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Leviracetam withdrawl side effects: Are these common?

Posted by mousumi2023 @mousumi2023, Apr 5, 2023

My 9 year old son is on leviracetam since 2 years and has been sezuire free for this 2 years . currently he is weaning off from keppra completely but I see a lot of sideeffects like weakness,shaking,twitching feeling weird and unwell,mood swings,anxiety and streching . Are these the withdrawl sideeffects and will these side effects go away once the medication is stopped?

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heal33 | @heal33 | Apr 6, 2023
In reply to @jakedduck1 "@heal33 Since Brivaracetam is similar to Keppra why don't you want to try it? I assume..." + (show)
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@heal33
Since Brivaracetam is similar to Keppra why don't you want to try it?
I assume your seizures aren't controlled.
Jake

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Because Brivaracetam is a controlled substance and I want to avoid those after getting off of clonazepam. Also, the side effects sound kind of scary after reading them on the website for the drug.

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baa | @baa | Apr 7, 2023

Good morning to you Jake, and all of you. I learn so much by reading your posts since I am fairly new to seizures. Thank you sincerely for sharing your journey.

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Mentor
Chris Gautier, Volunteer Mentor | @santosha | Apr 9, 2023

Dear All,
Hope you have been having a peaceful and blessed Eastern!
@heal33, did you tolerate well all the AEDs you have tried before Lamotrigine? Why am I asking that? Because I and many other people have difficulty tolerating those medications, having I tried Lamotrigine, Tegretol, Trileptal, Gabaneurin and last Vimpat. Some of them did in fact eliminate my seizures, but the side-effects I had were terrible. Others medications increased my seizures. Nowadays, I am taking CBD (medical cannabis) and can tolerate it well. I still have 2 to 3 seizures (focal complex) seizures a month, but I do prefer to have those seizures rather than to be seizure-free and have all the side-effects I have experienced with AEDs. It is a trade-off! If you are a person that adapts well to AED medications (I am not, I am very sensible since childhood), I would try to be seizure-free with another medication. But if you have some sensibility to AEDs, think carefully before changing medication.
I understand that all AEDs are controlled medication, at least here in Brazil. Controlled means you have to show a prescription that is retained by the pharmacy. Are some AEDs not controlled in the US? What do you mean by controlled medication @heal33 ? Perhaps my understanding is a bit different.
Santosha

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heal33 | @heal33 | Apr 9, 2023
In reply to @santosha "Dear All, Hope you have been having a peaceful and blessed Eastern! @heal33, did you tolerate..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Dear All,
Hope you have been having a peaceful and blessed Eastern!
@heal33, did you tolerate well all the AEDs you have tried before Lamotrigine? Why am I asking that? Because I and many other people have difficulty tolerating those medications, having I tried Lamotrigine, Tegretol, Trileptal, Gabaneurin and last Vimpat. Some of them did in fact eliminate my seizures, but the side-effects I had were terrible. Others medications increased my seizures. Nowadays, I am taking CBD (medical cannabis) and can tolerate it well. I still have 2 to 3 seizures (focal complex) seizures a month, but I do prefer to have those seizures rather than to be seizure-free and have all the side-effects I have experienced with AEDs. It is a trade-off! If you are a person that adapts well to AED medications (I am not, I am very sensible since childhood), I would try to be seizure-free with another medication. But if you have some sensibility to AEDs, think carefully before changing medication.
I understand that all AEDs are controlled medication, at least here in Brazil. Controlled means you have to show a prescription that is retained by the pharmacy. Are some AEDs not controlled in the US? What do you mean by controlled medication @heal33 ? Perhaps my understanding is a bit different.
Santosha

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We have to show a prescription here too, I was talking about the ones that are addictive such as the one I was taking which I took with lamotrigine. I was taking clonazapam. I don't think I was on too high a dose. I used to take it before bedtime. It took me about three and a half months to eliminate the drug as the doctor wanted to do it slowly.

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Mentor
Chris Gautier, Volunteer Mentor | @santosha | Apr 9, 2023
In reply to @heal33 "We have to show a prescription here too, I was talking about the ones that are..." + (show)
Profile picture for heal33 @heal33

We have to show a prescription here too, I was talking about the ones that are addictive such as the one I was taking which I took with lamotrigine. I was taking clonazapam. I don't think I was on too high a dose. I used to take it before bedtime. It took me about three and a half months to eliminate the drug as the doctor wanted to do it slowly.

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Thank you @heal33 for your clarification!

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