Clobazam as an add-on medication

Hi, I have just been prescribed clobazam as an add-on drug, to take whenever I feel I am at high risk of having a seizure eg. not had much sleep (my main trigger), or if I have sickness or diarrhea that may have caused my normal medication (epilim chrono) to pass out of my system without being absorbed. Sounds like a great idea as it is very fast acting (20 mins), but it also sounds like it can be a bit nasty. taking it regularly can lead to tolerance and even dependance.

Do any of you have experience of taking this medication? Let me know how oyu have found it.

14 Replies

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  • Hi have no idea what side effects are caused by the above meds... Have never taken it. I am currently on Carbamazapine and Phenytoin which works well together!

  • I have clobazam for the same reason. I have cluster seizures so if i have one i'm likely to have several the same day or over a few days. I take clobazam after first one or like you if i'm in a situation where I may have a seizure (tired, chest infection etc). It works!!! But it does make me quite tired for the time I am taking it. Better than seizures though and if you take it before bed not so bad. In terms of dependancy I've been told to only take it maximum 1 week at a time and I only ever use it about 3 times a year so not a problem I dont think. Good luck I hope it works for you :-)

  • Hiya i have tried clobazam but found i couldnt tollerate the side effects along with keppra and lamotrogine which i was severly allergic to epilim for me was like taking pills for nothing they didnt work but tegretol and zonisamide together did to a degree i went with the hard choice and had neurosurgery and from the 27th november 2013 till right now have been seizure free its been fantastic it wasnt sore in the least gettin back to full fitness was the hard part as it does floor you but its all been very worth it

  • Thanks everyone for the replies. Jules, I have never been allergic to any medication, but Keppra and Lamotrigine did nothing for me and I had some minor side effects with Keppra, too. I was fully controlled by Epilim for 7 years (!!) but just reacently had two tonic-clonic seizures about 6 weeks apart, both in situations where I knew I was at risk, so could have taken the Clobazam if it were available to me. I hope I don't have to try it out any time soon, but will be glad to have it there as a back up and will let you know how I get on.

  • Oh, I have also slightly increased my dose of Epilim from 800mg to 1000mg per day, as well, so I hiope that will help, too :D

  • I hope u get on good nothin worse having seizures that are not controlled i had abscence seizures which had turned out to be drug resistant thats why i had surgery and i am glad i did why dont u ask your neurologist about it honestly nothing to be scared off am 41yrs best move i ever made good luck big cuddles x :-)

  • Hi Amy, just joined this site recently, I was interested in your comments of Clobazam

    as my son changed his medication about 10 weeks ago, and was given Clobazam,

    we found it really helpful as he was having partial seizures everyday with the new

    change over. As you say it makes you tired. He has been taking 5mg for about a

    month, so will see specialist soon about whether to continue, because as you say

    it is addictive.

    My son is on now Keppra + Trilepta, On a separate issue is it working okay for anyone

    on this site. As my son could not seem to get seizure free on Keppra and Lamital.

  • Hi there I have never been on that med I've been on lamotrigine and phenytoin and now a new one with them gabapentin it has slowed the seizures down but bad side effects I get up in a morning and feel sick and no strength but it goes sorry I can't help Eric

  • Hi Amy! I have Clobazam prescribed as an add-on to carbamazepine and topiramate at the mo but have also had it with keppra...my seizures are resistant to most everything else but the clobazam, which I take when my clustered seizures get too much is just about the only thing which gives me a break! It does knock you out a bit but like one of the other replies said, it is better than seizures! I only ever take it for a day or two at most since I was very wary of the side effects and dependency issues too, managed right it does help though! Hope you get on ok! :)

  • Great, that is very reassuring. Thanks for your reply!

  • My son was prescribed this some years ago now. It works well for him as he usually gets a certain feeling when a seizure is imminent so he takes a 10mg clobazam and it halts the onset of a seizure. Also if and when he actually has had a seizure he takes it as soon as he can swallow to calm the brain activity down. No problems with this drug whatsoever for him.. Do hope this helps. He takes a tablet and water with him wherever he goes..... just in case.

  • I had to take this medication for the first time last week, when I was still lying awake about 3 hours after going to bed. Also took it the next night before bed. Happy to report no seizures or side effects noticed, so this has given me a lot more confidence if I need to take it again in future.

    Amy

  • Hi Im called Justine and I take it for the time of the month I think it decreases my fits so thats good.

  • Thanks Justine, that's good to know :)

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