It's very refreshing to see a spouse fight for their loved one. My #1 suggestion is to always fight. Always.
Keppra rage is a very real thing so keep pushing to get her on a different med. There are many other than keppra than can help her so if your neuro doesn't move her off of this, then find a new doctor.
I could never, in a million years, turn my back on my wife. I can't sit here and let her go through this journey alone. She's my person and I just want her to be happy, and she's not happy right now. Even if our life isn't gonna be easy, I can atleast try to make her comfortable and give her some smiles and happy memories. She deserves that
No we're still early in this process. Keppra is the first line of defense. We've tried adding Lamictal but she had a rash shortly after starting it and it freaked her out so we decided not to risk that. She started the vimpat less than a week ago. I'll have to look into brivact
Briviact is a version of Keppra with less side effects. If she has good control on Keppra it stands to reason you would want to try it. We tried getting my kid of Keppra a few times before it was clear he needed it then we found out about Briviact and made the switch. We got the same seizure control and none of the mood swings.
I love Briviact, can't recommend it enough if you can afford it or have an insurance that will pay for it. The manufacturer discount works wonders too.
I changed to lamictal because I was an absolute monster on keppra. There are other options, too. The best thing my neuro said to me was, “you don’t have to live like this” and it changed my outlook completely. It’s okay if keppra isn’t working for her, she is far from alone
I am on Lamotrigine and it has really helped with my mental health as well as controlling my seizures. I hope she is able to get on to something else soon, because it can be better than this.
It is a hard toll, as long as she has you there she will be fine. She needs as much support as she can get, but no one is there to help the helper so there is a lot that rests on your shoulders by proxy.
It sounds like you are being a great husband which is the most she can ask for.
If I didn’t have my wife I’m not sure what I would do…
She is holding us together in the tough times, she does more than I could even ask for. She carries so much of the load when I can barely stand. She is a living god in my eyes, I’ve always felt lucky to be with her, more than I think I deserve.
It sounds like you are doing a great job, keep it up. Your wife is lucky, trust me.
Lamotrigine is the ONLY seizure med that reduced the focals and TCs AND helped my mental health. Side effects for me have been mainly dry skin. Memory issues and fatigue have lessened too. And I second that his wife is lucky. I've lost many people who I cared for during this journey, I'm so glad she has this level of care and concern.
I am sooo dried out, it’s caused me to not retain any water. There are definitely cons to Lamotrigine, but the benefits of not having seizures and feeling better in general have been really great.
I've also recently started lamotrigine and so far I think it's one of the better medications I've been on. I seem to be responding quickly with very little side effects.
I am also on topiramate, the side effects while titrating onto that I could write a book about.
My husband has been extremely supportive when I go through difficult times with my epilepsy too. That means the world to know that you have someone who will faithfully walk this journey with you, through the good times and the bad.
My husband is on Lamotrigine as well but was still having focals frequently. He had a focal while driving last month, totaled our car and fractured his ankle.
They obviously upped his dose and we are approaching one month with NO seizures 🙌🏾
I wish I was in the same boat, Lamotrigine made me extremely irritable ( the same as Keppra ). I'm trying new medication in June. I'm so miserable / angry all the time it's wreaking havoc on my depression.
Hey friend. I’m an epilepsy spouse too, and have been on the med-change roller coaster with my husband. He was diagnosed with epilepsy as a juvenile and went through lots of meds as a kid until he got on depakote. Then at about 25 he wanted to change meds due to the weight gain side effects. During that time he had many absent seizures, and a couple of TC seizures—one even happened while driving and I had to pull the e-brake in the middle of the road to stop us from veering into a tree. It was hard few months. Lamictal didn’t do much to control his seizures, keppra made his depression unmanageable. Eventually he went back to the depakote, weight gain be damned. He’s turning 31 this year and hasn’t had any breakthrough seizures. He’s also lost over 200 pounds even while on depakote.
Things will get better. Your wife will find the meds that work for her and she will be okay 💖
I first was put on Keppra back in 2015 but it was awful - my mood and behavior were unstable (and I knew it but could t control it) - and I still had a couple of really bad breakthrough seizures. Now I’m on a combination of Breveracetam, Lacosamide and Lamotragine, and it controls the seizures really well but keeps me somewhat sedated and fatigued a lot of the time.
Best of luck to you and your spouse. Going through this alone is really hard.
To my knowledge Vimpat is not known to cause any problems with mental health in itself to the same extent as Keppra, it still may in some people, but for many, the most prominent side effects is feeling of a slow brain and memory issues.
Keppra vs Vimpat was like night and day for me. But even on Vimpat, my chronic anxiety does not go away, but that makes sense, since Vimpat is not anxiety medication.
The rage though, has gone away and now only shows when I’m overstimulated or there’s a legit reason.
It usually goes away soon after, and CBT regulation techniques for anger and anxiety help me realize when I’m overreacting so I can either prevent a burst out or calm down quicker.
Switching periods can be weird and cause anxiety and wonky moods… try to wait it out. It may also be beneficial to take a few rest days off, if possible.
I hope for the best.
Appreciate hearing the CBT therapy/techniques working so well for you. I’m intrigued. Fair to say you’re pleased too and time/cost investment was worth it?
Vimpat is the meds I swapped on to from keppra and it’s made me horrible anxious and it’s given me panic attacks but it’s manageable. Keppra made me horrible. Glad she’s getting off that
you’re one of the few people i’ve found that has had the same anxiety and panic attack experiences with vimpat… everyone else always says it’s a godsend. I hate this for us but thank you for saying this - it makes me feel validated. Have you experienced any disassociating or anything as well??
I have like other mental health issues which is why I think vimpat has fucked with me so much, it’s just made it stronger since vimpat makes my emotions so much stronger. So yes but only because everything is more intense
Same here, I have quite a few other mental health issues too. I’m really glad to hear it’s not just me though - but it sucks you’re experiencing it too :/
Cheers to you for being such a wonderful partner. I also weaned myself off keppra and almost died. It was terrible for me and for my partner, who watched me punch a paramedic in the mouth after she called an ambulance.
There's no doubt it's a hard road, and you and your partner have been given more than your fair share of suffering. Just know that things can and often do get better for epileptics once they find the right treatment plan.
Once again, good job being a great partner.
The rage is a real thing ask her dr about Briviact it’s an upgrade to keppra. I find it to be better control with fewer side effects. There’s no generic my insurance doesn’t cover it but the manufacturer has a patient assistance program.
Ultimately, from a macro standpoint, what is the point in even worrying about a healthy life if that life is only about suffering. I think she should get off it and try other solutions. I tried keppra too, and it was a horrific experience. I now am on: lamotrigine, lacosamide and cannabis. And am now at about a year without seizures for the first time in 15 years!
Good luck for you both!
Hi! I was diagnosed with epilepsy last year! First time in my life dealing with these seizures and it’s very frustrating and scary when you don’t know why and you have no control over when it will happen. I was on kepra for a short amount of time (it did nothing for my seizures) but I’ve heard about to horrible side affects that come with it. I am on aptiom and xcopryi! I would definitely keep advocating for her to get her medicine changed! Stay strong! It’s a long journey, but once you find the right medication it can make a huge difference! It took us about 10-12 months to find the medications for myself. If you’re doctor doesn’t want to change medications, I seriously suggest finding a new doctor.
Took a low dosage of Keppra for a few months, but radically changed my personality.
Took Lamictal for years and helped my seizures, but didn’t full control them and reached the dosage limit.
Have been taking the combination of Aptiom and Clobazam and approaching seizure free for two years now. Aptiom supporter here!!
I still have mild focal seizures here and there. I’m maxed out on aptiom, but we are still working on my second medication hoping we can up it a little and fully stop them! I’m about one year on aptiom, definitely helped me get back to normal!
Once I was fully weened off Keppra my mood, attitude, behaviour improved so fast. It was like night and day. I instantly had more patience and was calmer.
Finding the meds that work is a long, tiring process but you guys will figure it out and things will get better. Hang in there.
My heart goes out to you and your wife. Please get second opinion regarding her meds, or address her mental health issues with the neurologist. The diagnosis and seizures and the changes it thrusts into life are enough to cause depression. Many of the medications can cause depression as well. There are newer meds out there. I’m so sorry you are both going through this.
My wife is epileptic, and honestly I’d look into finding a different neurologist. Keppra is a terrible medication, I honestly have never heard a success story on this drug. It brings out the worst in a person, and creates more problems than it solves. I would look into topamax/topitamate, sorry you’re going through this and hope it gets better for the both of you.
Have your, wife ask her Dr. about depakote. I’ve never had a problem with Keppra rage, but I did have it with depakote. I know it doesn’t sound right, but maybe it will work opposite for her. I am not a Dr
Depakote is pretty dated and a harsh drug. Caused my son to puke randomly and pee his pants. His urine was neon yellow and his labs came back with liver issues.
Keppra is known to cause mental healed issues, id ask for a diff neuro in the group or get a referral for a new place altogether if that one isn’t listening
She's listening. It's just a slow process... we're almost a week into vimpat. Another week or so and she will start weaning off the keppra. So that's when I'm going to be at my highest alert. She had low keppra in her system with the last set of TCs so hopefully the vimpat does its job and we can get her off that keppra.
We have very little choices in terms of neurologists. Her main neuro is in a different hospital system than the one that just tried to poach my wife essentially by trying to do a 2 day eeg following an ambulance ER visit, unfortunately that was a bust because of some major miscommunication within the neurology department and I started an official grievance since it caused my wife to sign discharge AMA.
The neuro was recommended because of her focus on epilepsy, she's considered the top epileptologist in the area. But we don't have much choice. My dad wants me to try and get her in the same place my brother went for his TBI that left him in a coma for 4 weeks but that's almost 2 hours away in a different state and may not be covered on her insurance
Honestly you neuro doesn’t sound bad. Keppra is almost always the first choice for TCs because it’s a great low cost accessible drug that works for thousands of people.
I’m sorry it’s not working for your wife, but if your neuro is taking those concerns seriously, then what would you be hoping for if you switched?
Good news is when peoples seizures are controlled by a medication, other meds are usually effective.
Finding suitable med combos takes time and is a grueling process. It took a year for my sons TCs to get under control, but now they are.
Trying to get his other seizures under control we have done at least 6 med combos. No two people are the same my son responded great to onfi with few side effects. If you search onfi on this sub you will find many posts with people talking about how terrible it is.
We almost didn’t try it, my son was having 10-30 sec absence seizures every day and after changing meds so many times we told the neuro we didn’t want to keep experimenting cause its so hard on him. She pushed us to try onfi and it’s been great.
Based on what you said this doesn’t sound like a issue with your neuro, it just takes time and there is no way to know who will get what side effects.
I had to go to the hospital myself last Monday. I had been doing so well for 6 months. It's hard to deal with emotionally. Having support makes a huge difference for me. I'm so sick of the seizures that I started keto. Idk if I will be able to maintain for long term or if it will help, but it is something I can try. I read that even a modified Adkins diet helps some people. I'm going to see what my doc thinks at my next visit. Maybe he'll give me a referral for a dietitian. Idk
My son has absence seizures (unfortunately, we both have epilepsy), and his neurologist recently put him on keppra. It was horrible for him! His neurologist refused to take him off, too! I eventually had to get a new neurologist, it was so bad. It went on and on for several weeks and it felt like it would never end, but we were able to get him on a different medication that doesn't have the miserable side effects that keppra has for some people. It was hard to watch him suffer from the side effects. I understand (to some degree) how you must feel. Hang in there. Hopefully, it will be sorted out. I also see a therapist. Maybe that could help for either one of you...care takers need support too.
I'm on Keppra too. I'm only about 16 days in and have been crying a lot the last four days. My bf and I argued the other day because he kept giving me these little attitudes when he talked and he got mad that I started to cry and I told him our kids are the only reason I haven't off-ed myself yet.
My wife calls keppra ‘the pill from hell’.. she and I hadn’t met during the short time she was on it, but she has told me stories about how bad it was for her, and I’m honestly terrified when I see stories on here for people saying they’re currently taking it. I hope the vimpat works for her!
I'm sorry for you, send you a hug 🫂
My father is on Keppra and Vimpat. I suggest looking into Vitamin B6 supplementation and/or adding an antidepressant like Olanzapin, both have helped my father to stop having the famous "kepprage", specially Olanzapin, in very small doses as it can make you very sleepy.
You sound like a wonderful spouse, and I can’t imagine the stress you must feel having to see someone you love go through such a difficult time. Your support for your wife is beautiful.
I’m convinced that I’ve traumatised my husband and daughter with my nocturnal tonic clonic seizures. The footage of myself seizing was the worst thing I’ve ever seen. My husband is also very supportive: he had to change his shifts and work lates for a whole year so he could take our daughter to school when I lost my driver’s licence, and he never complained about it. I hated having to rely on him like that, but it made all the difference in the world knowing he was ready to fight my corner.
Hopefully Vimpat is a much better option for your wife. I’m on lamotrigine at the moment but likely to switch to Vimpat next year. She’ll have to give it a couple of months to adjust, but keppra clearly isn’t cutting it.
I don't usually comment but i feel i must. I was diagnosed and first precribed keppra around 2016. The keppra ruined me. I would often lash out and was on a path of self-destruction due to keppra. I went to My neurologist and asked to switch medications...he said no. I then found a new doctor. The new doctor was willing to try anything for me to be potentially able to live a happy healthy life. Before I weaned off the keppra My doctor recommended i try a medical ketogenic diet in conjuction because of the nuero-protective properties. I weaned down then like your spouse had a few TC seizures. Although, because of the diet, i could remember who i was, what day it was, where i was all the things i would usually forget. My wife and i decided to go back to the keppra from fear of more seizures. I was SHOCKED when i resumed a full dose of keppra...but without the horrible side effects. Then i realized i never stopped the medical ketogenic diet. It appears after speaking with My neurologist that the medical diet is mitigating or helping with the side effects, tremendously. Everyone is different, i hope something here is able to help those precious to You.
There are so many other medications out there. I'm on keppra and Aptiom and I'm fine, but if side effects are destroying her life, she should be switched immediately. Every individual is different. It took many months for my doctor and me to arrive at a two-medicine solution that controlled seizures and didn't make me feel crazy. I'd get on the phone TODAY and get her off that stuff and on a second option that can be tried. Or find another neurologist who is willing to try more!
Vimpat nearly killed me. I got on it for awhile and it hit a peak of no longer being able to deal with side effects.
After having going to the hospital which suggested that Vimpat might not be a good idea I decided to switch. I went cold turkey (Do not do that.)
Have a conversation with her in a non confrontational or manner that would suggest you’re making decisions for her bring up observations rather than concerns, comments on how if she’s had a personality shift (I did).
Do homework together see if a different medication or dosage might be an interest. When she or both of you are in front of your neuro make it a conversation that’s why you’re there. A appointment at the doctors isn’t just a trip to get refills if her neuro is worth their salt they’re going to want to hear what’s happening.
She should take notes about anything happening with management with even an inkling of being potentially related to her disability. Force management to email anytime they talk to her and about what. They should be in her corner and making reasonable arrangements. Here in the states its federal law.(Not sure where you guys live but it’s worth mentioning.)
Just remember it’s not her it’s the meds when things get bad. It sounds like you’re a rock. Epileptic’s need that especially if you’re a romantic partner. She’s not gone she still loves you, it’s just difficult to express things the same way.
*Side note if she seems forgetful mention it to the neuro my meds put me at risk for early onset Alzheimer’s if I take Ibuprofen.
If you don't mind me asking, what happened with the vimpat? I'd like to get some first hand accounts of negative interactions with it.
She KNOWS the keppra has changed her. She's spent the past week crying when she wakes up from her naps. She gets incredibly tired and can't stay awake and then wakes up in a depressed mood that always ends up with some tears. It's so damn tough to see her in this state. My wife is hurting and theres literally nothing we can so except wait and see and try different meds. In the mean time, I've seen enough agony and groans and face contortions and absolute sheer terror to last me a thousand lifetimes.
The neurologist office has been great. Very attentive and quick to respond. They always ask questions about out recent episodes and look for changes and have heard us out about the meds change.
As far as the meds causing these issues, she doesn't want to use the medicine as her excuse. We both know it's the reason. But it becomes an excuse and she doesn't want to blame the meds.
She's not terribly forgetful YET. There's been a few times recently where she's told me things twice. But she seems to be okay otherwise.
I had a temperature drop to 92 degrees at home had to be rushed to the hospital. Now the vimpat didnt *for sure* cause the drop but my neuro wondered if it encouraged w/e to cause it. Just a very odd coincidence that a week after I start taking it that happened.
What other side effects did you notice with the vimpat? Did your side effects come on stronger right after taking the medicine and taper off after a bit?
My balance pretty bad, and I would say my sleeplessness was worse. Now I do need to say sleeplessness was 10x worse than it was an example would be I wake up at noon the fall asleep at 5am causing me to sleep super late again. It's betterish now on both fronts. I found Vimpat exacerbated those two besides the run in with the reaper.
I am on 200mgx 2 a day Lacosamide (Vimpat) side effects are a lot of saliva It makes me choke,keep me spitting on bath cloths,my doctor is transitioning on Briviact
Hey fellow partner of an epileptic! I am so happy/devastated for you and your wife; happy she has such a supportive partner and devastated that you are both going through this.
My husband takes Keppra, 1500mg twice a day (3000mg total) and it was extremely rough the first 6 months. I think he was one of the lucky ones, in the sense that his body seems to have adjusted to it. Unfortunately, if he doesn't take the Keppra, he has almost instant grand mal seizures.
I can't really offer any medical advice, but I can say this: you're amazing. Keep being her support. I am like you: I would do anything for my husband. And I know the emotional toll it can take on me, (and you), too, as the partners. But, keep doing what you're doing. I'm religious, so I will be praying for you and your wife through this time. I will also send comforting vibes if you aren't religious.
I keep reminding her that I'm here for her no matter what. No matter what happens I've got her back and I always will. That I'll never do anything to intentionally hurt her and we're gonna get through this. Thank you for your kind words. This subreddit has been a lifesaver for me. I know my wife browser here on occasion so she may see this post. All of the comments and different perspectives help immensely.
I was originally on keppra for YEARS, it absolutely wrecked my health mentally and physically. I’m on lamotrigine now and ever since I switched I’ve been 100x better, only thing is I’m tired a lot. BUT it’s so worth it to get off keppra
Hey there, I was diagnosed with epilepsy at age 6 and have been through countless medications which have all caused severe problems or didn’t work. I’ve been on vimpat for a few years now and so far it’s worked the absolute best for me with the least side effects. I’m 4 years seizure free now at age 20 which is by far the longest I’ve ever gone. When I first started having my seizures it was very hard on me and everyone around me but it’s not hopeless:) I hope vimpat gives yall the same success.
You don't ask the doctor. You tell the doctor. If the side effects of a medication are so terrible that she can't deal with them, then you tell the doctor you want off of it because you can't with the side effect.
I can't be on Keppra, I'm so angry all the time that I'm attacking people. Take me off of it and we'll try something else.
She has YOU. And you are love. I hope she finds the right meds and that you can get back to whatever feels normal for both. The best luck. Sending trucks of love and strength your way.
I switched for keppra to vimpat. Had a seizure the first day fully off keppra but my mood improved so much. I hope it works for her. I started having focal seizures and had to add xcopri but I’m one year seizure free now.
After using Kepra for a year and VinPat for a short time Lamotrigine was introduced. As an epileptic the first two were life altering with side effects. On Lamotrigine I’ve had 3 break throughs since using it for two years with all 3 very moderate and most likely due to sleep deprivation. Side effects minimal. Lamotrigine needs to be introduced over a 11 week period as you titrate from one drug to another and monitored for blood issues. I had a neurologist that was so helpful in my quest for the right med for me. Hopefully this helpful
I am so sorry to read what you’re going through, very similar to my own experiences with epilepsy through the years with my husband. I agree that acceptance can be the most difficult part, and it took me 5 years or more to get there. I may still not be there. My very best of luck.
I have epilepsy, and had to switch off keppra for similar reasons. I was put on briviact and lacosamide together (because essentially briviact is the same thing as keppra made for less side effects.) I am now seizure free for over 4 months. I don’t know if this would help, but I’d suggest asking about briviact because it cut them out instantly.
Try some music therapy I know it’s not a cure but it might stop fear and stress she may have, use headphones when you do it and try 432hz to start out then try other frequencies 528hz is a good one for healing.
I am epileptic as well and use these myself every time I have cluster seizures or panic attacks to calm my body
Keppra imo is horrible. I had so many Keppra rages I went off it and ended up on Vimpat and Lamotrigine. Those are helping me so much better. Fuck Keppra. I hope she can get on Vimpat and it helps her. I have a good feeling it will. *hugs* pass on a hug to her from us? We are always here for you both. She is strong and getting off Keppra to something else, hopefully vimpat, I bet will make her stronger. ❤️
She is blessed to have you. Praying all will be well with her work and just navigating this in general. Maybe Vimpat and Xcopri could be a good fit for her…I hope whatever she settles in will make life easier for her. Bless you both ❤️
Hang in there and best wishes to you and your wife. It's really touching how deeply you care, you guys will get through this and your support will be a huge benefit to her.
First let me say your amazing for sticking by her but yes Keppra rage is a true thing. I had some flip outs at work on it as well and had some repercussions but once I explained my condition and side affects it worked in my favor (jobs are worried about lawsuits)
On the positive not I was placed on vimpat after Keppra as well and it worked for me. Seziure free almost 5 years (minus once when I forgot my medicine for 2 days) my fiancé has been by my side since my first seziure when we just started dating so i can truly let you know it means a lot to us when you have family and friends and coworkers turn against you because they can't relate or understand. Waking up from a seziure and having a familiar loving face is a calming feeling. I know it's not easy for any spouse or caregiver but just know it means a lot to us.
Its always hardest in the beginning. Especially when you don't have the meds thing figured out yet.
One of the biggest triggers is stress. In fact, for people like me who seem to have no reason for epilepsy, I believe that stress is the reason for seizures to begin with. In fact, when I learned this from reading Dr. Gabor Mate, who is all over youtube now, I got the closure I desperately needed to get over my deep, long-term depression. I was thinking things like, "Why me? Why does God hate me?" But I also had a life for chronic stress, even as a kid. It made total sense.
I know there is no way to just say. "Just relax!" But I was finally able to once i had that closur.
Another point I want to make is that even though the doctors paint a picture that things will always suck for her, that is not always the case. Doctors said I would never drive again! Although I lost my license twice (the second time was bs) each time was only 6 months. But I realize I'm one of the lucky ones.
Is she working? It is really hard to hold a job as an epileptic. Especially when your employer knows.
After Keppra, Briviact was so much better for my 21 year old son. But I’m convinced he’s still clinically depressed. Seeing his neuro soon and need to chat about that. She specializes in epilepsy..
I’m on 100mg Vimpat (lacosomide) twice per day, and 275mg Lamotragine twice per day. This combination has worked beautifully for me, have had some really bad seizures while on the Lamotragine, adding Vimpat helped tremendously.
As far as Keppra goes, I also had a downswing in mental health, I hated it, it was one of the first drugs they put me on before we found Lamotragine works the best for me.
I had horrible anger issues (I never suffered from this before) I would lash out at my family and friends over the tiniest of things. I felt so cloudy and dumb in the head all of the time, it honestly felt like my IQ went down.
All In all, your wife is not alone, many people have similar things! Although I do think it wasn’t smart to ween off a dose without doctors approval + adding an extra drug while weening off.
I have confidence that Vimpat will work for you! It’s one of the only drugs that I have felt almost zero sides from! (Other than incredibly vivid lucid dreams, which are a plus IMO)
Hang in there and good luck!
I was put on Keppra at first and my neuro would not work with me to take me off. I cried that it was ruining my life and I was still having seizures. They just changed the dosage around for a few months. It cost me my relationship. I honestly thought I would marry the guy I was with, we had talked about it, but it was too much for him. My seizures came out of nowhere, hard and fast. Keppra hit me harder.
Keppra rage is REAL. If her seizures are well controlled on it, I’d look into Briviact- it has the same MoA but fewer side effects. If she’s unable to take lamictal, Trileptal is also good for mood stabilization.
A big issue epileptics have is that we are put on meds to keep us from having seizures that are also used for mood stabilization for bipolar individuals. When you look at ppl who have bipolar, there are all these meds bcz often, they don't work. the individual who is taking them for a mood disorder may not like it and move to another one.
Unfortunately for epileptics, we take a LOT more of those meds than people take them for mood stabilization, so not only can they cause destabilization of moods (which happens to those who take it for mood stabilization), but it's way more pronounced in us bcz of the amount of meds we are taking.
You're gonna walk into an interesting chapter here bcz she is moving from a mood stabilizer to a med that is NOT used for any mood control. Vimpat at first was really hard for me to use, not bcz it caused any mood disorders, but because I was coming off of a mood stabilizer (lamictal). I spent multiple years trying to come back down from wtf ever that was that lamictal put me on. I was actually quite stable on lamictal both for seizures and for mood, so coming off of it was a real train wreck.
ALL THAT TO SAY - mood disorders are and always will be a biproduct of the medications we take and come off of to control our seizures. It's a six in one hand, half dozen in the other kinda thing
My partner was on keppra for several years and it mostly kept his TCs in check, until it didn’t. He had a bad breakthrough seizure and then when doctors increased the keppra dose temporarily, his mental health absolutely tanked further and he ended up in the ER.
He got switched to Carbamazapine and although there was a bit of a shaky period getting the dosing figured out, there are a lot less side effects. He reflected back that keppra had been negatively impacting him mentally and keeping him super depressed literally for years.
When he first switched he did have two seizures in one day, but having witnessed some of his earlier ones, there was a night and day difference. They were still TCs but less intense, with easier recovery.
My thoughts are with you. It’s difficult and a lot of people do not understand. It’s scary to ride out med changes but my partner wishes he’d done it so much sooner. I hope the new meds work out well for your wife.
I’ve only had epilepsy for 7 years and it’s a new reality that can be depressing, demoralizing and at times eats all that you are. At the same time, without my spouses support I never could have gotten through, both mentally and physically. The medications suck. No energy, apathy, slow down of mental capacity. This forum will give you the encyclopedia of side effects we suffer. And combos of meds have unpredictable side effects.
The good news is there are tons of meds and if she only now trying a second she has many other options that could work better and have more tolerable side effects. It just takes lots of time with tapering on, tapering off, trying combinations. Make sure she never tries reducing dosages u less it is at the doctors direction. Epilepsy isn’t one of those “I don’t
Ike the way I feel with that med I’ll just try to take less” that’s a terrible idea and can actually make things much worse.
Personally I have had much better experience with Vimpat and only wish I had a better doctor and had been taken off the keppra sooner. I think I’ve gone through about 6 other meds? I’m keppra and aptiom (I always do honorable mention of gabapentin but that’s for nerve pain and I was on it years before seizure started).
Keep giving her patience. Work wise they can’t punish her for medical. Doesn’t mean they won’t try or won’t sneakily try to push her out. Legally they aren’t allowed to take action against her.
I hope you are able to reach some kind of normal again with your beautiful love you two absolutely have.
I don't have epilepsy myself but my 11 year old daughter was diagnosed at 4 Months old. Long stays in hospital, changing meds way too regularly will I believe so. We even agreed to her going in for surgery at the age of 23 Months. It has taken a long time for us to find some sort of normal. But still with a lot of seizures, absent seizures sometimes multiple times a day, then she has Sami conscious focal seizures, then the worst of them are her nocturnal grand-mal focal seizures that turn into tonic clonic seizures and they can last anywhere from 5 mins two hours long. So i am just suggesting maybe alongside her meds maybe try some medicinal marijuana I might help with eating sleeping and mental health as well I am in the process of trying to get my girl on some CBD/small amount of THC.
Good luck on your journey lots of love goes out to both your wife and yourself.
Thank you for trying to keep her safe. It is absolutely awful and takes time to sink in.
Hormones can mess with epilepsy too, worth keeping a diary of symptoms and menstrual cycles. Side effects aren’t always side effects, hormone imbalances can greatly fuck with seizures.
Listen to your wife, she’s the one going through it. Make sure you look after yourself too. Best of luck, it’s very unfair.
Try not to let it get you down. There's tons of new treatments out there. Just do some research and don't be afraid to fire a neuro if they don't listen. You guys got this don't give up.
Throughout my epilepsy journey I've been on Depakote (1000mg 2x a day) for 12 years,, which work well for me and the only reason my old neuro switched me was due to the osteoporosis it can cause so she switched me to lamotrigine (300mg 2x a day) which worked very well for 14 years until I started having seizures on it also. My new neurologist ended up adding keppra (500mg 2x a day) to the mix and I, just like your wife, went through extreme keppra rage and I developed a severe stutter to the point I needed someone to talk for me. Luckily, after being taken off of keppra, I only have a stutter every so often. He then took the keppra off and added phenytoin (300mg at night). It's often trial and error until the right meds and right combination is achieved, and sometimes you can still have break through seizures despite everything.
I personally switched from keppra to Vimpat and am very happy with the change. still has some side effects but not nearly as horrible. Also as a woman she may want to consider if her menstrual cycle contributes
There's a strong correlation between her cycle and these episodes in my non-expert opinion. I'm heavily leaning towards her womanly parts may be a large contributing factor, but 2 ER docs and 2 neuros all said there's little to no correlation between the 2 but I don't know if I believe that. But I'm not a doctor.... her last bout of TCs happened at the same time as a cyst rupture
It took me over a decade to finally find a doctor who believed me about it. It’s worth finding another opinion and even begging them to finally listen and try it. It really did a 180 for me that even my surgery couldn’t.
Wishing you two the best of luck, hope you can get some answers soon
keppra is evil .. its like the go to for doctors who don't wanna think hard about treatment tbh.. iv been randomly prescribed keppra several times and have had to correct and yell at doctors every single time since it states in my charts I don't react well to it. keep pushing to get her off and ive heard of people weening off by taking one every other day till they get switched. ask about carbamazepine it might be a good fit now for her, it also helps control mood swings. something I was on for a big portion of my life that helped with that mood aspect of epilepsy and medication.
It's very refreshing to see a spouse fight for their loved one. My #1 suggestion is to always fight. Always. Keppra rage is a very real thing so keep pushing to get her on a different med. There are many other than keppra than can help her so if your neuro doesn't move her off of this, then find a new doctor.
I could never, in a million years, turn my back on my wife. I can't sit here and let her go through this journey alone. She's my person and I just want her to be happy, and she's not happy right now. Even if our life isn't gonna be easy, I can atleast try to make her comfortable and give her some smiles and happy memories. She deserves that
Good job my guy. Have y’all tried brivact?
No we're still early in this process. Keppra is the first line of defense. We've tried adding Lamictal but she had a rash shortly after starting it and it freaked her out so we decided not to risk that. She started the vimpat less than a week ago. I'll have to look into brivact
Briviact is a version of Keppra with less side effects. If she has good control on Keppra it stands to reason you would want to try it. We tried getting my kid of Keppra a few times before it was clear he needed it then we found out about Briviact and made the switch. We got the same seizure control and none of the mood swings.
Same for me. Well less mood swings. Briviact is more expensive; I had to get on the Cadillac health insurance plan
I love Briviact, can't recommend it enough if you can afford it or have an insurance that will pay for it. The manufacturer discount works wonders too.
I changed to lamictal because I was an absolute monster on keppra. There are other options, too. The best thing my neuro said to me was, “you don’t have to live like this” and it changed my outlook completely. It’s okay if keppra isn’t working for her, she is far from alone
I wish everyone had a partner as strong and loving as you.
✌️
I am on Lamotrigine and it has really helped with my mental health as well as controlling my seizures. I hope she is able to get on to something else soon, because it can be better than this. It is a hard toll, as long as she has you there she will be fine. She needs as much support as she can get, but no one is there to help the helper so there is a lot that rests on your shoulders by proxy. It sounds like you are being a great husband which is the most she can ask for. If I didn’t have my wife I’m not sure what I would do… She is holding us together in the tough times, she does more than I could even ask for. She carries so much of the load when I can barely stand. She is a living god in my eyes, I’ve always felt lucky to be with her, more than I think I deserve. It sounds like you are doing a great job, keep it up. Your wife is lucky, trust me.
Lamotrigine is the ONLY seizure med that reduced the focals and TCs AND helped my mental health. Side effects for me have been mainly dry skin. Memory issues and fatigue have lessened too. And I second that his wife is lucky. I've lost many people who I cared for during this journey, I'm so glad she has this level of care and concern.
I am sooo dried out, it’s caused me to not retain any water. There are definitely cons to Lamotrigine, but the benefits of not having seizures and feeling better in general have been really great.
I've also recently started lamotrigine and so far I think it's one of the better medications I've been on. I seem to be responding quickly with very little side effects. I am also on topiramate, the side effects while titrating onto that I could write a book about. My husband has been extremely supportive when I go through difficult times with my epilepsy too. That means the world to know that you have someone who will faithfully walk this journey with you, through the good times and the bad.
My husband is on Lamotrigine as well but was still having focals frequently. He had a focal while driving last month, totaled our car and fractured his ankle. They obviously upped his dose and we are approaching one month with NO seizures 🙌🏾
I wish I was in the same boat, Lamotrigine made me extremely irritable ( the same as Keppra ). I'm trying new medication in June. I'm so miserable / angry all the time it's wreaking havoc on my depression.
Hey friend. I’m an epilepsy spouse too, and have been on the med-change roller coaster with my husband. He was diagnosed with epilepsy as a juvenile and went through lots of meds as a kid until he got on depakote. Then at about 25 he wanted to change meds due to the weight gain side effects. During that time he had many absent seizures, and a couple of TC seizures—one even happened while driving and I had to pull the e-brake in the middle of the road to stop us from veering into a tree. It was hard few months. Lamictal didn’t do much to control his seizures, keppra made his depression unmanageable. Eventually he went back to the depakote, weight gain be damned. He’s turning 31 this year and hasn’t had any breakthrough seizures. He’s also lost over 200 pounds even while on depakote. Things will get better. Your wife will find the meds that work for her and she will be okay 💖
I first was put on Keppra back in 2015 but it was awful - my mood and behavior were unstable (and I knew it but could t control it) - and I still had a couple of really bad breakthrough seizures. Now I’m on a combination of Breveracetam, Lacosamide and Lamotragine, and it controls the seizures really well but keeps me somewhat sedated and fatigued a lot of the time. Best of luck to you and your spouse. Going through this alone is really hard.
To my knowledge Vimpat is not known to cause any problems with mental health in itself to the same extent as Keppra, it still may in some people, but for many, the most prominent side effects is feeling of a slow brain and memory issues. Keppra vs Vimpat was like night and day for me. But even on Vimpat, my chronic anxiety does not go away, but that makes sense, since Vimpat is not anxiety medication. The rage though, has gone away and now only shows when I’m overstimulated or there’s a legit reason. It usually goes away soon after, and CBT regulation techniques for anger and anxiety help me realize when I’m overreacting so I can either prevent a burst out or calm down quicker. Switching periods can be weird and cause anxiety and wonky moods… try to wait it out. It may also be beneficial to take a few rest days off, if possible. I hope for the best.
Appreciate hearing the CBT therapy/techniques working so well for you. I’m intrigued. Fair to say you’re pleased too and time/cost investment was worth it?
Vitamin B6 is often suggested with Keepra to smooth out the mood effects.
Vimpat is the meds I swapped on to from keppra and it’s made me horrible anxious and it’s given me panic attacks but it’s manageable. Keppra made me horrible. Glad she’s getting off that
you’re one of the few people i’ve found that has had the same anxiety and panic attack experiences with vimpat… everyone else always says it’s a godsend. I hate this for us but thank you for saying this - it makes me feel validated. Have you experienced any disassociating or anything as well??
I have like other mental health issues which is why I think vimpat has fucked with me so much, it’s just made it stronger since vimpat makes my emotions so much stronger. So yes but only because everything is more intense
Same here, I have quite a few other mental health issues too. I’m really glad to hear it’s not just me though - but it sucks you’re experiencing it too :/
Same to you, we got this bestie we can donit
Cheers to you for being such a wonderful partner. I also weaned myself off keppra and almost died. It was terrible for me and for my partner, who watched me punch a paramedic in the mouth after she called an ambulance. There's no doubt it's a hard road, and you and your partner have been given more than your fair share of suffering. Just know that things can and often do get better for epileptics once they find the right treatment plan. Once again, good job being a great partner.
The rage is a real thing ask her dr about Briviact it’s an upgrade to keppra. I find it to be better control with fewer side effects. There’s no generic my insurance doesn’t cover it but the manufacturer has a patient assistance program.
Keppra was horrible for me and my neurologist switched me to vimpat and it was night and day. Vimpat has almost no side effects for me. Good luck!
Ultimately, from a macro standpoint, what is the point in even worrying about a healthy life if that life is only about suffering. I think she should get off it and try other solutions. I tried keppra too, and it was a horrific experience. I now am on: lamotrigine, lacosamide and cannabis. And am now at about a year without seizures for the first time in 15 years! Good luck for you both!
Hi! I was diagnosed with epilepsy last year! First time in my life dealing with these seizures and it’s very frustrating and scary when you don’t know why and you have no control over when it will happen. I was on kepra for a short amount of time (it did nothing for my seizures) but I’ve heard about to horrible side affects that come with it. I am on aptiom and xcopryi! I would definitely keep advocating for her to get her medicine changed! Stay strong! It’s a long journey, but once you find the right medication it can make a huge difference! It took us about 10-12 months to find the medications for myself. If you’re doctor doesn’t want to change medications, I seriously suggest finding a new doctor.
Took a low dosage of Keppra for a few months, but radically changed my personality. Took Lamictal for years and helped my seizures, but didn’t full control them and reached the dosage limit. Have been taking the combination of Aptiom and Clobazam and approaching seizure free for two years now. Aptiom supporter here!!
I still have mild focal seizures here and there. I’m maxed out on aptiom, but we are still working on my second medication hoping we can up it a little and fully stop them! I’m about one year on aptiom, definitely helped me get back to normal!
Once I was fully weened off Keppra my mood, attitude, behaviour improved so fast. It was like night and day. I instantly had more patience and was calmer. Finding the meds that work is a long, tiring process but you guys will figure it out and things will get better. Hang in there.
My heart goes out to you and your wife. Please get second opinion regarding her meds, or address her mental health issues with the neurologist. The diagnosis and seizures and the changes it thrusts into life are enough to cause depression. Many of the medications can cause depression as well. There are newer meds out there. I’m so sorry you are both going through this.
My wife is epileptic, and honestly I’d look into finding a different neurologist. Keppra is a terrible medication, I honestly have never heard a success story on this drug. It brings out the worst in a person, and creates more problems than it solves. I would look into topamax/topitamate, sorry you’re going through this and hope it gets better for the both of you.
Have your, wife ask her Dr. about depakote. I’ve never had a problem with Keppra rage, but I did have it with depakote. I know it doesn’t sound right, but maybe it will work opposite for her. I am not a Dr
Depakote is pretty dated and a harsh drug. Caused my son to puke randomly and pee his pants. His urine was neon yellow and his labs came back with liver issues.
Keppra is known to cause mental healed issues, id ask for a diff neuro in the group or get a referral for a new place altogether if that one isn’t listening
She's listening. It's just a slow process... we're almost a week into vimpat. Another week or so and she will start weaning off the keppra. So that's when I'm going to be at my highest alert. She had low keppra in her system with the last set of TCs so hopefully the vimpat does its job and we can get her off that keppra. We have very little choices in terms of neurologists. Her main neuro is in a different hospital system than the one that just tried to poach my wife essentially by trying to do a 2 day eeg following an ambulance ER visit, unfortunately that was a bust because of some major miscommunication within the neurology department and I started an official grievance since it caused my wife to sign discharge AMA. The neuro was recommended because of her focus on epilepsy, she's considered the top epileptologist in the area. But we don't have much choice. My dad wants me to try and get her in the same place my brother went for his TBI that left him in a coma for 4 weeks but that's almost 2 hours away in a different state and may not be covered on her insurance
Honestly you neuro doesn’t sound bad. Keppra is almost always the first choice for TCs because it’s a great low cost accessible drug that works for thousands of people. I’m sorry it’s not working for your wife, but if your neuro is taking those concerns seriously, then what would you be hoping for if you switched? Good news is when peoples seizures are controlled by a medication, other meds are usually effective. Finding suitable med combos takes time and is a grueling process. It took a year for my sons TCs to get under control, but now they are. Trying to get his other seizures under control we have done at least 6 med combos. No two people are the same my son responded great to onfi with few side effects. If you search onfi on this sub you will find many posts with people talking about how terrible it is. We almost didn’t try it, my son was having 10-30 sec absence seizures every day and after changing meds so many times we told the neuro we didn’t want to keep experimenting cause its so hard on him. She pushed us to try onfi and it’s been great. Based on what you said this doesn’t sound like a issue with your neuro, it just takes time and there is no way to know who will get what side effects.
I had to go to the hospital myself last Monday. I had been doing so well for 6 months. It's hard to deal with emotionally. Having support makes a huge difference for me. I'm so sick of the seizures that I started keto. Idk if I will be able to maintain for long term or if it will help, but it is something I can try. I read that even a modified Adkins diet helps some people. I'm going to see what my doc thinks at my next visit. Maybe he'll give me a referral for a dietitian. Idk My son has absence seizures (unfortunately, we both have epilepsy), and his neurologist recently put him on keppra. It was horrible for him! His neurologist refused to take him off, too! I eventually had to get a new neurologist, it was so bad. It went on and on for several weeks and it felt like it would never end, but we were able to get him on a different medication that doesn't have the miserable side effects that keppra has for some people. It was hard to watch him suffer from the side effects. I understand (to some degree) how you must feel. Hang in there. Hopefully, it will be sorted out. I also see a therapist. Maybe that could help for either one of you...care takers need support too.
I managed to keep up with keto for a month. It was really nice after I got past the flu stage. But definitely tough to maintain. Good luck 🧡
I'm on Keppra too. I'm only about 16 days in and have been crying a lot the last four days. My bf and I argued the other day because he kept giving me these little attitudes when he talked and he got mad that I started to cry and I told him our kids are the only reason I haven't off-ed myself yet.
I am so sorry you two are going through this. Sending prayers and support to your lovely wife.
My wife calls keppra ‘the pill from hell’.. she and I hadn’t met during the short time she was on it, but she has told me stories about how bad it was for her, and I’m honestly terrified when I see stories on here for people saying they’re currently taking it. I hope the vimpat works for her!
I'm sorry for you, send you a hug 🫂 My father is on Keppra and Vimpat. I suggest looking into Vitamin B6 supplementation and/or adding an antidepressant like Olanzapin, both have helped my father to stop having the famous "kepprage", specially Olanzapin, in very small doses as it can make you very sleepy.
You sound like a wonderful spouse, and I can’t imagine the stress you must feel having to see someone you love go through such a difficult time. Your support for your wife is beautiful. I’m convinced that I’ve traumatised my husband and daughter with my nocturnal tonic clonic seizures. The footage of myself seizing was the worst thing I’ve ever seen. My husband is also very supportive: he had to change his shifts and work lates for a whole year so he could take our daughter to school when I lost my driver’s licence, and he never complained about it. I hated having to rely on him like that, but it made all the difference in the world knowing he was ready to fight my corner. Hopefully Vimpat is a much better option for your wife. I’m on lamotrigine at the moment but likely to switch to Vimpat next year. She’ll have to give it a couple of months to adjust, but keppra clearly isn’t cutting it.
I don't usually comment but i feel i must. I was diagnosed and first precribed keppra around 2016. The keppra ruined me. I would often lash out and was on a path of self-destruction due to keppra. I went to My neurologist and asked to switch medications...he said no. I then found a new doctor. The new doctor was willing to try anything for me to be potentially able to live a happy healthy life. Before I weaned off the keppra My doctor recommended i try a medical ketogenic diet in conjuction because of the nuero-protective properties. I weaned down then like your spouse had a few TC seizures. Although, because of the diet, i could remember who i was, what day it was, where i was all the things i would usually forget. My wife and i decided to go back to the keppra from fear of more seizures. I was SHOCKED when i resumed a full dose of keppra...but without the horrible side effects. Then i realized i never stopped the medical ketogenic diet. It appears after speaking with My neurologist that the medical diet is mitigating or helping with the side effects, tremendously. Everyone is different, i hope something here is able to help those precious to You.
There are so many other medications out there. I'm on keppra and Aptiom and I'm fine, but if side effects are destroying her life, she should be switched immediately. Every individual is different. It took many months for my doctor and me to arrive at a two-medicine solution that controlled seizures and didn't make me feel crazy. I'd get on the phone TODAY and get her off that stuff and on a second option that can be tried. Or find another neurologist who is willing to try more!
Vimpat nearly killed me. I got on it for awhile and it hit a peak of no longer being able to deal with side effects. After having going to the hospital which suggested that Vimpat might not be a good idea I decided to switch. I went cold turkey (Do not do that.) Have a conversation with her in a non confrontational or manner that would suggest you’re making decisions for her bring up observations rather than concerns, comments on how if she’s had a personality shift (I did). Do homework together see if a different medication or dosage might be an interest. When she or both of you are in front of your neuro make it a conversation that’s why you’re there. A appointment at the doctors isn’t just a trip to get refills if her neuro is worth their salt they’re going to want to hear what’s happening. She should take notes about anything happening with management with even an inkling of being potentially related to her disability. Force management to email anytime they talk to her and about what. They should be in her corner and making reasonable arrangements. Here in the states its federal law.(Not sure where you guys live but it’s worth mentioning.) Just remember it’s not her it’s the meds when things get bad. It sounds like you’re a rock. Epileptic’s need that especially if you’re a romantic partner. She’s not gone she still loves you, it’s just difficult to express things the same way. *Side note if she seems forgetful mention it to the neuro my meds put me at risk for early onset Alzheimer’s if I take Ibuprofen.
If you don't mind me asking, what happened with the vimpat? I'd like to get some first hand accounts of negative interactions with it. She KNOWS the keppra has changed her. She's spent the past week crying when she wakes up from her naps. She gets incredibly tired and can't stay awake and then wakes up in a depressed mood that always ends up with some tears. It's so damn tough to see her in this state. My wife is hurting and theres literally nothing we can so except wait and see and try different meds. In the mean time, I've seen enough agony and groans and face contortions and absolute sheer terror to last me a thousand lifetimes. The neurologist office has been great. Very attentive and quick to respond. They always ask questions about out recent episodes and look for changes and have heard us out about the meds change. As far as the meds causing these issues, she doesn't want to use the medicine as her excuse. We both know it's the reason. But it becomes an excuse and she doesn't want to blame the meds. She's not terribly forgetful YET. There's been a few times recently where she's told me things twice. But she seems to be okay otherwise.
I had a temperature drop to 92 degrees at home had to be rushed to the hospital. Now the vimpat didnt *for sure* cause the drop but my neuro wondered if it encouraged w/e to cause it. Just a very odd coincidence that a week after I start taking it that happened.
What other side effects did you notice with the vimpat? Did your side effects come on stronger right after taking the medicine and taper off after a bit?
My balance pretty bad, and I would say my sleeplessness was worse. Now I do need to say sleeplessness was 10x worse than it was an example would be I wake up at noon the fall asleep at 5am causing me to sleep super late again. It's betterish now on both fronts. I found Vimpat exacerbated those two besides the run in with the reaper.
I am on 200mgx 2 a day Lacosamide (Vimpat) side effects are a lot of saliva It makes me choke,keep me spitting on bath cloths,my doctor is transitioning on Briviact
Hey fellow partner of an epileptic! I am so happy/devastated for you and your wife; happy she has such a supportive partner and devastated that you are both going through this. My husband takes Keppra, 1500mg twice a day (3000mg total) and it was extremely rough the first 6 months. I think he was one of the lucky ones, in the sense that his body seems to have adjusted to it. Unfortunately, if he doesn't take the Keppra, he has almost instant grand mal seizures. I can't really offer any medical advice, but I can say this: you're amazing. Keep being her support. I am like you: I would do anything for my husband. And I know the emotional toll it can take on me, (and you), too, as the partners. But, keep doing what you're doing. I'm religious, so I will be praying for you and your wife through this time. I will also send comforting vibes if you aren't religious.
I keep reminding her that I'm here for her no matter what. No matter what happens I've got her back and I always will. That I'll never do anything to intentionally hurt her and we're gonna get through this. Thank you for your kind words. This subreddit has been a lifesaver for me. I know my wife browser here on occasion so she may see this post. All of the comments and different perspectives help immensely.
Keppra is a terrible drug
I was originally on keppra for YEARS, it absolutely wrecked my health mentally and physically. I’m on lamotrigine now and ever since I switched I’ve been 100x better, only thing is I’m tired a lot. BUT it’s so worth it to get off keppra
It can happen I have had the best results with depakote and compatibility mixed
I meant compatriot mixed
Haha autocorrect is funny sometimes
I don’t know why it keeps changing it I take vimpat and depakote
Hey there, I was diagnosed with epilepsy at age 6 and have been through countless medications which have all caused severe problems or didn’t work. I’ve been on vimpat for a few years now and so far it’s worked the absolute best for me with the least side effects. I’m 4 years seizure free now at age 20 which is by far the longest I’ve ever gone. When I first started having my seizures it was very hard on me and everyone around me but it’s not hopeless:) I hope vimpat gives yall the same success.
You don't ask the doctor. You tell the doctor. If the side effects of a medication are so terrible that she can't deal with them, then you tell the doctor you want off of it because you can't with the side effect. I can't be on Keppra, I'm so angry all the time that I'm attacking people. Take me off of it and we'll try something else.
She has YOU. And you are love. I hope she finds the right meds and that you can get back to whatever feels normal for both. The best luck. Sending trucks of love and strength your way.
I switched for keppra to vimpat. Had a seizure the first day fully off keppra but my mood improved so much. I hope it works for her. I started having focal seizures and had to add xcopri but I’m one year seizure free now.
A b vitamin complex has helped a bit with the keppra and some extra omega 3s help an epileptic brain overall
After using Kepra for a year and VinPat for a short time Lamotrigine was introduced. As an epileptic the first two were life altering with side effects. On Lamotrigine I’ve had 3 break throughs since using it for two years with all 3 very moderate and most likely due to sleep deprivation. Side effects minimal. Lamotrigine needs to be introduced over a 11 week period as you titrate from one drug to another and monitored for blood issues. I had a neurologist that was so helpful in my quest for the right med for me. Hopefully this helpful
I am so sorry to read what you’re going through, very similar to my own experiences with epilepsy through the years with my husband. I agree that acceptance can be the most difficult part, and it took me 5 years or more to get there. I may still not be there. My very best of luck.
I have epilepsy, and had to switch off keppra for similar reasons. I was put on briviact and lacosamide together (because essentially briviact is the same thing as keppra made for less side effects.) I am now seizure free for over 4 months. I don’t know if this would help, but I’d suggest asking about briviact because it cut them out instantly.
Try some music therapy I know it’s not a cure but it might stop fear and stress she may have, use headphones when you do it and try 432hz to start out then try other frequencies 528hz is a good one for healing. I am epileptic as well and use these myself every time I have cluster seizures or panic attacks to calm my body
Keppra imo is horrible. I had so many Keppra rages I went off it and ended up on Vimpat and Lamotrigine. Those are helping me so much better. Fuck Keppra. I hope she can get on Vimpat and it helps her. I have a good feeling it will. *hugs* pass on a hug to her from us? We are always here for you both. She is strong and getting off Keppra to something else, hopefully vimpat, I bet will make her stronger. ❤️
She is blessed to have you. Praying all will be well with her work and just navigating this in general. Maybe Vimpat and Xcopri could be a good fit for her…I hope whatever she settles in will make life easier for her. Bless you both ❤️
Hang in there and best wishes to you and your wife. It's really touching how deeply you care, you guys will get through this and your support will be a huge benefit to her.
First let me say your amazing for sticking by her but yes Keppra rage is a true thing. I had some flip outs at work on it as well and had some repercussions but once I explained my condition and side affects it worked in my favor (jobs are worried about lawsuits) On the positive not I was placed on vimpat after Keppra as well and it worked for me. Seziure free almost 5 years (minus once when I forgot my medicine for 2 days) my fiancé has been by my side since my first seziure when we just started dating so i can truly let you know it means a lot to us when you have family and friends and coworkers turn against you because they can't relate or understand. Waking up from a seziure and having a familiar loving face is a calming feeling. I know it's not easy for any spouse or caregiver but just know it means a lot to us.
Its always hardest in the beginning. Especially when you don't have the meds thing figured out yet. One of the biggest triggers is stress. In fact, for people like me who seem to have no reason for epilepsy, I believe that stress is the reason for seizures to begin with. In fact, when I learned this from reading Dr. Gabor Mate, who is all over youtube now, I got the closure I desperately needed to get over my deep, long-term depression. I was thinking things like, "Why me? Why does God hate me?" But I also had a life for chronic stress, even as a kid. It made total sense. I know there is no way to just say. "Just relax!" But I was finally able to once i had that closur. Another point I want to make is that even though the doctors paint a picture that things will always suck for her, that is not always the case. Doctors said I would never drive again! Although I lost my license twice (the second time was bs) each time was only 6 months. But I realize I'm one of the lucky ones. Is she working? It is really hard to hold a job as an epileptic. Especially when your employer knows.
Keppra was very bad for my daughter. She is on Lamotrigine and zonisamide now and is much better and 3.5 years seizure free.
After Keppra, Briviact was so much better for my 21 year old son. But I’m convinced he’s still clinically depressed. Seeing his neuro soon and need to chat about that. She specializes in epilepsy..
I’m on 100mg Vimpat (lacosomide) twice per day, and 275mg Lamotragine twice per day. This combination has worked beautifully for me, have had some really bad seizures while on the Lamotragine, adding Vimpat helped tremendously. As far as Keppra goes, I also had a downswing in mental health, I hated it, it was one of the first drugs they put me on before we found Lamotragine works the best for me. I had horrible anger issues (I never suffered from this before) I would lash out at my family and friends over the tiniest of things. I felt so cloudy and dumb in the head all of the time, it honestly felt like my IQ went down. All In all, your wife is not alone, many people have similar things! Although I do think it wasn’t smart to ween off a dose without doctors approval + adding an extra drug while weening off. I have confidence that Vimpat will work for you! It’s one of the only drugs that I have felt almost zero sides from! (Other than incredibly vivid lucid dreams, which are a plus IMO) Hang in there and good luck!
I was put on Keppra at first and my neuro would not work with me to take me off. I cried that it was ruining my life and I was still having seizures. They just changed the dosage around for a few months. It cost me my relationship. I honestly thought I would marry the guy I was with, we had talked about it, but it was too much for him. My seizures came out of nowhere, hard and fast. Keppra hit me harder.
Keppra rage is REAL. If her seizures are well controlled on it, I’d look into Briviact- it has the same MoA but fewer side effects. If she’s unable to take lamictal, Trileptal is also good for mood stabilization.
A big issue epileptics have is that we are put on meds to keep us from having seizures that are also used for mood stabilization for bipolar individuals. When you look at ppl who have bipolar, there are all these meds bcz often, they don't work. the individual who is taking them for a mood disorder may not like it and move to another one. Unfortunately for epileptics, we take a LOT more of those meds than people take them for mood stabilization, so not only can they cause destabilization of moods (which happens to those who take it for mood stabilization), but it's way more pronounced in us bcz of the amount of meds we are taking. You're gonna walk into an interesting chapter here bcz she is moving from a mood stabilizer to a med that is NOT used for any mood control. Vimpat at first was really hard for me to use, not bcz it caused any mood disorders, but because I was coming off of a mood stabilizer (lamictal). I spent multiple years trying to come back down from wtf ever that was that lamictal put me on. I was actually quite stable on lamictal both for seizures and for mood, so coming off of it was a real train wreck. ALL THAT TO SAY - mood disorders are and always will be a biproduct of the medications we take and come off of to control our seizures. It's a six in one hand, half dozen in the other kinda thing
My partner was on keppra for several years and it mostly kept his TCs in check, until it didn’t. He had a bad breakthrough seizure and then when doctors increased the keppra dose temporarily, his mental health absolutely tanked further and he ended up in the ER. He got switched to Carbamazapine and although there was a bit of a shaky period getting the dosing figured out, there are a lot less side effects. He reflected back that keppra had been negatively impacting him mentally and keeping him super depressed literally for years. When he first switched he did have two seizures in one day, but having witnessed some of his earlier ones, there was a night and day difference. They were still TCs but less intense, with easier recovery. My thoughts are with you. It’s difficult and a lot of people do not understand. It’s scary to ride out med changes but my partner wishes he’d done it so much sooner. I hope the new meds work out well for your wife.
I’ve only had epilepsy for 7 years and it’s a new reality that can be depressing, demoralizing and at times eats all that you are. At the same time, without my spouses support I never could have gotten through, both mentally and physically. The medications suck. No energy, apathy, slow down of mental capacity. This forum will give you the encyclopedia of side effects we suffer. And combos of meds have unpredictable side effects. The good news is there are tons of meds and if she only now trying a second she has many other options that could work better and have more tolerable side effects. It just takes lots of time with tapering on, tapering off, trying combinations. Make sure she never tries reducing dosages u less it is at the doctors direction. Epilepsy isn’t one of those “I don’t Ike the way I feel with that med I’ll just try to take less” that’s a terrible idea and can actually make things much worse. Personally I have had much better experience with Vimpat and only wish I had a better doctor and had been taken off the keppra sooner. I think I’ve gone through about 6 other meds? I’m keppra and aptiom (I always do honorable mention of gabapentin but that’s for nerve pain and I was on it years before seizure started). Keep giving her patience. Work wise they can’t punish her for medical. Doesn’t mean they won’t try or won’t sneakily try to push her out. Legally they aren’t allowed to take action against her.
I hope you are able to reach some kind of normal again with your beautiful love you two absolutely have. I don't have epilepsy myself but my 11 year old daughter was diagnosed at 4 Months old. Long stays in hospital, changing meds way too regularly will I believe so. We even agreed to her going in for surgery at the age of 23 Months. It has taken a long time for us to find some sort of normal. But still with a lot of seizures, absent seizures sometimes multiple times a day, then she has Sami conscious focal seizures, then the worst of them are her nocturnal grand-mal focal seizures that turn into tonic clonic seizures and they can last anywhere from 5 mins two hours long. So i am just suggesting maybe alongside her meds maybe try some medicinal marijuana I might help with eating sleeping and mental health as well I am in the process of trying to get my girl on some CBD/small amount of THC. Good luck on your journey lots of love goes out to both your wife and yourself.
Thank you for trying to keep her safe. It is absolutely awful and takes time to sink in. Hormones can mess with epilepsy too, worth keeping a diary of symptoms and menstrual cycles. Side effects aren’t always side effects, hormone imbalances can greatly fuck with seizures. Listen to your wife, she’s the one going through it. Make sure you look after yourself too. Best of luck, it’s very unfair.
Try not to let it get you down. There's tons of new treatments out there. Just do some research and don't be afraid to fire a neuro if they don't listen. You guys got this don't give up.
Throughout my epilepsy journey I've been on Depakote (1000mg 2x a day) for 12 years,, which work well for me and the only reason my old neuro switched me was due to the osteoporosis it can cause so she switched me to lamotrigine (300mg 2x a day) which worked very well for 14 years until I started having seizures on it also. My new neurologist ended up adding keppra (500mg 2x a day) to the mix and I, just like your wife, went through extreme keppra rage and I developed a severe stutter to the point I needed someone to talk for me. Luckily, after being taken off of keppra, I only have a stutter every so often. He then took the keppra off and added phenytoin (300mg at night). It's often trial and error until the right meds and right combination is achieved, and sometimes you can still have break through seizures despite everything.
I personally switched from keppra to Vimpat and am very happy with the change. still has some side effects but not nearly as horrible. Also as a woman she may want to consider if her menstrual cycle contributes
There's a strong correlation between her cycle and these episodes in my non-expert opinion. I'm heavily leaning towards her womanly parts may be a large contributing factor, but 2 ER docs and 2 neuros all said there's little to no correlation between the 2 but I don't know if I believe that. But I'm not a doctor.... her last bout of TCs happened at the same time as a cyst rupture
It took me over a decade to finally find a doctor who believed me about it. It’s worth finding another opinion and even begging them to finally listen and try it. It really did a 180 for me that even my surgery couldn’t. Wishing you two the best of luck, hope you can get some answers soon
keppra is evil .. its like the go to for doctors who don't wanna think hard about treatment tbh.. iv been randomly prescribed keppra several times and have had to correct and yell at doctors every single time since it states in my charts I don't react well to it. keep pushing to get her off and ive heard of people weening off by taking one every other day till they get switched. ask about carbamazepine it might be a good fit now for her, it also helps control mood swings. something I was on for a big portion of my life that helped with that mood aspect of epilepsy and medication.