Epilepsy and Benzos...

[Tracey1986]

My doc has tried to put me on klonipin before, I was too worried and didnt take it. I dont like stuff that makes me drowsy. Some people think they help. Should I give em a try? What do yo think of using benzos for helping with epilepsy?

[Nakamova]

Benzodiazepines can be problematic because they sedate the central nervous system -- it's like feeling tipsy or drowsy in terms of how it affects your judgment or motor skills. Long-term, they carry the risk of dependence, and also the risk that you build up a tolerance and need to keep upping the dose. They tend to be prescribed on a short-term or emergency basis. Klonopin is usually just prescribed for myoclonic seizures and absence seizures (rather than tonic-clonic seizures).

[ajax]

I've had some luck taking benzodiazepenes on an as-needed basis when I can tell it's 'one of those days' or i'm having partial seizures. However, in building up a tolerance to these drugs, you run the risk of having no effective course of action in the event of a status seizure. The more they have to administer in the event of a prolonged episode, the longer it takes.

As far as I know, there aren't any other good drugs out there that will stop a status seizure. It seems like a big risk to build up a tolerance, but maybe it's less of a concern than it strikes me as being. None of my doctors have ever made a big deal about it, but they've also poo-pooed a lot of the MAJOR side-effects I've experienced on some of these medications.

[Dutch mom]

(Copy from another thread about the benzo's)

Oh have we been there: the benzodiazepines. Nasty stuff, especially for kids.

My son was on clobazepam and clobazam for over 3 years in combination with different anti-epileptic drugs. Another mom once explained to me in a very clear way why succes with the benzo's often is temporarely and why we've had so many problems to wean them off.

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) stabilize. 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 a whole year, 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.

I know parents who swich between the used benzo's to prevent this tolerance effect.
Seems tricky, but however this study about the 'benzo switch' is worth reading.

http://highwire.stanford.edu/cgi/medline/pmid;18754904?

'Using the "benzodiazepine switch" in difficult childhood epilepsy'.
R Chatha, M Huyton, D Hindley, and M Clarke
Dev Med Child Neurol, August 1, 2008; 50 ( 8 ) : 635-6
University of Manchester, Manchester, UK.

You do have to be registered to read the article.
I received a text copy (Dutch translation) but I don't have an English copy.

[ColmanMac]

Agree with Nakamova, Tracey - Tread careful

[ajax]

That was an awesome explanation, Dutch Mom. Thank you for that. I am fortunate to say I've never been on clobazepam.

Along the same lines of withdrawal from benzos, I have definitely noticed rebound seizures many times after taking these meds- seizures during times of the day that were'nt typical for me. When it occurred to me finally what may have been going on, I found the times of the seizures coincided with the half life of the benzo.

I agree that this class of drugs should, as much as possible, be used for emergencies only.

[Endless]

Now I see why my epileptologist is reluctant to prescribe these, even when only for occasional use. Thank you for that explanation.

[Dutch mom]

This is a very useful website about the benzo's: http://www.benzo.org.uk/manual/bzcha01.htm
How they work, what the benzo's do in the body.
How to withdraw.
Side effects & withdrawl effects.
I've done a lot of studying on the benzo's, clobazam was our nightmare med.