Epilepsy Foundation

I think I have fallen victim to Keppra Rage... I have been on it for several months now and thought that it was a great switch at first but now I am having progressivly worsening rage issues and have had a very hard time controling my temper.  It has actually gotten to the point that I don't think I have control anymore.  I called my neuro this morning and am waiting on a call back, but I am somewhat scared of myself right now.  When I have these snaps of rage and I lose control I don't want to physically lash out at my small  children or my husband so I lock myself in the bathroom, but now I am having dreams about suicide and obout other people I know dying and am just scared...

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Thanks so much for the feed back. I am with a new neurologist that I just started seeing about a month ago and he impressed me soooo much yesterday. I called his office first thing when I got to work and left a message on the nurse line and someone called me back within 30 minutes and set up a same day appointment! Last time I had a med problem it took two weeks to hear back from my original neurologist.
I was only taking 1000mg of Keppra a day but apparently that was still too much for my body, so my new neuro has now taking me down to 250mg in the morning and 250 mg in the pm and atarting Vimpat. The thought is that I will taper off of the Keppra and just be on the Vimpat and the Klonapin (which has been GREAT).
I had just hit a point where I had scared myself Sunday night because I became so enraged at dinner with my husband and kids over something so trivial and came very close to putting my hands on my 6 year old little girl... that scared the crap out of me and I knew something needed to change because that is not who I am!
Thanks so much for your info and I will keep you updated, it is nice to have someone to talk to that can relate :0)

Christy, I never thought I was doing that bad while I was on Keppra but my oldest son told me he was glad to see the new dad.  Six months and one year after my surgery I went off meds so I chose Trileptal after six months and Keppra after one year.  Four years after that I learned I had a Vitamin D problem and my last med, Dilantin, was causing it.  I asked my epi if he wanted me to go back on Keppra and he said no.  He saw I was having attitude problems while I was on it. 

 

You're not alone and I'm glad to see your neurologist is working with you.

 

Ed

I'm so sorry for your troubles.  I also experienced problems with this.  I would have dreams and nightmares with me raging at people.  I had to go on antidepressants first to help me with my issues.  For me it was not only rage issues but just a generally personality change.  I was more argumentative, more aggressive with driving etc.  I then wasn't calming down enough so I switched to the brand name of keppra as well as Keppra XR because both of those changes can help with the personality side effects my doctor told me.  I still feel a little more aggressive than I used to be, but its helped a LOT.  also I don't know if you're on any antianxiety but I'm on ephexor and really like it.

Hi Christy,

My almost 2yr old son is on Keppra, and it causes rages in HIM!! A two yr old! He gets SO angry and does not really have an outlet for his anger, so it makes him bite, pull hair, and act out. It really sux! We are now in the process of weaning him off of it, and i gotta say that the lower his dose gets, the better his mood gets... its nice to start seeing some of his old personality creep back in! We tried weaning him once before with REALLY bad results, ie: increased seizures, New seizures... But i think thats bcuz the epi had us lowering the dose too much at a time. This time we are going Very slow, but it is worth it just to get him off this HORRIBLE drug!!! I hate it. But this is only MY opinion. And it causes sleep problems as well. It sounds like your side effects are pretty scary too. If it was ME, i would ask my neuro to change drugs or at least lower your dose...

Oh, and my son has to take Clonazepam(Klonopin) with it.

Best of Luck to you!!!

~Kelly,mom2Wesley

Kelly, I imagine what I am feeling going on in a two year old and I really feel for you and for him. It must be hard for all involved but I am really glad you are on here to give and recieve feedback. I feel sooooo much better right now being on day 3 of coming down off of the keppra and onto Vempat. I also take klonapine so that helps me to not have breakthrough seizures (hopefully)! I also have had to start taking effexor for aniety but that may change when I come off of the keppra, who knows. I just know that I am very glad to be coming off of the keppra!!!
Yeah, the dreams got SO realistic that my husband was so concerned for me waking up so scared and all. I am definately glad to be ditching the keppra!!! Thanks for the support!
Christy,
I am SO glad that your doing better coming off the keppra. We are on week 9 of his weaning, but we have to go VERY slow for him.. we decrease it like this: 10mg off his morning dose, then after a week, we decrease the 10mg off his evening dose. So he was taking 200mg twice a day. Its a long road, but TOTALLY worth it!
I have also noticed that my son has been dreaming alot lately...hmm. I didnt really connect it w/the Keppra weaning, but now that i think about it, that makes sense. Sometimes they arent that bad, but at other times, he has a pretty bad nightmare..wakes up breathing fast and is disoriented and scared. All he wants is to cling to me and he will NOT let go. Makes me feel SO bad for him. I hope that the dreams will go away.
And to LINDA and CHRISTY,
How long did the dreams last? Were they very bad?
Back to Christy..lol
I am glad that the vimpat works for you! What is the ephexor like?
And LINDA,
I didnt know that depakote had mood stabalizing effects... how small a dose can you take and still get the effects for mood? Just curious. I was thinking about asking my son's Epi, for something to help his mood swings, if they are still like this even after we are off the keppra.. plus even with him taking the clonazepam and us lowering him off the keppra, he also takes Zonisamide, and he STILL has anywhere from 5 to 20 sz's a day. its usually about 11 a day. They are Atonics mostly, but some Myoclonics..
Also, i enjoyed chatting w/u Linda the other night, when Allison,Brittany, and Melissa were on there.
I am going to send yall a friend invite, you dont have to accept if you dont want to, no pressure.. (:P)
Good Luck!! (Linda AND Christy!)lol
~Kelly,mom2Wesley

Wow, that really is a long road to get your son off the Keppra but will be worth it if it is better for him.  when I started having the weaning dreams, it was people that were the closest to me that I would see dying or being killed in like a car wreck or some other uncontrolable situation... and the scariest one was where I was hiding somewhere from my husband and kids and what scared me awake was when I realized that I was trying to kill myself but cutting.  Crazy stuff!  I go back to my new Epi tomorrow for my one week follow up and am excited to tell hime how much better I feel.  Hope you son has some great success with his med changes.  Keep us updated!

Kelly Rummel said:

Christy,
I am SO glad that your doing better coming off the keppra. We are on week 9 of his weaning, but we have to go VERY slow for him.. we decrease it like this: 10mg off his morning dose, then after a week, we decrease the 10mg off his evening dose. So he was taking 200mg twice a day. Its a long road, but TOTALLY worth it!
I have also noticed that my son has been dreaming alot lately...hmm. I didnt really connect it w/the Keppra weaning, but now that i think about it, that makes sense. Sometimes they arent that bad, but at other times, he has a pretty bad nightmare..wakes up breathing fast and is disoriented and scared. All he wants is to cling to me and he will NOT let go. Makes me feel SO bad for him. I hope that the dreams will go away.
And to LINDA and CHRISTY,
How long did the dreams last? Were they very bad?
Back to Christy..lol
I am glad that the vimpat works for you! What is the ephexor like?
And LINDA,
I didnt know that depakote had mood stabalizing effects... how small a dose can you take and still get the effects for mood? Just curious. I was thinking about asking my son's Epi, for something to help his mood swings, if they are still like this even after we are off the keppra.. plus even with him taking the clonazepam and us lowering him off the keppra, he also takes Zonisamide, and he STILL has anywhere from 5 to 20 sz's a day. its usually about 11 a day. They are Atonics mostly, but some Myoclonics..
Also, i enjoyed chatting w/u Linda the other night, when Allison,Brittany, and Melissa were on there.
I am going to send yall a friend invite, you dont have to accept if you dont want to, no pressure.. (:P)
Good Luck!! (Linda AND Christy!)lol
~Kelly,mom2Wesley

I know exactly what you mean by not feeling comfortable sharing your thoughts with other people.  That is the main reason I started up on this site.  I am sooooo happy that I can come in here and vent about whatever is really bothering me (rage, suicidal thoughts, depression, joy with a new medication) and know that there are MANY people that know exactly how I feel because they have dealt with it too!  It helps a ton to vent here so feel free to share your pain because no one here will judge you, we have probably felt the same way at some point, lol. 

 

I would definately talk to your Epi about your rage because I thought I could control mine until it built up so bad that I almost snapped on my 6 year old daughter and that made me realize that something needed to change and change quick!  Just open that door for communication and keep us posted on how you are feeling.  Hope you have a great week, keep  in tough!

carli ratliff said:

I'm constantly raged. It's amazing whenever I'm happy, and it don't last long. Topomax put many crazy thoughts in my head, which I'm off of now. But I am still constantly in anger rage. I have very bad anxiety 24/7. I've been thinking that it's just the fact I"m on 3 medications and still don't have control of my seizures that's been putting me in these moods. I've heard a lot of people talking about keppra rage lately. Do you really think it's the keppra? Maybe keppra isn't the thing for me either. I hate I don't feel comfortable telling anyone what's going through my head. It's like I know I'm not right in the head but I can't control it.

I was briefly on Keppra about two years ago as an add-on to my other medications.  It was terrible.  I had serious problems with Keppra Rage.  I was angry all the time for no particular reason.  I'd wake up in the morning and I'd already be furious about some minor thing that happened to be on my mind.

 

After completely flipping out on my wife and kids several times a day for a few weeks, my wife insisted that I stop taking it or she was going to leave with the kids.  So, I stopped taking it and things went back to normal.

Man!! That sounds SO scary! It kills me that i cant know what my son is having nightmares about...but hopefully they will go away soon. And that he will start to sleep better, when his Keppra dose is low enough. That drug really does mess with your sleep!! And the anger issues! UHG!!!! But, yeah, it is a LONG and SLOW process for him, but if we try to go down any more than that, things get bad for him. And I want to make it as painless as possible for him. I dont care HOW long it takes. But i do get impatient for him to just BE OFF IT! But we'll get there.

I am SOOOO glad that you are feeling so much better after such a short time!! Thats GREAT!!!

Hope your Epi appt.goes well, my son has one on Jan.20th.

Good Luck Christy!!!

And thanks for the info about your dreams...I just worry about what my son is dreaming about.

Your Friend,

~Kelly,mom2Wesley

Christy H said:

Wow, that really is a long road to get your son off the Keppra but will be worth it if it is better for him.  when I started having the weaning dreams, it was people that were the closest to me that I would see dying or being killed in like a car wreck or some other uncontrolable situation... and the scariest one was where I was hiding somewhere from my husband and kids and what scared me awake was when I realized that I was trying to kill myself but cutting.  Crazy stuff!  I go back to my new Epi tomorrow for my one week follow up and am excited to tell hime how much better I feel.  Hope you son has some great success with his med changes.  Keep us updated!

Kelly Rummel said:

Christy,
I am SO glad that your doing better coming off the keppra. We are on week 9 of his weaning, but we have to go VERY slow for him.. we decrease it like this: 10mg off his morning dose, then after a week, we decrease the 10mg off his evening dose. So he was taking 200mg twice a day. Its a long road, but TOTALLY worth it!
I have also noticed that my son has been dreaming alot lately...hmm. I didnt really connect it w/the Keppra weaning, but now that i think about it, that makes sense. Sometimes they arent that bad, but at other times, he has a pretty bad nightmare..wakes up breathing fast and is disoriented and scared. All he wants is to cling to me and he will NOT let go. Makes me feel SO bad for him. I hope that the dreams will go away.
And to LINDA and CHRISTY,
How long did the dreams last? Were they very bad?
Back to Christy..lol
I am glad that the vimpat works for you! What is the ephexor like?
And LINDA,
I didnt know that depakote had mood stabalizing effects... how small a dose can you take and still get the effects for mood? Just curious. I was thinking about asking my son's Epi, for something to help his mood swings, if they are still like this even after we are off the keppra.. plus even with him taking the clonazepam and us lowering him off the keppra, he also takes Zonisamide, and he STILL has anywhere from 5 to 20 sz's a day. its usually about 11 a day. They are Atonics mostly, but some Myoclonics..
Also, i enjoyed chatting w/u Linda the other night, when Allison,Brittany, and Melissa were on there.
I am going to send yall a friend invite, you dont have to accept if you dont want to, no pressure.. (:P)
Good Luck!! (Linda AND Christy!)lol
~Kelly,mom2Wesley

Linda,

Thanks for the input about the dreams. Hopefully you are right, and as soon as he gets to a low enough dose they will stop. I just HATE it for him. He wakes up SO scared sometimes, and all i can do is hold him tight, and whisper soothing things to him to calm him. And about the Klonopin, Wesley takes Clonazepam, (the generic) 3xdaily. We have upped his dose since we started weaning him off the Keppra, he used to only take it 2x a day. And it helps. But he still has problems. Once we get him completely OFF the Keppra, his dose of Clonazepam will most likely be raised a little more. He takes 0.18mg in the morning and afternoon, and then he takes .25mg at night. And he will probably take .25mg at all 3 doses once he is off Keppra. It seems to help with the sz increase when he has a dose decrease.

I wonder why your depakote stopped working after it had worked for you for so long..hmm. Thats weird. So is your new med combo working better for you?

I cant wait till my son is off this darn Keppra, and one he is off that I want him off the Zonisamide. It is notorious for causing speech problems, and my son is fixing to turn 2 and he does not speak at ALL. I really believe it is from the Zonisamide. That is the generic of Zonegran. What makes me angry is that he was prescribed the Keppra and Zonisamide when they thought he had Complex Partial sz's, and he doesnt have that kind. The only med that was prescribed after we got an accurate dx was the Clonazepam. So i am thinking, why isnt he on meds that are FOR his specific sz types? That is a question i intend to ask his Epi, when he sees him on Jan.20th. Anyways, i know this is long.lol.

Thank you for your support Linda, and I hope to chat again w/you soon.

Best Wishes,

~Kelly,mom2Wesley

Linda M said:

Dear Kelly,

My dreams and nightmares were happening when I had the high doses of Keppra.  As soon as I lowered the dose they left.  But then again, I wasn't doing a slow wean like Wesley has been, so maybe that is why you are seeing more of that.  Hopefully as he continues to titrate down it will level out.

The doctor didn't want me to go down as quickly as I did - 500 mg at once - but since I could only buy 500 mg tablets and you are told not to crush them, then we tried, and thankfully it worked.

Re the Depakote - yes it does have a mood-stabiliser function in it.  I used to be only on it for 18 years, and then for some unknown reason it stopped working - and we added more until I was almost at a toxic level - and the seizures weren't stopping so that's when I started Keppra.

then I went off the Depakote slowly and it was only after I was off all of it - and had given my last half bottle back to the doctor that the Kepprage started.  For 18 years I was at a therapeutic dosage for me of 500mg two times a day.  Now I take 500 mg at bedtime (and I also take my larger dose of Keppra in the evening.)  I take 1000 mg Keppra at nite and 500 mg in the morn.  I also take Klonopin at night which is supposed to be an anxiety reducer.  Ask your doctor about it.

Blessings to all,

Linda


Kelly Rummel said:

Christy,
I am SO glad that your doing better coming off the keppra. We are on week 9 of his weaning, but we have to go VERY slow for him.. we decrease it like this: 10mg off his morning dose, then after a week, we decrease the 10mg off his evening dose. So he was taking 200mg twice a day. Its a long road, but TOTALLY worth it!
I have also noticed that my son has been dreaming alot lately...hmm. I didnt really connect it w/the Keppra weaning, but now that i think about it, that makes sense. Sometimes they arent that bad, but at other times, he has a pretty bad nightmare..wakes up breathing fast and is disoriented and scared. All he wants is to cling to me and he will NOT let go. Makes me feel SO bad for him. I hope that the dreams will go away.
And to LINDA and CHRISTY,
How long did the dreams last? Were they very bad?
Back to Christy..lol
I am glad that the vimpat works for you! What is the ephexor like?
And LINDA,
I didnt know that depakote had mood stabalizing effects... how small a dose can you take and still get the effects for mood? Just curious. I was thinking about asking my son's Epi, for something to help his mood swings, if they are still like this even after we are off the keppra.. plus even with him taking the clonazepam and us lowering him off the keppra, he also takes Zonisamide, and he STILL has anywhere from 5 to 20 sz's a day. its usually about 11 a day. They are Atonics mostly, but some Myoclonics..
Also, i enjoyed chatting w/u Linda the other night, when Allison,Brittany, and Melissa were on there.
I am going to send yall a friend invite, you dont have to accept if you dont want to, no pressure.. (:P)
Good Luck!! (Linda AND Christy!)lol
~Kelly,mom2Wesley

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