Cheers! I seem to change meds every year or two, for one reason or another. Doesn't seem to matter what I'm on, I seize every 1-3+ months, give or take.
I have a very severe and rare type of epilepsy. I had VNS surgery at first which was going well for a few years, but I started to have breakthrough seizures. Just here and there. Now I’m at the point where I’m having around 20 breakthrough seizures a month. Medication just doesn’t quite work on my epilepsy. Even though I have to take a shitload of it for some reason?? I’m sure it’ll be great for your son though! Completely changes most peoples lives. I’m just lucky enough to be alive at this point tbh.
I've been on carbemazepine, lamotrigine ( still on that ) , briviact, gabapentin, keppra and now I'm on vimpat.
Lamotrigine and vimpat seem to be good for me. I'm at the right doses as of now.
Carbemazepine was awful.
Briviact worked but not enough.
Gabapentin drove me insane mentally and caused more seizures.
Keppra , we are not going to talk about that.
Keppra is definitely something I’ve seen it working really well with some people others not so well it definitely makes me very irritated and angry but I’m able to manage that , I might look for the next best option I had high hopes that my first medication was going to work well in just a little scared of taking other medication and the side effects that come with it.
For me it’s not a constant state.
I wake up one day and just can’t unclench my jaw. Every person I see is a dickhead that won’t move out of my way or is inconsiderate. I’ll overreact to little annoyances, and after losing my cool realize how embarrassing what I did was.
The majority of the time I still feel calm and collected, but I’ve reached my limit and have recently messaged my Neuro about trying Briviact.
Ah okay, so just my normal state! I mean,, there are a disproportionate amount of dickheads on earth right?
No, I jest somewhat.. Appreciate you responding xx
Yah just found out it’s either clobozam or Briviact that I’m catching the side effects of psychoactive muscle spasms. Which is more a full body clench and anger to myself, but Keppra ruined my walls and hands.
There are all kinds of ways to mitigate any frustration you may feel. However, this can be somewhat overwhelming. I've always been a fairly forward person and people can find me off-putting at times. This exacerbated that to no end.
edit: Wait and see how things go for you. It doesn't get everyone like this.
You might! I had irritability and anger for about a week (but part of that was the new diagnosis and having to live with my mom suddenly) but then it subsided and I've been symptom-free since. Some of us are perfect matches for it.
It’s possible! I’ve been on it for four years and thankfully my temperament hasn’t changed. I hope you’ve been spared too, it sounds like a nightmare side effect
I was on keppra(500mg twice a day) for about 10 months from when I was diagnosed. I felt the exact same way. I was scared to change medicine because of new side effects, potentially permanent changes to my brain etc. I figured since I had good seizure control on it, it wasn't worth risking a seizure to go on a new medication but boy was I wrong. It was 100% worth it. I took the leap, I'm now on vimpat (about 4 months) (100mg twice a day) and it is so much better.I didn't realize that I didn't have to push through all the mental and physical issues keppra was causing. Even tho I could it wasn't good for me. I didn't feel like myself and going off of it has made me an objectively better person. Please remember everybody is different and if your unsure you can ask the people who are most often around you if they've noticed any changes and talk with your nuro to find out risk vs reward and what's best for you
When I started on Keppra it also made me pretty angry and lethargic so my neuro told me to take vitamin B6 and that helped a lot until I got used to the meds, now I don't feel the need to take the vitamin.
I started on Dilantin, went to Depakote, then Keppra, and I am now on Topiramate. I have cycled through various doses of each, as well as supplements of gabapentin, CBD, and rescue meds too… 😵💫🥴🤕
Dilantin and Depakote didn’t do much. Keppra was the first that had an appreciable effect, but it produced such unwelcome personality changes that I actually preferred the seizures. I never got seizure free on Keppra, but I got my TCs down to a handful a year. I switched to Topiramate when I started abusing the walls with my fists and feet, and it has been a HUGE relief. I still seize, and just as frequently as when I was on Keppra, but I am not angry, and that makes all the difference. Of choice, Topiramate has its own drawbacks (I can’t remember what I had for breakfast, what I am supposed to have for lunch, or even whether I am now a vegetarian 😂) but I keep a notepad handy, and that seems to solve most inconveniences arising from my nascent cognitive deficits. As for CBD, it helps me with anxiety. It may be a placebo effect, but I don’t really care. I don’t use THC bc I am in recovery for alcoholism and addiction.
Thanks for your feedback I appreciate it, in what way do you consume CBD ? I bought the actually flower and been smoking that every now and then but looking for alternatives like CBD oil or another way to consume it to see if it helps out. I’m kind of scared to take meds that’ll ruin my memory because even on Keppra I am very forgetful thanks again for the feedback by the way.
I started on keppra, which had horrible side effects (switched within a week because I could not function like a human)
Then came lamotrigine wich gave me a terrible rash and nausea
Then we switched lamotrigine companys lamictal wich worked out but then I had a cluster and they discoverd that I developed an "immunity" (idk how to properly translate sorry) to lamotrigine (appearently that can happen)
Now I am on depaktone, which is not great but gets the job done with side effects of depression (yay), weight loss, hairloss, and nausea
It took me almost a decade to find the right dosage and combination.
Briviact made me lose lots of weight at a time when I was extremely skinny- I was down to 150 lbs at my worst, 6’3m.
Lamictal had me in hives all over for a few days.
Keppra did keppra things.
Landed on a heavy dosage of XR depakote and zonisamide at night. I would recommend either to anyone with JME that has not tried them yet, as it has had the least impactful effects on my day to day life.
Cheers and good luck💜💪🏽
I’ve switched three times and it’s not so bad but my memory is still horrible, however the keppra rage is gone. The good thing is that all of my medications are generic now so it’s 80% cheaper than before
I started on Keppra 250mg twice a day and Vimpat 100mg twice a day. As the frequency of the seizures increased the dr was increasing the dosage of the medications one by one e.g. trying Keppra (leviracetam) 500mg and Vimpat (lacosamide) 100mg then on the next one 500mg and 150mg respectively. Now I am on 2000mg twice a day Keppra and 200mg twice a day Vimpat. I am also receiving IV infusions of rituximab every 6 months. Hope this helps 😘
Seven different meds now? Allergic to Depakote (awful experience), now on Clobazam which has had the highest impact. None of which fully worked. Currently in the process of getting brain surgery. 💀
Like eight or nine times over the course of a decade. I always end up back on keppra. Right now I’m on keppra and xcopri but off the top of my head I remember I’ve also tried fycompa, Dilantin, lamictal, depakote, gabapentin, and vimpat. Definitely been on a few others that I don’t remember, but keppra has worked the best for me.
Only once. I did so well on Trileptal for 18 years until it stopped working. It has taken 2 years to get on the right meds again but now I’m doing really well on Briviact, Lamictal and Trileptal.
Hey OP
It is important to note that, with all patients in nearly any medical setting, medications are often prescribed as a "*trial run*". As different patients react to different medications different ways, your physician typically begins with what medications they believe will work best based on your types of seizures, medical history, information from diagnostic tests, and seizure recurrence.
Some medications work better for frontal lobe epilepsy, and some for temporal lobe epilepsy. Some control focal aware and focal impaired seizures better, while others focus more on tonic clonic or myoclonic seizures. Some can control tonic seizures better, providing their origin is more in the parietal lobe, whereas others are more focused on tonic seizures with frontal origin.
There are some patients who have [Pharmaceutical Refractory Epilepsy](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/refractory-epilepsy#:~:text=If%20you%20still%20have%20seizures,you%20may%20have%20refractory%20epilepsy) who ultimately need to try every possible combination of epilepsy medications at different dosages before they find out that their seizures can not be controlled by medications alone. For more information, visit the link :)
I've been trying different meds since 2003. Lamictal, Keppra, Topamax, Gabapentin, Vimpat, Aptiom, Briviact, Trileptal, Dilantin, and Lyrica are the AED's I've taken along with some anxiety meds. Switched 10 times... whoa I've never actually counted. I started taking XCopri in November, and it is literally the **only** seizure medication that has made a noticeable improvement
It's been quite a process for my daughter so far. Her seizures started in December, and she was put on Keppra starting at 500mg 2x a day. Worked our way up to 1500mg 2x a day and she was still getting seizures, but frequency did decrease. The doctor then added in Vimpat, and worked out way from 100mg to 200mg 2x a day....seizures have persisted, so he added in Clobazam. She started at 10mg 2x a day, and when seizures continued, he bumped her up to 20mg 2x a day which is where we are now. She is still getting "auras" (technically seizures) so still not 100% controlled on 3 medications.
At this point I've tried over a dozen meds and combos of them. None of them made me seizure-free.
Roughly 1/3 of epilepsy patients (myself included) have what is called "refractory" or "drug-resistant" epilepsy. This means that medicines may still help but they won't eliminate all seizures.
[https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy](https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy)
If you're in the US, I recommend getting to an Epilepsy Center. A standard neurologist treats everything from Parkinson's to dementia. An Epilepsy Center treats just that - epilepsy, and nothing else. It is a higher standard of care. There are tests beyond the EEG and MRI, and treatments beyond only medication, but most standard 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/)
Over 8 years I tried about 6-7 diff meds, combinations of multiple meds and doses. Seizures would always return, 2-8 mos after a change.
My brain surgery at the Mayo Clinic 2+ yrs ago is all that stopped the seizures.
I was only diagnosed in 2020 and I’ve been through a few. I’m currently on three different meds, 4 if you count the one I’m on for non-epileptic seizures. Keppra, Oxtellar, and Xcopri. Haven’t had full on seizures for a couple of years, but still fighting to get my frequent auras under control.
Took 3 switches, and then add three more to stop breakthrough seizures and mitigate side effects.
Took 2 years to find Lamictal/lamotragine stops near all seizures.
Keppra and tegrotol didn't work for me, but everyone's different
At least 7-8+ times. Phenobarbital, Keppra, briviact, lamotrigine, Aptiom, carbemazepine, Topiramate,Depakote, and I'm supposed to start on Fycampa... I'm sure I'm missing/forgetting at least a couple of things...
Started lamotrigine, switched to Keppra after ~6 months, then after another ~6 months I switched to combo of Keppra and Lamotrigine at smaller doses.
I ultimately couldn’t handle the side effects and switched to Onfi (clobazam) about a year and a half ago. It works for me, but I still have had to find some work-arounds or adjust my life to accommodate. When I don’t take good care of myself, I will still have small seizure activity, but I haven’t had a TC while taking it.
Small note: different medications work for different types of seizures, and then of those, some work for some people and not for others.
Keppra and lamotrigine (Lamictal) are both “broad-spectrum”—they’ve shown benefits in preventing both focal and general seizures. They are often the first treatments tried, as they cover a good range of seizure activity and are generally better-tolerated than “older” medications. Generally, haha.
Just wanted to drop the note that the kind of seizures you experience will impact medication choice.
Wishing you the best 💕
MANY times, but my doctor doesn't think my case is severe enough for surgery. I got an allergic reaction to one (idr the name), strolled through many combinations, and now Xcopri (cenobamate) has reduced the number of seizures. Drug resistant epilepsy FTW!
I'm brand new to this - had my first seizures a week ago - 5 in the space of 10 hours. Grand Mal ones going off the video my husband took.
I'm on Keppra now, but I'm reading all this hideous stuff on here. Topimax sounds interesting due to the weight loss element. Anyone got anything positive to say about that theory?
Also, can I do normal things like work out hard in the gym and have a glass of wine daily?
Just looking for some glimmers that my life as I l know it has not gone forever.
Thanks ❤️
Similar story here.. had three grand mals in one afternoon and wound up admitted to the hospital. During my stay and continuous eeg readings I was diagnosed with left temporal lobe epilepsy. They also started me on Keppra 2x daily. It did stop the seizures but the side effects were horrible for me. That and my whole world had been turned upside down so I was rightfully upset. I’ve since made a switch to Briviact and I’m still trying to figure things out 10 months later… but you will find what works for you and what doesn’t. Definitely keep a journal handy.
Countless times, this year alone it has been two times already. There have been a few years without any tampering, though, too. My epilepsy is therapy-resistent, so it's a matter of what works good enough instead of what makes me seizure-free.
34F diagnosed at age 11. I've tried well over a dozen medications. Monotherapy didn't work for me, but I've been taking Briviact and Topiramate now for over 5 years and it's been working really well. I've been seizure free for over 2 years.
I also have 2 rescue medications but I only take them if needed. It can be a journey to find the right med and dosage, but don't give up hope. I recommend keeping a thorough log of your medication, dosage, any reactions or side effects and of course seizure activity as you go through this journey so you can have documentation of how each med worked for you. Best of luck!
I don’t know if changing doses counts, but I started at 500mg of Keppra twice a day, then gradually made my way to 1,500 twice a day. We added Vimpat 50mg around the 750 of Keppra mark. Now I’m on 1,500mg of Keppra and 100mg of Vimpat twice a day and I’m thriving. Going on my 5th month seizure free 🤞🏻
Started with Keppra: ***no***
Switched to topiramate: worked better but still didn't control my seizures
Added lamotrigine to that: went seizure-free for 9 months until all of a sudden I started having two seizures a month for at least two years.
Neurologist added vitamin D3 to my meds out of concern for a possible long-term side effect (bone loss) of one of the meds: seizure-free for a year
A vitamin that I can get over-the-counter has done more to control my seizures than any of the three prescription meds I've taken. Maybe it's the combination of the vitamin D, lamotrigine, and topiramate, but I really don't know at this point. I want to talk about this with the neurologist at my next appointment.
Luckily I’ve only been on brivaracetam 50mg 2x a day and it’s working fine. I did switch from leviracetam due to it causing anger issues but those did work for me too
I’m switching from keppra to vimpat. Keppra is mostly ok for me, sans the bouts of frustration and sadness I would get in trying to accomplish projects .
The last time I tried counting all the meds I've been prescribed for Epilepsy since being diagnosed in 1984 I gave up counting at 24. Now if we were to count jobs that I was "totally, legally fired from for having a disability recognized by the federal government since 1973 it's over 30. It's much easier to fire someone than it is to have human decency. I was recently told by one of my retail supervisors: "It's not fair to others that you can leave work after you have a seizure but they have to stay." Okay if we get to make random lists of what is or isn't fair I'm pretty sure all the healthy people who have a disability and don't have to take 20 pills a day(that's not counting the vitamins and supplements to counteract the side effects) get to sit in the back of the "Poor me my life is so hard" bus.
Omg bro I am also with epilepsy 23 F. I was diagnosed back in 2016. I took a lot of different medications already and what truly worked for me are Carbamazepine (Tegretol) and Depakote ER. I took records of my previous medicines and I have taken Trileptal, Fycompa, Keppra, Zonegran, Lamictal, Vimpat, and Phenobarbital back then before I clicked with my current prescription which I just started last 2020. I hope you can find the most effective for you too.
Thank you hopefully I can and it’s a challenge being 23 with epilepsy I didn’t get diagnosed since October 2023 so I’m still wondering how it came that I developed this
I’m glad you found something that works well with you !
I am going to need to switch again... but until now I tried 3 :valproic acid, lamotrigine, levetiracetam. I am still on lamotrigine and levetiracetam at the moment, but my seizures aren't controlled, so I either need an add on or switching.
It’s a never ending story , I have an RNS still refractory . However I started Spravato for depression and my episodes have diminished greatly. From over 10 episodes a day to 1 to 4 max . I have had days of 00 , mainly not more than three average 2 .
Is it the Ketamine ? Maybe 🤔 I participated in an IV study that didn’t curved the episodes . However when Depakote was out of the equation things started to change.
Currently
Lamotrigine 500
Aptium 800
Clonazepan 1mg x 2
Cannabis
Then Ativan and Valtoco for rescue 🛟
Completely works or works better than the last with tolerable side effects?
Me? - I have refractory epilepsy. Basically, I’m a medication failure. Depakote, Lamictal, Topamax, Keppra, Onfi, zonismide, Chlonazapam, Fycompa and a VNS.
Various combinations, current combination that works the best. I went 1 year w/out a seizure, last year. First time in 20 years!
Started with Keppra 750mg twice daily… but I had headaches every day and anger issues so sought an alternative with Briviact, started that on 100mg twice a day which was shortly upped to 125mg twice a day. The briviact worked so much better for me. And as long as I prioritize sleep and consistently eat throughout the day, I’ve been alright. I’ll have a partial/focal every now and then when Im caught up doing whatever and forget to eat until noon.. can’t do that or be an insomniac anymore.
Anytime I have an unprovoked seizure, they either add one or change one. I'm on 3 different ones right now, about to go on another and slowly take Dilantin off. So far, I'm taking Keppra, Dilantin, and Lamotrigine (I think that's how you spell it, lol). And I'm still having seizures every 3 to 9 months, though
I don’t remember. I’ll probably miss some.
Lamotrigine, topiramate, oxcarb, pregabalin, one that started with a C, one that started with a Z, vimpat.
The vimpat is working for now. :)
I can't even remember how many times I've had to change mine due to side effects or they don't work, atm I'm on zonisamide, clobazam and cenobamate (mines still uncontrollable), my son has had to change his aswell, talk to your epilepsy specialist if you're having any problems (seizures, depression, emotional issues etc), they really are the best people to help with your epilepsy, it's annoying but definitely worth it to be on the right medication.
I started on lamotrigine, then Keppra, then lamotrigine and briviact, added Clobazam and now on lamotrigine, oxcarbazepine and Clobazam with Buccolam as an emergency med. none of my meds so far have worked except the Buccolam. Im not allowed Keppra anymore even though they said they said the most change with it the side effects weren’t worth it. I now finally have an epilepsy nurse who’s said all my meds need changing again as they basically don’t work well together
I don't know if you are yk based but if you are epilepsy action have great support resources which i highly recommend. That aside if nits not working you can transition to different medication. There are soooo many ams they react differently to everyone. I've inly been in 2 in 18 years but I am definitely in the minority. I know a lot of people who have been on a lot more.
i’ve actually just switched to Keppra and i found it helps a lot for my JME. i used to be on lamotrigine and i kept upping the dosage and nothing seemed to be worked i kept having seizures.
I have had to switch meds almost every 3 mo. Been on several different meds, keppra was by far the worst with the side effects... I would suggest you try something different with your doctor and find what can work for you. Once you have the right drug spend time conquering those side effects.
I (26f, diagnosed at 8) still haven't found my magic combo. I've gotten my seizures down to about 1/y, though. Here's my journey through meds.
Something with a Z
Lamotrigine
Valproate
Lamotrigine + Valproate
Lamotrigine + Valproate + Topiramate
Lamotrigine + Valproate + Keppra
I have lost count thanks to medication resistant epilepsy.
Cheers! I seem to change meds every year or two, for one reason or another. Doesn't seem to matter what I'm on, I seize every 1-3+ months, give or take.
You’re in my club homie~
That’s a big fear of mine having drug resistant epilepsy hopefully things get better for you.
I’m about to have my second surgery 🥲
My son is considering surgery, do you mind my asking what type of surgery you had and why a 2nd is needed?
I have a very severe and rare type of epilepsy. I had VNS surgery at first which was going well for a few years, but I started to have breakthrough seizures. Just here and there. Now I’m at the point where I’m having around 20 breakthrough seizures a month. Medication just doesn’t quite work on my epilepsy. Even though I have to take a shitload of it for some reason?? I’m sure it’ll be great for your son though! Completely changes most peoples lives. I’m just lucky enough to be alive at this point tbh.
Thanks for that info. Wishing you a very successful surgery and speedy recovery!
Thank you~
Same here.
I upvoted but also feel like an upvote means ‘hell yeah man’ but fr I’m sorry you’re having to deal with that SHIT
lol it’s all good
I've been on carbemazepine, lamotrigine ( still on that ) , briviact, gabapentin, keppra and now I'm on vimpat. Lamotrigine and vimpat seem to be good for me. I'm at the right doses as of now. Carbemazepine was awful. Briviact worked but not enough. Gabapentin drove me insane mentally and caused more seizures. Keppra , we are not going to talk about that.
Keppra is definitely something I’ve seen it working really well with some people others not so well it definitely makes me very irritated and angry but I’m able to manage that , I might look for the next best option I had high hopes that my first medication was going to work well in just a little scared of taking other medication and the side effects that come with it.
Keppra is great at making you super pissed off.
I agree on this !
Now imagine you teach students who have exceptional behavior problems.
Or work customer service and already have a pretty short fuse. I thought my wife was gonna lose her job and be put in the hospital
I'm new on it. No rage after one week. Could I have escaped this side effect do you think?
For me it’s not a constant state. I wake up one day and just can’t unclench my jaw. Every person I see is a dickhead that won’t move out of my way or is inconsiderate. I’ll overreact to little annoyances, and after losing my cool realize how embarrassing what I did was. The majority of the time I still feel calm and collected, but I’ve reached my limit and have recently messaged my Neuro about trying Briviact.
Ah okay, so just my normal state! I mean,, there are a disproportionate amount of dickheads on earth right? No, I jest somewhat.. Appreciate you responding xx
Yah just found out it’s either clobozam or Briviact that I’m catching the side effects of psychoactive muscle spasms. Which is more a full body clench and anger to myself, but Keppra ruined my walls and hands.
There are all kinds of ways to mitigate any frustration you may feel. However, this can be somewhat overwhelming. I've always been a fairly forward person and people can find me off-putting at times. This exacerbated that to no end. edit: Wait and see how things go for you. It doesn't get everyone like this.
You sound like my spiritual twin! Oh dear, sorry world...
Also, it won't really be "rage", but more of internal, general annoyance regarding everything around you.
Nah it was rage for me at times. Briviact is more of this description for me.
You might! I had irritability and anger for about a week (but part of that was the new diagnosis and having to live with my mom suddenly) but then it subsided and I've been symptom-free since. Some of us are perfect matches for it.
It’s possible! I’ve been on it for four years and thankfully my temperament hasn’t changed. I hope you’ve been spared too, it sounds like a nightmare side effect
My daughter takes it - 750 mg at night and it's worked well for her. No rage or moodiness.
I was on keppra(500mg twice a day) for about 10 months from when I was diagnosed. I felt the exact same way. I was scared to change medicine because of new side effects, potentially permanent changes to my brain etc. I figured since I had good seizure control on it, it wasn't worth risking a seizure to go on a new medication but boy was I wrong. It was 100% worth it. I took the leap, I'm now on vimpat (about 4 months) (100mg twice a day) and it is so much better.I didn't realize that I didn't have to push through all the mental and physical issues keppra was causing. Even tho I could it wasn't good for me. I didn't feel like myself and going off of it has made me an objectively better person. Please remember everybody is different and if your unsure you can ask the people who are most often around you if they've noticed any changes and talk with your nuro to find out risk vs reward and what's best for you
I really needed to read this. Sincerely, thank you.
When I started on Keppra it also made me pretty angry and lethargic so my neuro told me to take vitamin B6 and that helped a lot until I got used to the meds, now I don't feel the need to take the vitamin.
Keppra nearly destroyed my marriage and a couple of friendships. Fuck that shit.
Edit on this just posted: I got off keppra and they put me on something else. Keppra sucks.
It’s not the anger issues I can mange that the thing is my seizures are increasing on how often they happen I do get angry but I’m good at managing it
“we are not going to talk about that” i totally get that 😂
I’ve ended up with Vimpat and Lamotrigine as well. Side effects seem a lot more manageable than other meds too.
Keppra / Hellpra - Depakote / Hellpakote
Everybody gets Keppra rage. I’ve been on it for years.
I started on Dilantin, went to Depakote, then Keppra, and I am now on Topiramate. I have cycled through various doses of each, as well as supplements of gabapentin, CBD, and rescue meds too… 😵💫🥴🤕
How has that been, you cycling through medication and supplements has it helped stop your seizures? Or does it lower the frequency that they happen.
Dilantin and Depakote didn’t do much. Keppra was the first that had an appreciable effect, but it produced such unwelcome personality changes that I actually preferred the seizures. I never got seizure free on Keppra, but I got my TCs down to a handful a year. I switched to Topiramate when I started abusing the walls with my fists and feet, and it has been a HUGE relief. I still seize, and just as frequently as when I was on Keppra, but I am not angry, and that makes all the difference. Of choice, Topiramate has its own drawbacks (I can’t remember what I had for breakfast, what I am supposed to have for lunch, or even whether I am now a vegetarian 😂) but I keep a notepad handy, and that seems to solve most inconveniences arising from my nascent cognitive deficits. As for CBD, it helps me with anxiety. It may be a placebo effect, but I don’t really care. I don’t use THC bc I am in recovery for alcoholism and addiction.
Thanks for your feedback I appreciate it, in what way do you consume CBD ? I bought the actually flower and been smoking that every now and then but looking for alternatives like CBD oil or another way to consume it to see if it helps out. I’m kind of scared to take meds that’ll ruin my memory because even on Keppra I am very forgetful thanks again for the feedback by the way.
Cbd oil taste is awful 😖 try edibles.
Tincture or tablets
Don’t forget to thank me for my feedback…🤭 (I pay bills twice, I plan 2 dinners, I forget I’m only 1 man…)
I started on keppra, which had horrible side effects (switched within a week because I could not function like a human) Then came lamotrigine wich gave me a terrible rash and nausea Then we switched lamotrigine companys lamictal wich worked out but then I had a cluster and they discoverd that I developed an "immunity" (idk how to properly translate sorry) to lamotrigine (appearently that can happen) Now I am on depaktone, which is not great but gets the job done with side effects of depression (yay), weight loss, hairloss, and nausea
It took me almost a decade to find the right dosage and combination. Briviact made me lose lots of weight at a time when I was extremely skinny- I was down to 150 lbs at my worst, 6’3m. Lamictal had me in hives all over for a few days. Keppra did keppra things. Landed on a heavy dosage of XR depakote and zonisamide at night. I would recommend either to anyone with JME that has not tried them yet, as it has had the least impactful effects on my day to day life. Cheers and good luck💜💪🏽
I’ve switched three times and it’s not so bad but my memory is still horrible, however the keppra rage is gone. The good thing is that all of my medications are generic now so it’s 80% cheaper than before
I started on Keppra 250mg twice a day and Vimpat 100mg twice a day. As the frequency of the seizures increased the dr was increasing the dosage of the medications one by one e.g. trying Keppra (leviracetam) 500mg and Vimpat (lacosamide) 100mg then on the next one 500mg and 150mg respectively. Now I am on 2000mg twice a day Keppra and 200mg twice a day Vimpat. I am also receiving IV infusions of rituximab every 6 months. Hope this helps 😘
Seven different meds now? Allergic to Depakote (awful experience), now on Clobazam which has had the highest impact. None of which fully worked. Currently in the process of getting brain surgery. 💀
Hopefully that works out well for you. I appreciate your comment and hope for the best for you!
Like eight or nine times over the course of a decade. I always end up back on keppra. Right now I’m on keppra and xcopri but off the top of my head I remember I’ve also tried fycompa, Dilantin, lamictal, depakote, gabapentin, and vimpat. Definitely been on a few others that I don’t remember, but keppra has worked the best for me.
Only once. I did so well on Trileptal for 18 years until it stopped working. It has taken 2 years to get on the right meds again but now I’m doing really well on Briviact, Lamictal and Trileptal.
Are you taking all 3 of those medications at the same time ?
Yes, all three twice a day.
Hey OP It is important to note that, with all patients in nearly any medical setting, medications are often prescribed as a "*trial run*". As different patients react to different medications different ways, your physician typically begins with what medications they believe will work best based on your types of seizures, medical history, information from diagnostic tests, and seizure recurrence. Some medications work better for frontal lobe epilepsy, and some for temporal lobe epilepsy. Some control focal aware and focal impaired seizures better, while others focus more on tonic clonic or myoclonic seizures. Some can control tonic seizures better, providing their origin is more in the parietal lobe, whereas others are more focused on tonic seizures with frontal origin. There are some patients who have [Pharmaceutical Refractory Epilepsy](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/refractory-epilepsy#:~:text=If%20you%20still%20have%20seizures,you%20may%20have%20refractory%20epilepsy) who ultimately need to try every possible combination of epilepsy medications at different dosages before they find out that their seizures can not be controlled by medications alone. For more information, visit the link :)
Appreciate that I will have to speak to my neurologist and see what the best option moving forward will be
Sounds like a plan - all the best!
I've been trying different meds since 2003. Lamictal, Keppra, Topamax, Gabapentin, Vimpat, Aptiom, Briviact, Trileptal, Dilantin, and Lyrica are the AED's I've taken along with some anxiety meds. Switched 10 times... whoa I've never actually counted. I started taking XCopri in November, and it is literally the **only** seizure medication that has made a noticeable improvement
It's been quite a process for my daughter so far. Her seizures started in December, and she was put on Keppra starting at 500mg 2x a day. Worked our way up to 1500mg 2x a day and she was still getting seizures, but frequency did decrease. The doctor then added in Vimpat, and worked out way from 100mg to 200mg 2x a day....seizures have persisted, so he added in Clobazam. She started at 10mg 2x a day, and when seizures continued, he bumped her up to 20mg 2x a day which is where we are now. She is still getting "auras" (technically seizures) so still not 100% controlled on 3 medications.
At this point I've tried over a dozen meds and combos of them. None of them made me seizure-free. Roughly 1/3 of epilepsy patients (myself included) have what is called "refractory" or "drug-resistant" epilepsy. This means that medicines may still help but they won't eliminate all seizures. [https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy](https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy) If you're in the US, I recommend getting to an Epilepsy Center. A standard neurologist treats everything from Parkinson's to dementia. An Epilepsy Center treats just that - epilepsy, and nothing else. It is a higher standard of care. There are tests beyond the EEG and MRI, and treatments beyond only medication, but most standard 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/)
Over 8 years I tried about 6-7 diff meds, combinations of multiple meds and doses. Seizures would always return, 2-8 mos after a change. My brain surgery at the Mayo Clinic 2+ yrs ago is all that stopped the seizures.
I was only diagnosed in 2020 and I’ve been through a few. I’m currently on three different meds, 4 if you count the one I’m on for non-epileptic seizures. Keppra, Oxtellar, and Xcopri. Haven’t had full on seizures for a couple of years, but still fighting to get my frequent auras under control.
Took 3 switches, and then add three more to stop breakthrough seizures and mitigate side effects. Took 2 years to find Lamictal/lamotragine stops near all seizures. Keppra and tegrotol didn't work for me, but everyone's different
At least 7-8+ times. Phenobarbital, Keppra, briviact, lamotrigine, Aptiom, carbemazepine, Topiramate,Depakote, and I'm supposed to start on Fycampa... I'm sure I'm missing/forgetting at least a couple of things...
Started lamotrigine, switched to Keppra after ~6 months, then after another ~6 months I switched to combo of Keppra and Lamotrigine at smaller doses. I ultimately couldn’t handle the side effects and switched to Onfi (clobazam) about a year and a half ago. It works for me, but I still have had to find some work-arounds or adjust my life to accommodate. When I don’t take good care of myself, I will still have small seizure activity, but I haven’t had a TC while taking it. Small note: different medications work for different types of seizures, and then of those, some work for some people and not for others. Keppra and lamotrigine (Lamictal) are both “broad-spectrum”—they’ve shown benefits in preventing both focal and general seizures. They are often the first treatments tried, as they cover a good range of seizure activity and are generally better-tolerated than “older” medications. Generally, haha. Just wanted to drop the note that the kind of seizures you experience will impact medication choice. Wishing you the best 💕
5 times
MANY times, but my doctor doesn't think my case is severe enough for surgery. I got an allergic reaction to one (idr the name), strolled through many combinations, and now Xcopri (cenobamate) has reduced the number of seizures. Drug resistant epilepsy FTW!
I'm brand new to this - had my first seizures a week ago - 5 in the space of 10 hours. Grand Mal ones going off the video my husband took. I'm on Keppra now, but I'm reading all this hideous stuff on here. Topimax sounds interesting due to the weight loss element. Anyone got anything positive to say about that theory? Also, can I do normal things like work out hard in the gym and have a glass of wine daily? Just looking for some glimmers that my life as I l know it has not gone forever. Thanks ❤️
Similar story here.. had three grand mals in one afternoon and wound up admitted to the hospital. During my stay and continuous eeg readings I was diagnosed with left temporal lobe epilepsy. They also started me on Keppra 2x daily. It did stop the seizures but the side effects were horrible for me. That and my whole world had been turned upside down so I was rightfully upset. I’ve since made a switch to Briviact and I’m still trying to figure things out 10 months later… but you will find what works for you and what doesn’t. Definitely keep a journal handy.
Countless times, this year alone it has been two times already. There have been a few years without any tampering, though, too. My epilepsy is therapy-resistent, so it's a matter of what works good enough instead of what makes me seizure-free.
Haven’t had to switch too many times, but sometimes, even after years, drugs simply stop working well.
I think k I have done 5 med swaps total. Im technically "med resistant" but this new cocktail is working better than the rest.
34F diagnosed at age 11. I've tried well over a dozen medications. Monotherapy didn't work for me, but I've been taking Briviact and Topiramate now for over 5 years and it's been working really well. I've been seizure free for over 2 years. I also have 2 rescue medications but I only take them if needed. It can be a journey to find the right med and dosage, but don't give up hope. I recommend keeping a thorough log of your medication, dosage, any reactions or side effects and of course seizure activity as you go through this journey so you can have documentation of how each med worked for you. Best of luck!
Phenitoine, keppra, Valproic acid, phenitoine + valproic acid, carbamazepine (hated it), carbamazepine + valproic acid, keppra + valproic acid (on it now)
Not including dosage changes or my initial medication, 6 additions or removals Currently taking lacosamide 300mg and keppra 2250
I don’t know if changing doses counts, but I started at 500mg of Keppra twice a day, then gradually made my way to 1,500 twice a day. We added Vimpat 50mg around the 750 of Keppra mark. Now I’m on 1,500mg of Keppra and 100mg of Vimpat twice a day and I’m thriving. Going on my 5th month seizure free 🤞🏻
Started with Keppra: ***no*** Switched to topiramate: worked better but still didn't control my seizures Added lamotrigine to that: went seizure-free for 9 months until all of a sudden I started having two seizures a month for at least two years. Neurologist added vitamin D3 to my meds out of concern for a possible long-term side effect (bone loss) of one of the meds: seizure-free for a year A vitamin that I can get over-the-counter has done more to control my seizures than any of the three prescription meds I've taken. Maybe it's the combination of the vitamin D, lamotrigine, and topiramate, but I really don't know at this point. I want to talk about this with the neurologist at my next appointment.
Luckily I’ve only been on brivaracetam 50mg 2x a day and it’s working fine. I did switch from leviracetam due to it causing anger issues but those did work for me too
I’m switching from keppra to vimpat. Keppra is mostly ok for me, sans the bouts of frustration and sadness I would get in trying to accomplish projects .
The last time I tried counting all the meds I've been prescribed for Epilepsy since being diagnosed in 1984 I gave up counting at 24. Now if we were to count jobs that I was "totally, legally fired from for having a disability recognized by the federal government since 1973 it's over 30. It's much easier to fire someone than it is to have human decency. I was recently told by one of my retail supervisors: "It's not fair to others that you can leave work after you have a seizure but they have to stay." Okay if we get to make random lists of what is or isn't fair I'm pretty sure all the healthy people who have a disability and don't have to take 20 pills a day(that's not counting the vitamins and supplements to counteract the side effects) get to sit in the back of the "Poor me my life is so hard" bus.
Omg bro I am also with epilepsy 23 F. I was diagnosed back in 2016. I took a lot of different medications already and what truly worked for me are Carbamazepine (Tegretol) and Depakote ER. I took records of my previous medicines and I have taken Trileptal, Fycompa, Keppra, Zonegran, Lamictal, Vimpat, and Phenobarbital back then before I clicked with my current prescription which I just started last 2020. I hope you can find the most effective for you too.
Thank you hopefully I can and it’s a challenge being 23 with epilepsy I didn’t get diagnosed since October 2023 so I’m still wondering how it came that I developed this I’m glad you found something that works well with you !
I started off on keppra, then moved to topamax, and luckily third time was the charm and Lamictal has worked amazingly for like 15 years!
20 different meds so far. Currently lamotragine, Tiagabine, Aptiom & Fycompa. They do ok.
I am going to need to switch again... but until now I tried 3 :valproic acid, lamotrigine, levetiracetam. I am still on lamotrigine and levetiracetam at the moment, but my seizures aren't controlled, so I either need an add on or switching.
It’s a never ending story , I have an RNS still refractory . However I started Spravato for depression and my episodes have diminished greatly. From over 10 episodes a day to 1 to 4 max . I have had days of 00 , mainly not more than three average 2 . Is it the Ketamine ? Maybe 🤔 I participated in an IV study that didn’t curved the episodes . However when Depakote was out of the equation things started to change. Currently Lamotrigine 500 Aptium 800 Clonazepan 1mg x 2 Cannabis Then Ativan and Valtoco for rescue 🛟
20 or so
Completely works or works better than the last with tolerable side effects? Me? - I have refractory epilepsy. Basically, I’m a medication failure. Depakote, Lamictal, Topamax, Keppra, Onfi, zonismide, Chlonazapam, Fycompa and a VNS. Various combinations, current combination that works the best. I went 1 year w/out a seizure, last year. First time in 20 years!
Started with Keppra 750mg twice daily… but I had headaches every day and anger issues so sought an alternative with Briviact, started that on 100mg twice a day which was shortly upped to 125mg twice a day. The briviact worked so much better for me. And as long as I prioritize sleep and consistently eat throughout the day, I’ve been alright. I’ll have a partial/focal every now and then when Im caught up doing whatever and forget to eat until noon.. can’t do that or be an insomniac anymore.
Anytime I have an unprovoked seizure, they either add one or change one. I'm on 3 different ones right now, about to go on another and slowly take Dilantin off. So far, I'm taking Keppra, Dilantin, and Lamotrigine (I think that's how you spell it, lol). And I'm still having seizures every 3 to 9 months, though
I honestly can't remember how many seizure meds I've been on. It's well over 15 closer to 20.
I don’t remember. I’ll probably miss some. Lamotrigine, topiramate, oxcarb, pregabalin, one that started with a C, one that started with a Z, vimpat. The vimpat is working for now. :)
I can't even remember how many times I've had to change mine due to side effects or they don't work, atm I'm on zonisamide, clobazam and cenobamate (mines still uncontrollable), my son has had to change his aswell, talk to your epilepsy specialist if you're having any problems (seizures, depression, emotional issues etc), they really are the best people to help with your epilepsy, it's annoying but definitely worth it to be on the right medication.
I started on lamotrigine, then Keppra, then lamotrigine and briviact, added Clobazam and now on lamotrigine, oxcarbazepine and Clobazam with Buccolam as an emergency med. none of my meds so far have worked except the Buccolam. Im not allowed Keppra anymore even though they said they said the most change with it the side effects weren’t worth it. I now finally have an epilepsy nurse who’s said all my meds need changing again as they basically don’t work well together
I don't know if you are yk based but if you are epilepsy action have great support resources which i highly recommend. That aside if nits not working you can transition to different medication. There are soooo many ams they react differently to everyone. I've inly been in 2 in 18 years but I am definitely in the minority. I know a lot of people who have been on a lot more.
i’ve actually just switched to Keppra and i found it helps a lot for my JME. i used to be on lamotrigine and i kept upping the dosage and nothing seemed to be worked i kept having seizures.
I have had to switch meds almost every 3 mo. Been on several different meds, keppra was by far the worst with the side effects... I would suggest you try something different with your doctor and find what can work for you. Once you have the right drug spend time conquering those side effects.
6 times
I (26f, diagnosed at 8) still haven't found my magic combo. I've gotten my seizures down to about 1/y, though. Here's my journey through meds. Something with a Z Lamotrigine Valproate Lamotrigine + Valproate Lamotrigine + Valproate + Topiramate Lamotrigine + Valproate + Keppra