adding a new medication... Clobazam?

[Chris515]

Hi Everyone,

I talked to my neurologist about my recent increase in seizure activity - specifically simple partials and many many auras that are disrupting my normal life.

He said I'm on the high end of the Lamictal dosage (550 mg daily) and he doesn't want to give me more of that, so he is adding on another medication - Clobazam. He said I will be taking a small dosage of this at night.

Does anyone else take this combination? Anyone have experience with Clobazam?

Thanks!

[Nakamova]

Hi Chris515 --

According to wikipedia...

http://en.wikipedia.org/wiki/Clobazam

...the main drawback of Clobazam is that you can build up a tolerance to it over time. It's also prescribed as an anti-anxiety drug.

[Dutch mom]

Hello Chris,

My son was on valporate, lamictal and clobazam at age 3. He has used clobazam for over 3 years in different add on combinations with several anti epileptic drugs. The 'getting used to it effect' made us increase the dose again and again when his seizures increased again. Weaning him of clobazam was really awful with many withdrawl symptoms and breakthrough seizures (allthough he was seizure free on the ketogenic diet before weaning of.) It took us six months to get rid of clobazam and - med free- regain status quo on the ketogenic diet.

Nasty stuff, seems like a wonder drug when effective, for a period. Be carefull and don't increase it too easy.

I've posted on clobazam and how it works before, here Isabella's un-diagnosed siezure disorder
message number 7 'About the benzo's as a regular drug in combination therapy'

The benzo's can be very effective in stopping seizures but usually in a transient way, unless the dose keeps on being increased as tolerance to the drug occurs. For that reason they are best kept for emergency meds for prolonged seizures.

The benzo's act as a 'top up' to the GABA in the brain, a neurologist inhibitory chemical, meaning everything is 'subduced' when the GABA level is increased, including seizure activity. But the tolerance aspect comes about when a compensatory mechanism starts occuring, that is -due to the regular artifical top up- the body starts to produce less natural GABA, meaning the overall level drops down again, requiring another med increase to keep the status quo, the natural GABA 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 benzo's can become less effective in an 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.

Weaning of benzo's which are used on a regular base can be awful, which is also tied into the GABA levels. As you reduce the dose, the GABA levels drop down below what they were previously; the brain is in a neurologic excitory state, and so the seizure threshold is lowered until the natural GABA production kicks back in once the brain releases it as a shortfall. That is when they (hopefully) stabilise. And then you do the next reduction, go through it all again, and so on.

Three years we've been adding/reducing/weaning benzo's (mainly clobazam) in combination with valporate and several 3rd drugs. When the ketogenic diet appeared to be effective, we had no problems weaning of the current two anti-epileptic drugs. But weaning of clobazam took us 6 months, a dramatic process. We were weaning of 10 mg with only 0,5 mg per 3-6 weeks and still he was having breakthrough seizures for a week each time we weaned of 0,5 mg.

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[Chris515]

Thank you Nakamova, Dutch Mom.

It does not sound like the best med for me to take... yikes.

I think I'll stay away from it. I don't feel like it was really justified by my neurologist as it was a 30 second conversation over the phone - basically "I'm having more partial seizures and auras" to which he replies "I'm going to put you on Clobazam. Talk to you later."

He's a great doctor but just so incredibly busy that our phone conversations last 30 seconds and I see him in person for 10 minutes twice a year.

Dutch Mom - it sounds like your son had an awful time going off of Clobazam. I hope he is doing well now.

Thank you both for all the information. I think I'll stick with Lamictal! I'm starting to feel a bit better anyways. Sometimes it feels like a large part of my seizure triggers is just plan randomness... so I'll just go with that in regards to my recent 5 day activity spell.

[Dutch mom]

Hi Chris,

Here's a good site about the benzodiazepines

http://www.benzo.org.uk/manual/bzcha01.htm

[Chris515]

Hi Dutch Mom,

Wow, that is a good article. Thank you.

Now it all makes more sense. The thing that concerns me is that my neurologist wants me to be on clobazam from now on. It does not seem like the kind of drug suitable to that. So I'm just going to stay off of it... the long term effects do not seem worth it at all.

[darcness]

Both my and my wife have used/use benzo's. I got prescribed with them for my anxiety, which was a result of witnessing my wife's 3rd tonic clonic seizure. I had daily anxiety and really bad panic attacks so the doc put me on Zoloft and Xanax to help for short term. For the short term, the Xanax worked very well. Then the Zoloft kicked in and I rarely need it anymore, if at all.

My wife is very similar. Now that her E is under control and she switched to Lexapro she's needed the benzo's much less.

We both use them for emergencies only. Such as when a panic attack comes on, during medical procedures like MRI's, stuff like that. For short term or emergency use they were a life saver for me to be honest.

I think when it comes to benzo's, taking them as a daily dose should always be a carefully monitored thing. They can cause dependency and are highly addictive to many people. Does that mean everyone will become addicted or dependent? I don't think so. However, seeing as that is a risk, using them PRN (as needed) is much more preferable to a daily dose to me. I think they have their place and are great and safe medications as long as they are used for what they were intended. I think the problem comes when they are taken every day and a dependency or addiction is developed. That's why it's so important to monitor something like this. For those who need them PRN, I think they can be a great medication. I do think they should be more relegated to MI rather than epilepsy though.

[Chris515]

Yeah I've used a benzo before too, Lorazepam. For anxiety and OCD.

It's hard to say if I could be addicted or not, but it's not worth the chance for me. I became addicted to coffee pretty easily so that's not a good sign.

I remember using Lorazepam for an MRI, it helped so much.

Thanks for the advice everyone.

[Dutch mom]

Well spoken darcness.
When used wise (not too many and too often or switching benzo's) and used as emergency drugs, several benzo's are terrfic add on meds together with anti-epileptic drug's to control seizures.
We still do use clonazepam as a occasional drug to break the big tonic clonic's and repeated series of seizures. Occasionally, I'm glad to say, wich is why this benzo still is so effective when needed by my son.
I do know kids with a total tolerance for benzo's and when they get into status, they have to be admited to get midazolam IV. Brrrr.

[Meetz1064]

take clonazepam on a daily basis, for about 1.5 years now. I had done so previously before, for 2 or 3 years, but I told the neurologist I had no desire to be addicted to it, and wanted off.

Mind you, my dosage is so low, even at twice a day, it's near to impossible to become addicted.....but for some it would be.

So far, it's the only benzo I've taken.......and I don't really want to mess with any others. I don't like that family of drugs........I've seen what it can do to some of my friends' kids.....