Clobazam (benzodiazepines) and withdrawal

Dutch mom

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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.
 
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Kgartner

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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.
Yeah, I know all about this! I am hoping that since this drug NEVER really worked for Annika that we won't see this effect as we reduce. We are going very slowly just to be sure, and so far so good - no withdrawal seizures and we've decreased more than 30% already. But I know many people who have gone through what you are talking about.
 

seagull

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Very true - and we found it important to stick to a very strict schedule with Onfi. Because there is a danger of withdrawal seizures you do NOT want to be going up and down on this medication!

I did a ton of research on Onfi when Annika switched to it. While it is a benzo, it does have a different chemical structure than the more common benzos such as lorezepam etc. It seems to be less likely to cause tolerance than other benzos, and it has been used in Europe and Canada for years with good success under the name "Frisium". It just didn't work well for her at all.
frisiun that's right..They prefer prescribe as clobzam it cheaper that way..It only prescribed to people with e..Nhs will not allow it for anything other than e and nurelogist has to be one to say gp can only give it then..
 

seagull

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I just had look at my box of colbazam.as I thought frisium trade name and in uk it is never dispensed under frisium any more...it comes in 10mg dose.i take one at night I can also take two on top when ever I need to..If I have bad migraine or feel may have seziuer I can take two..they shorter duration than other benzo within an hour all effects have gone where Valium would last longer..Anything else you want to know if I can help just pm
 

zombelina

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Thank you seagull, Belinda, Bernard, Kgartner, Dutch mom and masterjen. Quite a wide variety experiences with clobazam here. But it sure sounds like some of my concerns were valid. I'm glad the Vimpat is helping Annika. Thank you very much for the links, Dutch mom, I will be sure to check those out. :)
I had a doctor's appointment this week, and we decided not to mess with anything for now. Kind of settling for "good enough" at the moment, as I'm not ready to go through side effect hell yet again. I'm happy with this choice, and all of your responses certainly helped. I'm sorry for not replying sooner - I figured it would be worth it to wait until after the appointment. Thank you!
 

seagull

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I given it take as needed,my other meds same,,I would make sure I had colbazam in the house for emgerncy,,,I know when get sez take it quick and prays works on time
 

Blonde Angel

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My Daughter was on Clobazam as previous posters have stated it needs to be taken every day.
The problem with benzodiazepines is they can be addictive and people do build up a tolerance to them quickly. A great dosage is required to get the same effect, with this comes great side effects.
@ zombelina
Research as much as you can about GABA as its the main neurotransmitter linked to anxiety. eg deficiencies in GABA are associated with several symptoms like anxiety, inner tension, feelings of being overwhelmed, restless mind, insomnia, excessive worry..
 

zombelina

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Thanks for asking. I met with the doctor and we decided not to make any changes at this time. I don't doubt that the time will come to make a switch, and I'm glad I'm more educated on the drawbacks of clobazam. Thanks again :)
 

Belinda5000

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I tried Onfi and and it didn't do a thing for me, My seizures were just as bad if not worse.
 
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If (as mentioned above)
It is clobazam it has been around in the UK at wide availability for a long time.

I was on it, but even a tiny dose made me sleep all the time!
I kept falling asleep when I was out and missing stops on busses...then of course my seizures moved to during my sleep.

I feel much better being off them.
But they have done wonders for other people I have spoken to. Hopefully they will for you too. X

Sent from my SM-G920F using Tapatalk
 

Alberta

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Benzodiazepine Withdrawal

Hi everyone, I am wondering if anyone has had any similar experiences. I have been on Frisium(clobazam) and Tegretol for 17 years and had to stop taking the clobazam. When I started, nobody explained about the withdrawal effects of the benzodiazepine family of drugs. I made it right down to dropping the last pill before the withdrawal really increased. The symptoms include no appetite whatsoever, tingling all over the body, joint pains, ear ringing, and metallic taste, among other things. Has anyone else gone through something similar, and primarily, does anyone know of any natural methods to ease the different symptoms? The doctor prescribed Ativan which gave worse side effects than the panic I was going through last night. Also, does anyone know the range of time this might last for? Your help would be totally appreciated.
 
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Frink

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After long term use, getting off of benzos can take 12-18 months with a very gradual taper of dosage.
Withdrawal effects from going cold turkey can be severe.
Weird that Ativan would cause worse side effects than frisium considering both are benzos, but they are different drugs.
 

Alberta

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Thanks for the information. They tapered me over an 8 week period so I am already off....
 

Kgartner

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That is a REALLY quick withdrawal schedule for a benzo after you've been on it that long. Was there a reason your doctors put you on such a quick wean?

We are very gradually tapering my daughter's clobazam. She started it at 20mg/day in 6/2014, and was up to 55mg/day by 11/2014 but it never really worked for her. We started weaning about 14 months ago after she started on Vimpat, and she is now down to 30mg/day. We are ready to take it down another 5mg soon. I expect in the end it will take 18-20 months for the full wean.
 

Alberta

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My doctor scheduled the withdrawal over the same period she was introducing lamotrigine - tegretol level stayed the same. I had no idea that these effects would come of after it was complete. It's good to hear that your daughter is coming of really slowly. Hope the new med is going well.
 
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Yes I went through withdrawal and had the full spectrum of physical symptoms--nothing psychological though. Mine were those weird 'inner vibrations,' muscle spasms (one of the worst symptoms that took a long time), ear ringing, really persistent insomnia, twitching, worsening myoclonics, shortness of breath. It was bad for about 2 months, then I'd have windows where I would feel better, then bad, then better, like that--for me it was 5 months or so. I'm told that was fast withdrawal but I don't know--I think some people obsess about the withdrawal and count every negative symptom as withdrawal. Try magnesium, deep breathing and meditation--those were by far the most effective tools for me. I'm very glad I am off them so stick with the program--going back can cause the next withdrawal phase to be much worse.
 

Alberta

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Thanks so much for the good info. Last night I had a bad complex partial that I haven't had for a long time so it's nice to know that happens. The good news is no withdrawal feelings this morning! Good reminder to get back on magnesium. I will not be going near a benzodiazepine ever....
Can I ask how long you had been on a benzo?
 
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I was on clonazepam daily for 7 months, but periodically for years before that, escalating in frequency--so really, not that long. But long enough for tolerance to set in.
 
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