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My son used clobazam (brand name Frisium here in Holland) for about 3 years as an add on to several combinations of two AEDs.
After starting clobazam it worked for a short time, his seizures decreased and it seemed a wonder drug. As a side effect he had a contradictory reaction: it made him hyperactive and he couldn't sleep,
After two months the positive effect disappeared, his seizures increased again and the neurologist increased his dose of clobazam. Again it worked for a short while until the effect disappeared, again the dose was increased and so on, until he was on the maximal dose and it didn't work anymore.
After starting the ketogenic diet successfully, we started to wean of all his meds. Two AEDs were weaned of without any problems but the clobazam wean was hell. Each time we decreased the dose, his seizures increased for a few weeks. We asked the pharmacy to make capsules with just 0.1 mg less active clobazam and we weaned off 10 mg with just 0.1 mg per month. And still we saw 2-3 weeks increased seizures each time he got 0.1 mg less clobazam. So it was really an addictive drug for him.
The benzo's and especially clobazam do increase the GABA in the brain. The body adjusts to that by making less GABA itself and remains the status quo, When less GABA is active in the brain, the seizures return until the dose is increased, again the body starts making less GABA until the status quo is back and so on and on until the maximal dose is reached and the drug doesn't work anymore.
When weaning off the clobazam, the opposite happens. Less medicine = less GABA in the brain, the body starts making more GABA itself until status quo is reached again. When decreasing the dose again, the same mechanism occurs again and again until the drug is out of the system. And one might think the drug was working because a reduction of the dose causes more seizures.
Nasty stuff IMO.
A real good website about the benzo's (and weaning off benzo's when addicted) is from the 'Beat the Benzo's' campain in the UK : http://www.benzo.org.uk/btb2.htm
See the FAQ's here: http://www.benzo.org.uk/FAQ1.1.htm
The complete text under the list of links, mention nr. 2 'How do the benzo's affect your body' and nr. 8, about the 'Benzo Withdrawal Syndrome'. These were very helpful for me to understand what was happening after the diet seemed to be such a success but the seizures returned when weaning of clobazam. Without this information I think we would have stopped weaning of and he might still be using the drug now.
After starting clobazam it worked for a short time, his seizures decreased and it seemed a wonder drug. As a side effect he had a contradictory reaction: it made him hyperactive and he couldn't sleep,
After two months the positive effect disappeared, his seizures increased again and the neurologist increased his dose of clobazam. Again it worked for a short while until the effect disappeared, again the dose was increased and so on, until he was on the maximal dose and it didn't work anymore.
After starting the ketogenic diet successfully, we started to wean of all his meds. Two AEDs were weaned of without any problems but the clobazam wean was hell. Each time we decreased the dose, his seizures increased for a few weeks. We asked the pharmacy to make capsules with just 0.1 mg less active clobazam and we weaned off 10 mg with just 0.1 mg per month. And still we saw 2-3 weeks increased seizures each time he got 0.1 mg less clobazam. So it was really an addictive drug for him.
The benzo's and especially clobazam do increase the GABA in the brain. The body adjusts to that by making less GABA itself and remains the status quo, When less GABA is active in the brain, the seizures return until the dose is increased, again the body starts making less GABA until the status quo is back and so on and on until the maximal dose is reached and the drug doesn't work anymore.
When weaning off the clobazam, the opposite happens. Less medicine = less GABA in the brain, the body starts making more GABA itself until status quo is reached again. When decreasing the dose again, the same mechanism occurs again and again until the drug is out of the system. And one might think the drug was working because a reduction of the dose causes more seizures.
Nasty stuff IMO.
A real good website about the benzo's (and weaning off benzo's when addicted) is from the 'Beat the Benzo's' campain in the UK : http://www.benzo.org.uk/btb2.htm
See the FAQ's here: http://www.benzo.org.uk/FAQ1.1.htm
The complete text under the list of links, mention nr. 2 'How do the benzo's affect your body' and nr. 8, about the 'Benzo Withdrawal Syndrome'. These were very helpful for me to understand what was happening after the diet seemed to be such a success but the seizures returned when weaning of clobazam. Without this information I think we would have stopped weaning of and he might still be using the drug now.
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