Epilepsy Foundation

Am wondering if any of you take this as a night medication only? Dr ordered a 3 week titration  ending with 5 mg in am/7.5 in pm.....We started week #2 this week with a small dose just 3 days ago. The first week she seemed fine (5 mg night only), (woke up super charged, etc) but week #2 seems a bit loopy at times (and I even am titrating up to the suggested dose by a few days-gave her 2.5 mg in am and not the full 5 mg yet)...

I am just wondering if it takes more than a few days to adjust this med...or  if it can be issued as a night med since that is the problem?

I should also mention we are weaning back depakote (still at 250 mg in am/375 pm) eventually to go to zero and 100 mg zonegran at night only(already there).  So in essence we are on 3 (uggh) to get to being on zonegran only and then I am not sure the plan for the length of time on frisium...

However, I still wonder if it is the underlying problem is  zonegran to begin with causing these issues to pop up because it all started w zonegran (our main med) when we started w zonegran....

I

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I think they are 2 different medications though?/ (Clozabam and clonazepam)....

Just chiming in. My son who has ESES has been on clobazam for about a year now with am/pm doses. We initially had a midday dose too. We did slowly ramp up 5mg at a time if I recall but we didn't really see any effects from the med. We were having a serious problem of having ESES 24/7 at the time and I think that's what we were seeing effects from. We have also don valium and klonopin as our rescue drug. Like Marnie's Ana, not much will take my son down - constant seizures and post-ictal sleep are about it. When we did high dose valium in the ICU (40mg) my son didn't even take a nap!! We will also have the uncontrollable hypers coming off of klonopin and valium. I will say that clobazam has not affected my son this way. We haven't seen any increased unwanted behaviors with this benzo. BTW it really didn't do much for the ESES either. He is currently on 25mg. 10mg in AM and 15 in PM. I looking to get rid of it since amantadine seems to be doing all the work right now. Weaning benzos is slow going.

Charlene

Vanessa, the problem was that when Ana was first diagnosed the doctors told us her seizures would likely never be controlled and that she would always need heavy duty drugs because of how extensive and how deep her brain damage is.

To this day I have no idea why her doctor at the time made the decision he did. She'd only been diagnosed a year earlier. She had been on high doses of phenobarb but it was holding back her rehab especially language. His exact words to me were - her seizures aren't as scary as you think they are... I don't think he meant to hurt her, I just don't know why we didn't move on to tegretol or another AED? Leaving her on just clobazam was like not treating her at all so she had no protection. She has a tendancy to go into status even now when she's on depokote and tegretol.

4 years later I still can't forgive myself for being bullied into his treatment plan :( He was severely reprimended and taken off the epilepsy team.

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