Getting off Keppra... How long until I'm feeling like myself again?

[bridge]

Hey all. Well I was put on Keppra, Generic form, in late November. I have not been myself since. I told my doc this and he told me to try to wait it out. I did, I was feeling okay, I guess, but still feeling down, not myself. I was becoming very short with people, everything was bothering my now, and I mean everything! I have become isolated, not wanting to be around anyone and just seriously hating life. I have a great life, one I should be so proud and thankful for but for some reason all I have been feeling are negative bad feelings, resentment towards everything and everyone, taking it all deeply to the heart to the point of where I seriously have been having thoughts of not wanting to live anymore. This last Sunday, I was at a family party and flipped out on my mom. She was just joking with me, which we all in my family will do. I have a large family, brothers and sisters, plus their new kids and all that, Normally I love it! Anyway, I flipped out on my mom, my husband saw it and was suprised. This entire week I have been down, I haven't been able to work, I ended up leaving work the other day and decided to write my feelings down, which can sometimes help, just get it off my chest. Anyways, I hadn't thrown it away yet and my husband saw it and read it. Broke his heart and I had a breakdown and went in to see my dr. He finally saw me and what was going on, I could not stop crying. He finally told me to stop taking the Keppra(generic vers), He started me on Dilantin about a month ago so he said I should be okay to just stop the Keppra.


What I was wondering is, how long will these feelings stay? Will they go away pretty soon, will I notice a change in the way I am feeling? I am not expecting right away results but I today again was unable to work, I couldn't stop crying this morning. This uncontrollable crying is terrible. Has anyone ever felt this way and gotten off? IF so, how long until you felt better? Or can this be long term for me now? Am I all of the sudden become a depressed person? I am usually a happy go lucky girl who finds good in everything. I just want to be ME again.. I am praying it is the meds that hame made me this horrible person who I have become. If not, I don't know what to do..

 

[Zolt]

Hi Bridge,

What you are talking about is Keppra rage syndrome, some get it and some don't. I like you also got it. And before i did research on Keppra i had no idea why it was happening. Also like you i got upset at my Mom, which i never do. It was one of those moments when after it happened i felt awful about it and for a long time after. I went off of Keppra and onto Dilanton and that did not agree with me either. And the crying thing, oh my, i'm a man and some things made me cry that normally would not. It was horrible, just the mention of my dad and the thoughts of him would set me off crying. My dad died in 2002. I'm on Gabapentin right now and it seems to have no side effects that i can tell of.

One thing don't just stop taking Keppra, do a gradual decrease over a few weeks.

After i was off Keppra, the erratic emotions stopped happening. Can't give you a time period, since i did not notice when exactly it stopped, other then after i came off Keppra.

The medicine one tries is a crapshoot, it works for some and not for others. But if it doesn't feel right for you, then complain. Once i had to order my doc to change my meds, in a calm manner of course.

Zolt

 

[bridge]

Thanks for responding Zolt. I did end up doing some research on the Keppra, and did see this as warning signs. I almost want to switch my Dr because I called him after like 2 weeks of starting this and noticed my sadness, my loss for satisfaction in life. He asked me to wait it out. I seriously have tried, I am not myself anymore. My inlaws noticed and have asked my husband on a few occasions if I am ok. Saying how quiet and distant I was, seeming almost like I wasn't even present. That sucks hearing since I have been trying so hard to be myself, even forcing laughter almost out of me. Man that is exhausting trying to feel and act normal with these thoughts in my mind.

I went to my Dr, I am also on Dilantin, I was on that before switching to Keppra, but since I wanted off This Keppra, he put me back on Dilantin over a month ago, he gave the okay to stop the Keppra all together. I even asked, don't I need to slowly over a little time, he said no since I am fully on Dilantin now. I just want this sad empty feeling to go away!!! Oh ya, and how did the Dilantin not work for you? Was it not controlling your seizures or did it have a negative effect on you?? Thanks again and Best of luck to you with everything!!!

 

[Zolt]

Sometimes all we have is our gut feelings to go on, which normally most of the time is right. Sometimes it's hard to prove gut feelings to doctors, but you need to do what you think is right for your health. It would be nice if this was a more exact science, but until then, we have to deal with this trial and error with drugs.

I do not recommend stopping any drug suddenly, that's a big no no in my book, but then again you say you were only on it for like 2 weeks, so then it's not such a big deal.

For me dilantin, like keppra did not control my seizures, but the real issue with dilantin was that i never was able to reach the therapeutic level, even after increasing the dosage.

Regards,
Zolt

ps, welcome to CWE I am relatively new here as well.

 

[petero]

... What I was wondering is, how long will these feelings stay? Will they go away pretty soon, will I notice a change in the way I am feeling? I am not expecting right away results but I today again was unable to work, I couldn't stop crying this morning. This uncontrollable crying is terrible. Has anyone ever felt this way and gotten off? IF so, how long until you felt better? Or can this be long term for me now? Am I all of the sudden become a depressed person? I am usually a happy go lucky girl who finds good in everything. I just want to be ME again.. I am praying it is the meds that hame made me this horrible person who I have become. If not, I don't know what to do..

I started off on Dilantin/phenytoin, and then got boosted up to Keppra/levitiracetam a couple years+months ago. I have still been trying to figure out in my head what the hell happened to me a couple years ago when, as I've been able to surmise and guess, was what I've read is the infamous "Kepprage" mental mush, after a period of massive sleep seizures. I woke up one morning with the worst migraine I've ever had, back muscles entirely cramped, pain... got taken into the ER and it's all still just nightmarish mental mush. I was taken off the levitiracetam right away after this.

I still haven't felt the same since. As of a month ago I have been taking LamictalXR, and I had another seizure a couple weeks ago, but I'm still titrating UP with the meds.

I've been on phenytoin since being diagnosed about four years ago, but I recall at some point being advised it would be best to stop phenytoin for a long term medication, although it is considered stable and a good anti-seizure med.

But I just still haven't felt the same since that one time. It has sustained as the most nightmarish experience I've ever imagined possible, and I'm really not sure what to do anymore either.
It still feels like something flipped a switch of some sort, and I think I was absorbing info while I was there, but that it has sunk into my super-ego consciousness somehow such that I end up "knowing" certain things, but I don't know how, why, how I obtained certain info, where the info came from... but I associate certain things and events like this with that time span.
It feels like I may had been hypnotized somehow, and that I never> got> out> of> the> hypnosis>, and that I am still mentally susceptible somehow, still mentally vulnerable to random phenomenon.
And the weird thing is certain things seem 'verifiable' somehow, events from daily life... but there's just no sort of logic process to make these things 'certain' and 'verifiable' - so I guess they're NOT verifiable, but it's just that there is a certain resonance to some events from daily life since then.
What I've processed mentally to a point I'm able to guess, what I may be experiencing is actual contact with people I saw during that time span, so there's a faint 'resonance' as I said, but there's just no *AHA!* that the mind goes through normally to certify reality.

I've still felt surreal and dazed since that two years ago... I don't know what to do about it either.

 

[bridge]

OMG so like you feel kind of like dream state? I have dreams, I actually don't even know anymore half the time if its real life or a dream I may have had... And I don't think I have bad seizures. I think I have only had a few in my sleep, but I honestly have no clue. Now that I am aware of how I feel after knowing I have had one, I wonder if I may have had many more prior. I too though wonder whats real and whats not. I don't do anything out of the ordinary, and have only been on medication again since September 2012, but have felt odd since, and was feeling hopeless on Keppra, I am now off it, since this past Wednesday, its Sunday now, And Im not feeling awesome, but I am not crying uncontrollably anymore. WHew!!! But still off.... Ijust don't know how I am supposed to feel since I feel like its been so long now since I have been my total complete myself... ,