Confused about clobozam

[Mindymork]

Hi I’m new to the forum

I’ve had epilepsy for 10 years, for the first couple of years it was fairly well controlled with various doses of Keppra, im now on 3000mg.

My epilepsy is tonic clonic with a couple of seizures per year (always when I’m over tired or travelling abroad) I always end up in hospital due to injury (burns, needing stitches etc) and I tend to get clusters of seizures.

This past year my seizures have gotten worse and I’ve started have panic attacks and very vivid dreams that I’m having seizures. My nero has prescribed 10mg of clobozam at night time. I’m not sure it’s helping and I’m worried as I know it’s a benezodepine.

I’m also taking amitritlyine to help with sleep. Just seems like alot of sedatives and I find myself feeling out of it at work or socially.

Has anyone experienced this?

Thanks

[Ronamac]

Hi Mindymork,

I have had epilepsy for almost 20 years and for probably 15 years plus have been on Keppra, now on 1500mg twice daily for around 8ish years.

Around 8 years ago Clobazam 10mg was added at night as I suffer mostly night seizures.

The addition of Clobazam, helped greatly. I was able to learn to drive and for once get some independence.

When I was first prescribed Clobazam, I was told to take it with my evening medications 12 hrs after my morning dose, now I take it 30-45 mins before bed.

I seen a consultant last week. He said it is all a balancing act, what works to control your seizures but allows the best quality of life with the least side effects.

I also suffer seizures only once or twice a year so he said it would take longer for me to see any improvement or if the medication is going to work. I will likely need to take it for 6-12 months to know if there is an improvement.

When I was first prescribed Clobazam, I felt the same regarding it being a benzo. My consultant, at the time, said if I didn’t try it I would never know if this would be the drug which could possibly help control my epilepsy.

I hope you find the right balance of medication that works for you.

[Mindymork in reply to Ronamac]

Thanks for your response. Since taking it I have noticed some improvement in my sleep which is good!

Have a follow up with my neurologist in the next week

[Mybraveface in reply to Mindymork]

I had nocturnal seizures after epilepsy was triggered by surgery in 1989 on my temporal lobe to remove 2 cysts. I continued to have the seizures 2 of 3 nights a week for 10 years despite trying a host of various medications until a registrar suggested trying clobazam...... the seizures stopped within 2 weeks, and never returned - apart from when my GP stopped clobazam due to her concerns about it being a benzodiazepine. As soon as I got back on clobazam I was OK again, and still taking it now without nocturnal seizures. It is an essential drug for me.