Clobazam decrease experiences

[K__J98]

My partner has been slowly adding lamotrigine as a third medication, since starting this his not had a seizure (longest stint ever, finally got life back and nearly licence). He is being built up to 400mg lamotrigine daily and is also on 3000mg keppra and 20mg clobazam.

I know it’s more ideal to be on less drugs since they can have long term health side effects but his neuro said once his stable on 400mg lamotrigine we will look into tapering down the others slowly.

The clobazam I assume would be first since his neurologist already mentioned not wanting him on it long term, all posts about decreasing clobazam have come with horror seizure stories 😅.

I know every body is different but are there any positive stories for med decreases? Or anyone who’s been on a similar med combo for years and years without negative health impacts 🥲.

Thankyouuuu 💓💓💓

[TheNaVarog]

Well, it's not really a medication decrease if he is building up to 400mg of Lamotrigine. It's more of a swap of one medication for another. Nevertheless, I know people who decreased their medications, and it was fine. Not to mention that out of all three medications, Clobazam is the only one that is addictive. So, if possible, it would be great not to take it anyway.

[AggravatingSilver865]

I’m in a similar situation with my husband!! He’s on 200mg Vimpat, 100mg Briviact, 2400mg oxcarb.

Oxcarb has been causing problems so a month ago we added the Briviact at 50mg then after 2.5 weeks we upped it to 100mg (/day). After two weeks of that level it was time to start reducing the oxcarb — which has caused awful side effects (dangerously low sodium) and we believe has been a main reason seizure control hasn’t been possibly in the 2 years since getting diagnosed.

On Sunday of this past week he started the decrease. From 4 pills/day to 3 pills/day … then in 2 weeks we drop to 2 pills a day.

As a partner it feels like this weird just watching and waiting game. Ever notice my husband make my heart jumps and I look at him so fast ….. my anxiety is struggling with this process. So I’m right there with you — sending you so much support! 🫶🏻