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  #21  
Old 07-27-2013, 05:17 PM
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Im on clobazam I take 10mg a night 3 weeks of a month and 5mg at night the 4th week and then repeat it runs in line with my monthly cycle ... when I was first put on it I noticed nothing but now im getting partial crop up and pop in ...but my tonic clonic seizures are decreasing ...so im not sure ... I know that it can be used for anxiety but it seems to have made me more anxious and I get veey snappy now

I take it along side keppra 1000mg twice a day

Lack of sleep and the heat are big triggers for me so I cant put it down to the clobazam just yet ...in off down to london to see the epilepsy society specialist on monday so ill be asking lots of questions but ive only been on clobazam for 1mont at the moment this is my second month

Sorry if I just blabbed a load of rubbish but that my experience with clobazam
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Keppra 1000mg - 8am + 1000mg - 8pm
clobazam 5mg - 8am + 10mg - 8pm

simple/complex partials
genralised tonic-clonic seizures

~If you don't like something change it; if you can't change it, change the way you think about it.~
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  #22  
Old 07-27-2013, 06:16 PM
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No blabbing no rubbish all good!

I think I am processing a lot of stuff aloud. So any shared experience insights are really welcomed.

Forgive me repeating myself if you wondered off and looked at my intro blog.

But I was titrating up on the zonismide from 200mg to 300mg in 50 mg doses and on the third week after constant headaches there was a rather severe irrational thinking moment so was whipped straight off the additional 50 mg of zonismide and put on the Clobozam which was just for a month. But am worried how they will taper of a benzo as I've read it can be tricky even with short term usage and low dosage (when I say I have read I mean hubby I get scared reading the poxy side effects and worry about nocebo effects).

I tend to get side effects from very low dosages of meds and they do tend to send me crazy. Though wether that is fair to blame the meds of my natural tendancy to go a little bit depressed from time to time I don't know. I cry a lot and stare at walls if hubby doesn't pit telly on.

On Keppra I thought I was being poisoned so had to be whipped off that.

Good luck in London, would love to know how you get on.

Also did you have any other aid effects and how long did they last. Are you functioning relatively ok for someone on a couple of anti-epileptic drug's?

I find I get ridiculous weakness late at night, swaying and drooling (tres sexy) as opposed
usual suspect of tiredness word finding difficulties that I have on zonismide.

Many thanks for your time

Q
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  #23  
Old 07-27-2013, 07:23 PM
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I can't say if Clobazam made my seizures worse, but it sure didn't help any. It also gave me issues with urine retention - yeech!
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  #24  
Old 07-27-2013, 07:38 PM
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Thanks MasterJen, howling were you on it for?

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Old 07-27-2013, 08:08 PM
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I was on it for 6 months, including the tapering on process. If I remember correctly, my peak dose was 10 mg twice per day before we gave up on it.
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  #26  
Old 07-28-2013, 05:31 AM
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Can I ask how long your taper off process took?

Cheers

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  #27  
Old 07-28-2013, 08:41 AM
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The two main side effects im getting is weight gain and extreme tiredness I can just about sleep all hours of the day if people let me ... but they could also be the keppra xx
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Keppra 1000mg - 8am + 1000mg - 8pm
clobazam 5mg - 8am + 10mg - 8pm

simple/complex partials
genralised tonic-clonic seizures

~If you don't like something change it; if you can't change it, change the way you think about it.~
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  #28  
Old 07-28-2013, 12:18 PM
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I started with 10 mg at night, was on that for 2 weeks, then added 5 mg in AM (we weren't sure how sleepy it would make me) for another 2 weeks then finally moved AM up to 10 mg by end of week 4. So, a month for tapering on.
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  #29  
Old 07-28-2013, 03:39 PM
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Cheers again x
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  #30  
Old 07-28-2013, 05:05 PM
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Interesting to read of others and clobazam... I have been on it for 3 years (possibly more but wife remembers about 3) and it really has never been a plus or a minus for me. My neurologist was going to take me off it but when I went to only one 10mg a day I started getting multi seizures - for me this is usually 1-5 per day. Even getting back to my regular amount I was taking, the seizures didn't quit back to my norm which was about 2-3 seizures thru the year.
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  #31  
Old 07-29-2013, 05:05 PM
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Sorry to hear its been problematic for you.

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  #32  
Old 08-06-2013, 03:15 PM
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Well hubby tracked down neurologist secretary and it looks like I am going to be taken down to 10 mg of Clozobam at night until my scheduled appointment in November.

See GP in the morning and I can talk over my worries about withdrawal and my crazy.

Q
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  #33  
Old 08-14-2013, 06:34 PM
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I take clobazam 15mg 4 times a day for the first 2 days prior to and then for the duration of my 'lady time' which is a huge trigger. Only taking it for that short time each month means you don't really get to adapt to the side effects before its time to stop taking it.

I have found the drug to be a catch 22. Without it (at one point it was peeing me off so much I tried a period without) and my seizures were dreadful, longer, more severe, clustering. However when taking it, I find the side effects of the medication almost seem to cause triggers - I don't sleep properly on it, my mood is low, I'm exhausted from the lack of sleep and lose my appetite, all of which can be seizure inducing. But then I find if those side effects DO result in a seizure, they are much milder in comparison to without clobazam so it's a tough one.

I have tonic clonic and absence seizures so I know our situations are different but that is my experience with the drug. It's a powerful one and 60mg all of a sudden each month can knock me for 6.

Sorry if I've got the wrong end of the stick! Good luck.

Amy
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  #34  
Old 08-14-2013, 06:47 PM
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No it's all been helpful (and maybe helpful to someone reading at a latter date!).

Well the taper was a bit of a train wreck going from 20 to 10 ended up with weakness, jelly legs, insomnia, after 3 days myclonic seizures hit like a steam trains, the day after a t/c. Gp said perhaps the 50% taper was, in hindsight too much too soon.

Said I didn't want to mess around with the dosing think I am through the worst.

Q
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  #35  
Old 08-14-2013, 10:39 PM
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Tapering off for me was pretty quick - 5 mg a week (so a month total).
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  #36  
Old 08-15-2013, 07:53 PM
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Clobazam dosages


How much clobazam would you say is a 'normal' dose. I know everyone is different and experiences seizures of varying types and severities, and requires clobazam for different reasons or only as a temporary add on drug, say once a month.

But I read somewhere that 20mg of clobazam is the equivalent of 10mg of diazepam, which is what I've been given as an emergency to treat prolonged tonic clonic seizures, so I associate diazepam as a serious, life saving drug. So does that mean clobazam is a very strong drug and I was just wondering what you would say an average dose was? And how does it make you feel?

Stay safe

Amy x
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  #37  
Old 08-15-2013, 11:12 PM
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Like you said, everyone is different, but i did find this:

Quote :
The recommended adult dose of clobazam ranges from 5 mg to 80 mg daily, as directed by your doctor, taken in 1 or 2 doses with or without food. Doses up to 30 mg daily may be taken as a single daily dose. Higher doses must be split into 2 daily doses. The dose is usually started at 5 mg to 15 mg daily and increased gradually as needed. For children 2 to 16 years, the starting dose should be 5 mg daily, increased gradually to a maximum of 40 mg per day. For children younger than 2 years, the starting dose is based on body weight. If you have reduced liver or kidney function, your doctor may recommend a lower dose.
My daughter is 3, and she has just been given clobazam and told to take 7.5mg/day when sick for 2-3 days. If she has a prolonged seizure/cluster we are using ativan.

I know others that use it as their emergency rescue drug as well, so i guess it is one of those drugs that can be used in a variety of ways. The only side effect we ever noticed (she was on it daily for 8 months when she was 6 months old) was that it made her a bit groggy. Good luck, i hope you don't have to use it!!
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  #38  
Old 08-16-2013, 02:11 PM
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Did you experience any side effects tapering off MasterJen?

In other news ... Psychiatrist wants me back on mirtazipine and wants me to titrate up to 45 mg but he is going to get GP to pescribe.

But on the plus aide gradually feeling much better. Myclonics about but not another t/c.

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  #39  
Old 08-16-2013, 02:39 PM
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Ativan is the American version of lorazepam right? (Sorry if that's wrong!).

I take clobazam for around 5 days a month to (attempt) to control hormonal triggers. During this time I take 15mg, 4 times a day, so that's 60mg a day which knocks me off my feet. And then when I did this research about then diazepam equivalent, 30mg of diazepam seems like a huge amount too. I then have rectal diazepam for emergencies/clusters, like your use of Ativan.

My neurologist told me that if I can, to take 10mg tablet as soon as I feel an aura coming on. By the time I've figured out I'm having an aura, have found the clobazam, got it out of the packet, had a drink and allowed it to actually be absorbed, that is really cutting it fine to say the least! Especially as if I'm lucky an aura will give me 5 minutes max. By then it's usually too late for the clobazam to stop anything but I have noticed that it may stop the seizures clustering/reduce the severity.

I was just curious as to the average dosage people take and whether 60mg a day seems a lot, especially as it is only 5 days a month that doesn't give me a chance to get used to the side-effects before its time to stop taking it again. It makes me very slow, slurry, sleepy and glassy eyed looking and I really struggle at university during those 5 days with focusing.

I wish your daughter lots of luck, especially as a little 3 year old. Thank you for your response.

Amy xx
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  #40  
Old 08-17-2013, 01:11 PM
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I've been taking Onfi (clobazam) as an add-on for a while. The only problem I noticed was that I would occasionally drool a bit. It was embarrassing, but not terrible, and it soon resolved itself. It's one of those things I have to laugh at now.

I do notice a difference when I miss taking it. Without it, I notice some vague emotional issues clear up and I seem to have a little more motivation to do things.

I take 10mg a day. I take a lower dosage because I'm also taking other medications and because I'm taking the Onfi with the intention of preventing seizures rather than stopping them as they're occurring.
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