Coming off Keppra

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My 15-year old daughter has been experiencing awful anxiety, depression and anger issues that we think may be (at least partly) related to the Keppra she's been on since September after she had 3 seizures in one afternoon. She was having intermittent issues with this in the fall, but for the past 6 weeks it has just been unrelenting, and really begun to affect her life.

At her last neurologist appointment, we decided to take her off the Keppra. We are actually not putting her on another medication right now because the neurologist thinks that they were too hasty in putting her on meds in the first place since 3 seizures within 24 hours is really considered only 1 seizure - so she may not have epilepsy at all (but that's a whole different post)!

The withdrawl schedule he gave us was pretty quick (just 1 week), and she takes her last dose of Keppra tomorrow. For those of you who came of Keppra due to mood issues, how long after coming off the drug did you start to see some of those symptoms abate? And did you experience any other issues coming off Keppra? I haven't seen even a hint of a seizure, but she has been dizzy and tired, and her anxiety doesn't seem much better yet.

Thank you!
 
That certainly sounds like Keppra :(

The main advice here is to wean off as slowly as possible. I understand you want to get her off it asap, but the 'shock to the system' fast withdrawal causes could very well *cause* more seizures.

Neuros almost never give this advice, most don't seem to understand just how much these meds affect us.

Try and halve the tabs at least, for me I'd say much longer than a week- but I seem to have particular problems when transitioning between meds.
 
I am withdrawing from keppra too. I am down to 250mgs now and will be done Monday. My neuro took me down 250mgs per week. I was only on 1000mgs though. I had a lot of anger and irritability while I was on it. We have upped my trileptal by 300mgs while I'm coming off it. Decreasing to fast can cause all kinds of side effects and even seizures.
Hope all gos well. :)
 
As Slim and Penny mention, withdrawing should be done slow and likely as suggested by the doctor. Looking at it from another angle, I had taken myself off Keppra without a problem from 1000 mg to 0. That is not the smart way to go, but it goes to show that everyone will handle the drug differently.

The effects sound like a terrible mixture of Keppra and being 15. :roflmao:

Best of luck to your daughter. If things don't go well off Keppra, there are lots of other options out there.
 
Thanks! I followed the neurologist's orders to the letter - it seems that the protocol at CHOP is to come off Keppra fairly quickly, since I spoke with 2 different neurologists and they both said the same thing: to take a half dose morning and evening for 3 days, and then just a half dose in the morning for three days, and then she is done. She was on just 1500 mg per day - perhaps that is why? Anyway, I had no reason to question them, and that ship has sailed already!

The hope is that she was misdiagnosed with epilepsy in the first place, and we won't see any more seizures at all. There are lots of good indications that this is more likely than not (clean MRI, no further seizures, no need to up her meds, etc.).

Does anyone have any experience with how quickly the mood symptoms start to resolve? I'm not expecting to see much until she is done with the drug and her body has a chance to re-adjust to life without Keppra, but I'm curious how long that usually takes. I would so love to have my happy girl back :(
 
just out of curiosity, if you don't mind me asking, what do they think she has instead of misdiagnosed epilepsy? I'm only asking because I am trying to find a diagnosis. but I don't understand how she can have 3 "seizures" in one day yet, they actually aren't epileptic? obviously I hope that it's not epilepsy and rather, an easier resolution. as for the meds , I wish I could be of help, but I have never been on any medication except for paroxetine which I took for depression, an stopped over a yr ago. but that was a mild medication and I was quite moody and nauseated coming off it.


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Well, Lafontaine, anyone can have a seizure at any time. Approximately 5-10% of the population has one unprovoked seizure. It can be due to stress (it was the day before her first day at a new school), or just a fluke. After one seizure, the chance of having a second one - ever - is 50%, although most of the time that second seizure happens within the first 6-8 months of the first one. The general guidelines for treatment are to wait for a second seizure to initiate treatment, unless other issues are revealed by EEG or MRI. If you have that second seizure, you are considered to have epilepsy (i.e. a "tendency to have seizures") because the chance of recurrence jumps up to 80%, and treatment is necessary.

Because her EEG & MRI were clean, and because she has not had any further seizure activity with no increase in her medication, her doctors think that her chance of a second seizure is considerably smaller than 50%. However, she absolutely has a higher chance than the general population. If she has another seizure, of any type, the epilepsy diagnosis will be confirmed and she will go back on meds (but NOT Keppra). She is turning 16 in a couple of weeks, but will not be allowed to get her learner's permit until she is 6 months after withdrawing the medication, and has had no further seizure activity.

Honestly, what annoys me is that this is what they should have done in the first place. I was actually the one who brought up with her doctor (back in September!) that 3 seizures within 24 hours is considered one seizure. He gave me a response, but in hindsight it was not really convincing; of course at the time I was so traumatized that I couldn't even think clearly. It has been niggling at me ever since then: what if we are medicating her unnecessarily? And then when her anxiety issues got so bad - and this horrible, explosive anger started to come at me (screaming in frustration, kicking me, hitting me with a pillow - not typical for her at all), I really started to blame the medication. So while I'm happy that we are giving this a try now, I just feel like her year would have been so different if we had waited for that second seizure in the first place.

Please wish us luck that she continue to be seizure free without meds, and that her mood issues start to moderate! It has been very, very difficult.
 
hmm interesting! thanks for the insight. yes, I definitely wish you both lots of luck for a safe, healthy and happy future :)


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Just a quick update!

My daughter took her last dose of Keppra 3 weeks ago. Since then we have not seen even the hint of a seizure (even with the quick titration down her doctor recommended), which is wonderful news and a good indication that we made the right decision.

Even better, most of the major issues she was having with anxiety attacks, depression and panic attacks have disappeared. This does not mean she does not feel anxious or sad sometimes (probably more frequently than most); but the extreme reactions she was having, and the almost constant anxiety that was getting in the way of school and other activities have just begun to ebb away. Since it took about 4 months for these side effects to manifest themselves, I expect that it will be a few more weeks before her system fully recalibrates, and we can really see her fully returned to herself.

If you think you are seeing drug side effects, trust yourself! I kept wondering if I was fooling myself and in denial about her "issues" - she is definitely an anxious and perfectionistic person, but I honestly think that the Keppra was literally making her crazy and unable to deal with even mild stress. I am now kicking myself for not insisting she come off the drug sooner. Hopefully she continues to be seizure-free and continues to improve psychologically.

Thank you for all your support over the past 6 months. I will continue to think of each one of you, and pray that you find seizure freedom!
 
Sounds good. Dont regret making the decisions when you did. You did everything in an educated fasion and aproached delecately.

No regrets. ;)
 
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