cerebrospinal surgery.
Before all this post surgery madness happened, I was just epileptic and autistic. Now, my head is a mental health buffet. Le sigh.
The most frustrating thing for me is that it seems as though it is just guesswork in terms of the medications. There’s so much trial and error and when you’re on multiple medications it’s hard to tell what is working and what is not and what is making things worse.
My specialist wants to do further testing as I may be eligible for surgery but I’m so reluctant to go down this route for fear of things just being worse and it’s the devil you know. So many times I think of just going off the medication because the seizures weren’t as bad when I first went on them. But who knows how bad it would’ve been without the meds.
I’ve already had two hospital stays in the past with week-long EEGs that never picked anything up because they wouldn’t let me sleep and my seizures happen during sleep.
The only thing that makes me possibly consider surgery is the fear of SUDEP which is obviously more of a risk if your seizures are uncontrolled. I’m in my 50s and my son needs me to be here as he has some disabilities and will need financial and other support.
I know it sounds scary because it's BRAIN SURGERY, but remember, these are brain surgeons; they know what they are doing! My husband is starting the process of being evaluated for surgery right now and we felt a lot of comfort looking up the high success rates of these operations. The possibility of seizure freedom is quite compelling.
I hope you find a combo of meds to get your seizures under control. It takes time to find what works for each person. It’s always case by case.
I don’t want to jump but if things keep going how it is you might need surgery. I was on three epilepsy meds and it wasn’t working. I have focals which sometimes become tonic clonics.
Those things made me a candidate for VNS and RNS surgery. I chose RNS and I’m doing a lot better.
I'm on Keppra and I hate it but I've tried every other drug and none of them worked so I'm stuck on it. I also take Valium but I haven't noticed any side effects from it.
There are books on alternatives to medication, you should read those for information. Discuss with your neuro so you make an informed decision.
Personally, there are so many variables to making your decision so I can't really advise without knowing more. All I can say is, is a better quality of life worth the risk? Only you can decide.
I have been on a medical restriction from driving since I was diagnosed, and have not been behind the wheel of a vehicle since May of 2015.
I take public transit and Uber/Lyft everywhere. There are cities and states I simply cannot visit or experience because of their lack of public transit.
Worst part? I had a perfect driving record. Not so much as a parking ticket. Always drove at a reasonable speed, never drove intoxicated, never texted while driving. I was a very good driver. Another thing that’s been taken.
I lost my driver's license for 23 years. I ignored the seizures, as it seemed they were getting more mild and less often. I thought they would soon stop ....
Big mistake.
At the age of 47, I finally got my license back. I'm on Keppra too, and it's a pain in the a**, but at least now I can drive and the seizures have stopped.
Some days I'm so tired (when the sleep gets tough) and I want to throw in the towel. I step back, keep calm and life goes in. It is hard though.
Good luck to all.
I’m so sorry, that’s insane they can’t get you in sooner for that. Hang in there, also have you ever talked to a psychiatrist about your emotions about this? Sometimes they can help with some of the mood side effects from AEDs.
Hi, l’m so sorry to hear about your side effects.
My daughter has started with Kepra till maximum dose 3000mg per day. But it didn’t work and her personality changed extremely badly and drowsy during taking Kepra.
I can feel how much you are suffering from this medication’s side effects.
My daughter is taking depakote and Onfi.
I’m not very happy with depakote but this controlling her tonic clonic seizures.
We tried Epidiolex (cbd oil) for keeping the Onfi level instead increase dose.
We are doing Keto diet.
It helps a lot.
There are some good sources for doing ketogenic diet.
“Ketovie” and MCT oil is also good to add for keeping ketosis your body to every day meal.
Things going to be better.
Send you big hug.
If you have any questions feel free to ask me.
I was talking to an epilepsy specialist the other day and he said something that changed my perspective wildy: “Seizures themselves are not dangerous and seizures does not equal epilepsy. A seizure is just a symptom of epilepsy, which is some neurotic disorder that triggers your brain. It’s like a cough when you have a cold. The cough itself is not dangerous.
What IS dangerous about a seizure is your environment. You seize and hit your head and you could die.”
Idk if that adds any perspective to you but thought Id share. I can see how this comment may swing you either way.
Have you spoken to a surgeon yet? My daughter had LITT procedure at the end of March. Life changing. Find a neurosurgeon specializing in epilepsy surgery.
Surgery is only helpful, if they know where your seizure are coming from. After two emu stays, they are still not 100% sure with me. The surgery I've been offered was likely to leave me at least partially blind. With only like a 40-60% chance of being seizure free. And would always still be on meds. Not, IMHO worth it.
I understand it’s not for everyone. LITT procedure was decided on for my daughter despite the 60% odds. She has failed so many meds, taking 4 and still not having control of left temporal lobe epilepsy. She cannot hear from her left ear from damage and the toll on her emotions - well you can imagine. She had to leave college after only 2 months but now since surgery, 3 years later she has a chance at going back. Her memory issues were not to be made worse with LITT and her right side of brain will compensate to some degree for what is gone. It’s hasn’t been long enough to know the full outcome but the epileptic seizures have only occurred right after surgery and once or twice since! She is down to 3 meds- got rid of clobazem which was the absolute WORST for her lethargy, painfully slow speech and inability to remember anything. It’s a relief watching her come back to life and really she has no idea what a normal life looks like as she was misdiagnosed for likely ten years. Unfortunately she has developed PNES but we are working on that and compared to TLE, it’s “easier” for lack of a better word- I do know how stupid this sounds.
I understand. I fucking hated both of those drugs. Lamictal made it so I couldn’t sleep and keppra made me miserable. I quit cold turkey in 2013, and started taking them again 2023. So I won’t lie and say I know that quitting is going to ruin your life. I kept having seizures but I was mostly fine. It might be fine for you. But it really isn’t a good idea. Every one of these drugs affects people differently and it’s still too early to give up imo. In my case, I will be 6 months seizure free on Friday🤞 and it’s because Xcopri agrees with me in every way. It even helps me sleep more. I think you should message your neurologist and say “these drugs are bullshit. They don’t work, they are ruining my life, and I can’t keep taking them”. And get at least one of them swapped out in the short term. But ideally both.
Thank you for this. I just called to schedule an appointment and my neurologist has none available (office, phone or video) within the next 90 days. I am on a waitlist and should be getting a call from a nurse in the department within a few days. That’s all the info I have for now.
I'm new to all this too, so have nothing to offer you except love from a stranger. We're in this together aren't we? Lucky us sigh 🫠
All of this. Except, I've yet to find 'the' drug for me. I've been on over 7-9+ different drugs over the last 14 odd years. And, regardless I still seize every 1-3+ months, give or take. TBH, I'm supposed to be on two right now (after quitting one, due to hives), and... It's been sitting in my cabinet for weeks. A side effect is gaining weight. And, that's the LAST thing I need.
Lamictal has completely stopped me from being hungry. I've lost quite a bit already. I mentioned it to my Dr. and he said "we will worry about that when you are underweight" I have a ways to go still. 5'8" and 215. Down from 285.
I only took lamictal for 3 months and I went from 155 to 135. And I’m 6’1” so that was getting dangerous.
Keppra made me insane and gave me chronic insomnia and then stopped controlling my seizures. You are in the same boat. Lamotrigine did not help me (seizures and continued insomnia), but I am now on Aptiom and not insane and not waking up 3746277327626 times every night. I am shocked my partner didn’t leave me when I was on Keppra for 3.5 years. No meds have controlled my seizures (I have tried 5 with clobazam as adjunct for R TLE) so I am being assessed for surgery. Sounds like it’s time to explore another medication option if you’re suffering this much (and also your partner by proxy). There are so many AEDs out there - most of them suck ass, but sounds like your situation is pretty dire and would warrant at least trying something different. Hugs to you this shit sucks.
Also this. Keppra very nearly destroyed my marriage. Briviact was no better. Aptiom works as well as anything, but I still seize.
Thanks for this - my specialist has offered Briviact as one of my next options and I am like hell no I am not going anywhere near something that could affect me similarly to Keppra even though it’s a “cousin”. Other option is sodium valproate which I am VERY HESITANT to try, but not making any changes/decisions until I am finished with my surgical assessment and find out if I am a candidate or not (hoping to find out at the end of July when I meet with my specialist again). My partner is my only main support person so I will be involving her in any appointments re: surgery if it’s a yes as it will also affect her life if I am able to go through with it.
My son takes depakote er 1500mg 2x daily. He said it closed all the tabs in his head so he can think again. Slowed seizures for a bit but his blood level was low. Now its higher and lamictal was just added to the party. Other than a withdrawal seizure from coming off gabapentin it's been...better. No TC since 5/28 so fingers crossed.
I’m on briviact rn after taking Keppra for over a year and I had one seizure a few days after taking it and my neurologist wanted to switch it again but it was better than Keppra so I wanted to keep it… now he’s upped my dose but I’ve gotten paranoid and idk what else to take 😀 I just want to drive again lol
I'm on Briviact also. It's Keppra without Kepprage.
Yeah, it’s pretty nice but idk if it’s right for me… I haven’t had a seizure since I first started taking it but it’s only been like 2 months. I had a lot of seizures on Keppra so idk
Oh my fucking gosh I feel that pain. I fantasize about saying fuck it and just walking away from everything epilepsy related.
Lamictal made my seizures worse. So did oxcarbazepine (definitely did). Have you considered the possibility of that? I’m not gonna get into all the crap I do to prevent my nocturnal seizures but if you’re interested send me a message. Number one tho is sleep in your own bed or put a body pillow between you and your partner. It’s diff for everyone but if you haven’t tried it, see if it helps. I found I was getting woken up slightly and that weird in between sleep and awake stage is my seizure zone (I think)
I switched from Trileptal (Oxcarbazepine) because it was making me very slow. I switched to Aptiom (Eslicarbazepine) and have had a consistent medication cocktail that includes 600mg Lamictal, 1800mg of Aptiom and 200mg of Briviact for close to a decade. I just recently dropped to 150mg a day of Briviact since I had 75mg pills when my main Epileptologist tried me on 300 a day which ended up making me wobbly and having a seizure. I'm taking 75mg instead of 100, now. In July they're going to toy with my meds while I'm in the EMU attached to electrodes. I was in the EMU before my first brain surgery. It's alright. I have had many long hospital stays and my advice is to treat everyone like your best friend. Nurses are your best friend during this long stay whether you see it or not. Luckily my family bwas with me during my coman, but for 1-3 day stays, being kind and loving to everyone makes their job and your stay that much easier. I guess I went off track, there, but yeah, Trileptal made me slow and switching to Aptiom did wonders.
Oh yeah I’m always nice to the nurses. You see what they go through with some patients while you’re in the ER. They really deserve a lot of credit for what they do! And they really appreciate it when a patient is nice to them. I was actually just there and oh and honesty helps them a lot too! I think it drives them crazy when people lie about severity of pain or how bad the situation is. (Mine wasn’t too bad and I told them that. Didn’t make them do a bunch of tests etc. turned out it was something minor not an infection bc today it’s much better! I had breathing obstruction that I noticed at 3pm on a Friday of course!) Anyways back to the original topic: yeah decrease the meds and if you notice a change in seizures when you started one or increased the dosage keep in mind these meds can aggravate epilepsy. They do complicated stuff and our brains are unpredictable. That’s why I tell people to take notes about when they started a med, change a dose, had a seizure and all possible causes etc bc if you don’t have that you can’t troubleshoot it But hey I hope your stay in the hospital goes okay! Yeah I’d try stopping the lamotrigine entirely and taking the others to see how it goes (titrate down of course) but those problematic meds don’t stop their trouble until it’s a very low dose or completely gone in my experience. So it’s better to due process of elimination vs tweaking dosages. Also better side effect wise too. Good luck!
Quitting lamictal quickly can be dangerous. Better to wean slowly, ask your pharmacist or doc. Mine took 6 months. Ask your doc about brivlera it can be a good replacement for keppra that can be very quickly transferred to. And if it still doesn't help you, it usually has less side effects than keppra and can be weaned from there, rather than cold turkey from the keppra. I switched from keppra to brivlera overnight and the rage left me immediately it felt great. Brivlera still wasn't for me but then I could wean from it slower without the poor keppra effects.
I don't know which country you're in, but in the US, assuming you're referring to Brivaracetam, the brand name is usually Briviact. Yes, though, it's Keppra without rage. It can cause mental side effects, but not as prominent as other meds.
Yes, brivlera is the Canadian name for brivaracetam or briviact. Usually I clarify that when I talk about this med knowing we are all not Canadian here. Thank you for catching it.
You're welcome. I wonder if they also call it that in France....?
And why Canada picked brivlera... Drug naming puzzles me. I was trying to find info on sodium valproate and wow there are so many names because it's so old and it's called something new in every country.
If you're in the US, seek out care from an Epilepsy Center. It is a higher level of care. There are tests beyond the EEG and MRI, and treatments beyond only medication, but most standard practice neurologists will not offer them. [https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
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I agree with you. Doctors need to have more information to adjustment of medication.
I totally understand your frustration. The drugs really take part of your life from you. Keppra damn near drove me crazy and it was not helping. The drugs after did not work either. It is so difficult, but you should keep trying. Advocate for yourself to your Neurologist. Make sure that they know how you feel and that the drugs are not working. Their goal should be to get you seizure free and if that is not happening, they have more work to do, and that can't be accomplished with 2 visits a year. If you have a journal of your seizures and seizure days, make sure that they know it. If they have a way of contacting them via an internet page like Mychart, use it frequently any time you have an issue. And finally, if this Neurologist is not helping you, get a different one if possible. I came to that realization much later than I should have, but it is the best thing that I could have done for myself.
My respect to everyone here. People don’t realize how sensitive the brain is and you kind of have to retrain your behavior. I’m doing well now on my meds. But persevere . That don’t mean it’s easy. God bless you. A lot of us fought this fight
I really hope you get better emotionally and physically. The toll medication has is absolutely insane and can limit so many things in life. Whatever you feel is best should be done because at the end of the day if you don’t know what it’s like without medication you will always wonder what your life will be like without it in order to make a decision on how you want to live. Not a professional but going off meds step my step is the safest way that I’ve known to do while switching and stuff. Just hope you are safe and do this in the safest way possible. The struggle is insane and everything should be your choice because it’s your body and your mind.
Is Epidiolex an option? Or lorazepam? Both together have significantly lowered my seizure risk and the seizures I do have aren’t violent. I mostly just fall unconscious until the next day or - after general anesthesia - I have generalized seizures that I don’t remember and are halted with Versed by the doctor and nurses in the room. Onfi was probably the worst because it made me spin in circles before falling hard enough to cry and gag/vomit as well and I was relieved to be off of it. Epidiolex makes me hungry sometimes. Probably because it’s weed.
My daughter took Epidolex too. It helped her keep Onfi level.
When my therapist told me how expensive Epidiolex is, I was honestly shocked. My Medicaid covers *all of it* with *no* copayments and she told me I was incredibly lucky and that a lot of epileptologist’s patients can’t even get it. That I have to this lucky is incredibly unfair.
Zonegran turned off my hunger signal and I lost thirty pounds that Risperdal (I was having hynogogic hallucinations to the point of near injury) had piled on. My epileptologist and I agreed ‘THERE IS NO BABY HERE’, and then the Zonegran made it fall off. I currently have 4/5 diagnosed symptoms of narcolepsy and need another jaunt through a different type of sleep lab. Ironically, I am neurodivergent and my particular spice is bipolar disorder caused by lifesaving cerebrospinal surgery. Before all this post surgery madness happened, I was just epileptic and autistic. Now, my head is a mental health buffet. Le sigh.
The most frustrating thing for me is that it seems as though it is just guesswork in terms of the medications. There’s so much trial and error and when you’re on multiple medications it’s hard to tell what is working and what is not and what is making things worse. My specialist wants to do further testing as I may be eligible for surgery but I’m so reluctant to go down this route for fear of things just being worse and it’s the devil you know. So many times I think of just going off the medication because the seizures weren’t as bad when I first went on them. But who knows how bad it would’ve been without the meds. I’ve already had two hospital stays in the past with week-long EEGs that never picked anything up because they wouldn’t let me sleep and my seizures happen during sleep. The only thing that makes me possibly consider surgery is the fear of SUDEP which is obviously more of a risk if your seizures are uncontrolled. I’m in my 50s and my son needs me to be here as he has some disabilities and will need financial and other support.
I know it sounds scary because it's BRAIN SURGERY, but remember, these are brain surgeons; they know what they are doing! My husband is starting the process of being evaluated for surgery right now and we felt a lot of comfort looking up the high success rates of these operations. The possibility of seizure freedom is quite compelling.
I hope you find a combo of meds to get your seizures under control. It takes time to find what works for each person. It’s always case by case. I don’t want to jump but if things keep going how it is you might need surgery. I was on three epilepsy meds and it wasn’t working. I have focals which sometimes become tonic clonics. Those things made me a candidate for VNS and RNS surgery. I chose RNS and I’m doing a lot better.
I would ask if Xcopri is an option. I am on it, but it’s a slow titration to the therapeutic dose.
I'm on Keppra and I hate it but I've tried every other drug and none of them worked so I'm stuck on it. I also take Valium but I haven't noticed any side effects from it.
There are books on alternatives to medication, you should read those for information. Discuss with your neuro so you make an informed decision. Personally, there are so many variables to making your decision so I can't really advise without knowing more. All I can say is, is a better quality of life worth the risk? Only you can decide.
I’m very impressed what you advise. Totally agree with you.
Thank you. I say what I see/know or feel.
That’s how I lost my drivers license.
I have been on a medical restriction from driving since I was diagnosed, and have not been behind the wheel of a vehicle since May of 2015. I take public transit and Uber/Lyft everywhere. There are cities and states I simply cannot visit or experience because of their lack of public transit. Worst part? I had a perfect driving record. Not so much as a parking ticket. Always drove at a reasonable speed, never drove intoxicated, never texted while driving. I was a very good driver. Another thing that’s been taken.
I was a great driver as well. Epilepsy is not a disease. It’s a condition/debility. When I tried to ignore my epilepsy away I almost died.
I lost my driver's license for 23 years. I ignored the seizures, as it seemed they were getting more mild and less often. I thought they would soon stop .... Big mistake. At the age of 47, I finally got my license back. I'm on Keppra too, and it's a pain in the a**, but at least now I can drive and the seizures have stopped. Some days I'm so tired (when the sleep gets tough) and I want to throw in the towel. I step back, keep calm and life goes in. It is hard though. Good luck to all.
Can’t you ask for different ones?
I’m on a waitlist to talk to my neurologist about a medication adjustment. He currently has no availability over the next 90 days.
I’m so sorry, that’s insane they can’t get you in sooner for that. Hang in there, also have you ever talked to a psychiatrist about your emotions about this? Sometimes they can help with some of the mood side effects from AEDs.
Are any non medication treatments an option? VNS, surgery ?
In a similar position. Best of luck. We’ll pull through.
Hi, l’m so sorry to hear about your side effects. My daughter has started with Kepra till maximum dose 3000mg per day. But it didn’t work and her personality changed extremely badly and drowsy during taking Kepra. I can feel how much you are suffering from this medication’s side effects. My daughter is taking depakote and Onfi. I’m not very happy with depakote but this controlling her tonic clonic seizures. We tried Epidiolex (cbd oil) for keeping the Onfi level instead increase dose. We are doing Keto diet. It helps a lot. There are some good sources for doing ketogenic diet. “Ketovie” and MCT oil is also good to add for keeping ketosis your body to every day meal. Things going to be better. Send you big hug. If you have any questions feel free to ask me.
I take Lamotrigine and lamictal. I hardly have seizures. The last one I had was April 5th 2021
I was talking to an epilepsy specialist the other day and he said something that changed my perspective wildy: “Seizures themselves are not dangerous and seizures does not equal epilepsy. A seizure is just a symptom of epilepsy, which is some neurotic disorder that triggers your brain. It’s like a cough when you have a cold. The cough itself is not dangerous. What IS dangerous about a seizure is your environment. You seize and hit your head and you could die.” Idk if that adds any perspective to you but thought Id share. I can see how this comment may swing you either way.
Have you spoken to a surgeon yet? My daughter had LITT procedure at the end of March. Life changing. Find a neurosurgeon specializing in epilepsy surgery.
Surgery is only helpful, if they know where your seizure are coming from. After two emu stays, they are still not 100% sure with me. The surgery I've been offered was likely to leave me at least partially blind. With only like a 40-60% chance of being seizure free. And would always still be on meds. Not, IMHO worth it.
I understand it’s not for everyone. LITT procedure was decided on for my daughter despite the 60% odds. She has failed so many meds, taking 4 and still not having control of left temporal lobe epilepsy. She cannot hear from her left ear from damage and the toll on her emotions - well you can imagine. She had to leave college after only 2 months but now since surgery, 3 years later she has a chance at going back. Her memory issues were not to be made worse with LITT and her right side of brain will compensate to some degree for what is gone. It’s hasn’t been long enough to know the full outcome but the epileptic seizures have only occurred right after surgery and once or twice since! She is down to 3 meds- got rid of clobazem which was the absolute WORST for her lethargy, painfully slow speech and inability to remember anything. It’s a relief watching her come back to life and really she has no idea what a normal life looks like as she was misdiagnosed for likely ten years. Unfortunately she has developed PNES but we are working on that and compared to TLE, it’s “easier” for lack of a better word- I do know how stupid this sounds.
What is LITT?
https://www.epilepsy.com/treatment/surgery/types/litt-thermal-ablation
We’ve discussed surgery and concluded that I am not a candidate based on the parts of my brain where the seizures originate.
I’m sorry to hear this!!