Log in
Epilepsy Research UK
1,930 members562 posts

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.

22 Replies
oldestnewest

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!

Reply

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 :-)

Reply

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

Reply

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.

Reply

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

Reply

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 :-)

Reply

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.

Reply

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

Reply

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! :)

Reply

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

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.

1 like
Reply

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

Reply

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

Reply

Thanks Justine, that's good to know :)

Reply

I've been taking it now for a number of years & I have not found any side effects I take lamotrigine & zonisamide..

Reply

I have been taking it for my cluster seizures for 3 - 4 years now, and it definitely helps. I had to take it yesterday. I had three strong simple partials within two hours and took it. It stopped them. Maybe made me a bit tired, but that was also from the seizures! I went and had a lie down for an hour. I find that it can be very useful, but remember - take it wisely! Don't take it every day! Otherwise you will get used to it and it will stop being able to do what you want it to do!

Reply

I take clobazam daily always in the morning and only occasionally on a evening if I feel I need it. I don't find it addictive at all. i choose how much/little I take each day and try and make it as low a dose as possible. It's always been great for me and works straight away to stop fits and prevents me having a major fit. I take it along side epilim and lamotrigne.

Reply

I think it is addictive in that if you take it regularly, you might suffer withdrawal symptoms if you suddenly stopped taking it. I know they were a bit worried that I shouldn't take too much towards the end of my pregnancy in case my baby had withdrawal symptoms, but at the same time I had to take quite a lot while in labour to stop be having seizures!!

Reply

I used to take 60mg a day but chose myself to reduce it to 40mg no problem and now have chosen to reduce it to 20mg plus occasionally a extra 10mg if required. I have taken it in total for over 10years.

Reply

Several years ago this drug was also added to my dilantin . I have not had any side effects with the cobazam but I do take it in the late evening as it does make me a bit groggy. I feel like I am not an epileptic as this drug makes the weird sensations in the back of my neck go away.

Reply

I have been taking the clobazam as an add on for the last 8 years. I do not feel that it has had any negative results but you have to be careful of the amount taken 10mg is what I take in the evening with the rest of my meds. It can cause drowsiness so that is why it is safer to use closer to bed time. It stopped the hemofacial and neck spasms completely . Hope this works well for you as well.

Reply

Hi you poor thing lack of sleep not good for any of us and a big problem for all of us !!! i Was on epilim and they gave me frisium (clobazam) and I hated it I was very weak after it and just wanted to sleep I wasn’t myself for atleast 3 days I had very bad headaches and I couldn’t look after my daughter it felt as if I had, had the seizure with out having one but one that just made me sleep, which you don’t want to do or can’t do when you have children . So I stopped taking them. But every drug effect us all different and they are still looking to find something to control mine😀.i do know I have never drunk enough water and too much coffee so now I carry water with me everywhere it helps and a spoonful of marmite every morning is ment to slow activity down I’ll give anything a try can you tell 😀😀 I haven’t eaten chocolate for 17 years as sugar and chocolate is my trigger oh how I could eat chocolate!!

Anyway Frisium was bad for me I lost 3 days every time I took it and when they say we would like to offer you something else a distant cousin of frisium I always say no.

Good luck I hope you start to feel better and get plenty of sleep

Lj

Reply

You may also like...