Anyone been on Clobazam

[Duke]

my dr. myself and my wife all agreed to try the eeg video monitoring again after i had a partial right temporal resection 5 yrs. ago.
I'm taking Zonrgran 200mg/morn, 400mg/bedtime
Lyrica 150mg 2 x a day
Vimpat 200mg 2 x a day Vimpat is the drug my dr. has decided to trade for the Clobazam. I'll go in the hospital Sept. 1......at Duke University, where I had my resection done.
Before I was having 6 to 8 seizures a month. From July 1 Til' now I'v had 23. Mine are complex - partial and simple partial that cluster and last as long as 30 to 40 min.s.
Back to the Clobazam, I start it as soon as I come home from the hospital ( 5 to 7 days ) Any side effects I should be looking for, all I know about this med is that it"s not fda approved in the US and it comes from Canada. My dr. wants to try this because I've tried everything else.
Thanks for any help,
Duke

[Dutch mom]

Oh yes, my son was on clobazam for over 3 years, he used it in about 6 different combinations of two anti-epileptic drugs (f.i. Toparimate, Ethosuximide, Valporate, Lamotrigine, Levetiracetam, Phenobarbital and Felbamate.)

Clobazam seemed like a wonder medicine for about 3-4 weeks, then the seizures returned and we had to increase the dose. This happened again and again. When he was on a maximum dose and still was suffering from many seizures again, we tried to wean it off. It appeared to be a rather addictive med. Lowering the dose caused serious withdrawl effects and increased his seizures. Not one of all other meds was as difficult to wean off as clobazam was. We managed to wean 10 mg Clobazam off with 0.5 mg per 3 weeks and still we saw seizures breaking through the ketogenic diet (he was about 1 year allmost seizure free on the diet by then) for 2-3 days each time we lowered the dose with just 0.5 mg.

Clobazam is one of the benzodiazepines, which can definitly be very effective in stopping seizures. But usually only in a transient way unless the dose keeps on being increased as tolerance to the drug occurs. For that reason, in my opinion they are best kept as emergency meds for prolonged seizures.

The benzos act as a 'top up' to the GABA in the brain, a neurologist inhibitory chemical, meaning everything is 'subdued' when the GABA level is increased, including seizure activity. But the tolerance aspect comes about when a compensatory mechanism starts occurring, that is - due to the regular artifical top up, the body starts producing less natural GABA, meaning the overall level drops down, requiring another med increase to keep the status quo, the natural GABA production drops down again, another med increase is required, and so on...

Apart from the tolerance problem if using them as regular anti-epileptic drugs, the benzodiazepine meds can become less effective in a one off emergency situation, as the brain is already 'used' to this class of med, and so a lot more is required to have the same effect.

Personally, I'd try and stay away from any of them as regular anti-epileptic drugs, as once one is addicted to them, it can be a long hard process withdrawing them off again.

Yes, the weans can be awful - which is also obviously tied into the GABA levels. As you reduce the dose, the GABA levels drop down below what they were previously, and so the brain is in a neurologist excitory state, and so the seizure threshold is lowered until the natural GABA production kicks back in once the brain realises it has a shortfall. That is when they (hopefully!) stabilise, and then you do the next reduction, go through it all again, and so on.

We had 3 1/2 yrs of the see-saw adding/reducing/weaning benzo process with our son and the comment from one of the Fleetwood Mac members "benzodiazepines are harder to withdraw off than heroin" used tor ring in my ears throughout the process.

Clobazam can be very effective but... better not increase the dose again and again in case tolerance occurs!

Here http://www.benzo.org.uk/manual/bzcha03.htm (several chapters) you can find a lot of information about the benzodiazepines and how they work in the brain, including the side effects and how to withdraw.

[Duke]

Dutch mom,
thank you for all the information. This gives me a good head start as far as information goes. Thanks again,
Duke

[vixster]

just been prescribed it - but only for the 3 days a month that I usually have siezures - will let you know how I get on with it

[sandi]

Thanks Dutchmom that's one of the easiest explanations of benzo and brain activity I've read.
I use low dose benzo med as I'm not on E meds. So I worry about the addictive
nature.
Funny we never worry about increasing dilatin or other meds- of course some are addictive as well..
I's hard to believe that they can't design a good Benzo, that lasts long and isn't addictive.They Know it works and without side effects that are too bothersome.

[Rae1889]

Clobazam is one of the benzodiazepines

it is prescribed in canada under great restrictions and care as it is used as a "date rape" type drug here. and can overdose easily on it.

[sandi]

I believe it was called frisium , when I looked it up. Didn't know about the Date Rape part.
The Benzo are pretty sought after in US as well. They are so highly regulated
Dr's have quota's here only allowed to prescribed.If the write to many RX's they get audited.
Ritalins the same way as well.