Coping With Epilepsy Matthew's Friends
Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen



Reply
 
LinkBack Thread Tools
  #1  
Old 08-16-2010, 02:16 PM
Joined the Party
 
Join Date: Aug 2007
Location: Up-State South Carolina
Posts: 44
Thanks: 2
Thanked 1 Time in 1 Post
Send a message via Yahoo to Duke

Clobazam (benzodiazepines) and withdrawal


my dr. myself and my wife all agreed to try the eeg video monitoring again after i had a partial right temporal resection 5 yrs. ago.
I'm taking Zonrgran 200mg/morn, 400mg/bedtime
Lyrica 150mg 2 x a day
Vimpat 200mg 2 x a day Vimpat is the drug my dr. has decided to trade for the Clobazam. I'll go in the hospital Sept. 1......at Duke University, where I had my resection done.
Before I was having 6 to 8 seizures a month. From July 1 Til' now I'v had 23. Mine are complex - partial and simple partial that cluster and last as long as 30 to 40 min.s.
Back to the Clobazam, I start it as soon as I come home from the hospital ( 5 to 7 days ) Any side effects I should be looking for, all I know about this med is that it"s not fda approved in the US and it comes from Canada. My dr. wants to try this because I've tried everything else.
Thanks for any help,
Duke

Last edited by Dutch mom; 03-05-2016 at 01:38 PM. Reason: changed thread subject because of merging several threads about same topic together
Reply With Quote
  #2  
Old 08-16-2010, 02:32 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts
Oh yes, my son was on clobazam for over 3 years, he used it in about 6 different combinations of two anti-epileptic drugs (f.i. Toparimate, Ethosuximide, Valporate, Lamotrigine, Levetiracetam, Phenobarbital and Felbamate.)

Clobazam seemed like a wonder medicine for about 3-4 weeks, then the seizures returned and we had to increase the dose. This happened again and again. When he was on a maximum dose and still was suffering from many seizures again, we tried to wean it off. It appeared to be a rather addictive med. Lowering the dose caused serious withdrawl effects and increased his seizures. Not one of all other meds was as difficult to wean off as clobazam was. We managed to wean 10 mg Clobazam off with 0.5 mg per 3 weeks and still we saw seizures breaking through the ketogenic diet (he was about 1 year allmost seizure free on the diet by then) for 2-3 days each time we lowered the dose with just 0.5 mg.

Clobazam is one of the benzodiazepines, which can definitly be very effective in stopping seizures. But usually only in a transient way unless the dose keeps on being increased as tolerance to the drug occurs. For that reason, in my opinion they are best kept as emergency meds for prolonged seizures.

The benzos act as a 'top up' to the GABA in the brain, a neurologist inhibitory chemical, meaning everything is 'subdued' when the GABA level is increased, including seizure activity. But the tolerance aspect comes about when a compensatory mechanism starts occurring, that is - due to the regular artifical top up, the body starts producing less natural GABA, meaning the overall level drops down, requiring another med increase to keep the status quo, the natural GABA production 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 benzodiazepine meds can become less effective in a one off 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.

Personally, I'd try and stay away from any of them as regular anti-epileptic drugs, as once one is addicted to them, it can be a long hard process withdrawing them off again.

Yes, the weans can be awful - which is also obviously tied into the GABA levels. As you reduce the dose, the GABA levels drop down below what they were previously, and so the brain is in a neurologist excitory state, and so the seizure threshold is lowered until the natural GABA production kicks back in once the brain realises it has a shortfall. That is when they (hopefully!) stabilise, and then you do the next reduction, go through it all again, and so on.

We had 3 1/2 yrs of the see-saw adding/reducing/weaning benzo process with our son and the comment from one of the Fleetwood Mac members "benzodiazepines are harder to withdraw off than heroin" used tor ring in my ears throughout the process.

Clobazam can be very effective but... better not increase the dose again and again in case tolerance occurs!

Here http://www.benzo.org.uk/manual/bzcha03.htm (several chapters) you can find a lot of information about the benzodiazepines and how they work in the brain, including the side effects and how to withdraw.
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 08-16-2010 at 05:42 PM. Reason: added link
Reply With Quote
The Following 5 Users Say Thank You to Dutch mom For This Useful Post:
Alanna (03-17-2016), Blondie47 (01-11-2012), Duke (08-16-2010), Jdb (04-12-2018), sandi (08-20-2010)
  #3  
Old 08-16-2010, 03:44 PM
Joined the Party
 
Join Date: Aug 2007
Location: Up-State South Carolina
Posts: 44
Thanks: 2
Thanked 1 Time in 1 Post
Send a message via Yahoo to Duke
Dutch mom,
thank you for all the information. This gives me a good head start as far as information goes. Thanks again,
Duke
Reply With Quote
  #4  
Old 08-18-2010, 12:52 PM
vixster's Avatar
New Here
 
Join Date: Aug 2010
Location: Midlands
Posts: 1
Thanks: 0
Thanked 0 Times in 0 Posts
just been prescribed it - but only for the 3 days a month that I usually have siezures - will let you know how I get on with it
Reply With Quote
  #5  
Old 08-19-2010, 10:43 AM
Weaving the Community Fabric
 
Join Date: Jun 2010
Posts: 224
Thanks: 18
Thanked 29 Times in 25 Posts

Thanks


Thanks Dutchmom that's one of the easiest explanations of benzo and brain activity I've read.
I use low dose benzo med as I'm not on E meds. So I worry about the addictive
nature.
Funny we never worry about increasing dilatin or other meds- of course some are addictive as well..
I's hard to believe that they can't design a good Benzo, that lasts long and isn't addictive.They Know it works and without side effects that are too bothersome.
Reply With Quote
  #6  
Old 08-19-2010, 11:23 AM
Rae1889's Avatar
Venerable Voice of CWE
Recent Blog: Update
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba, Canada (a.k.a The Land Of Endless Snow!)
Posts: 2,650
Thanks: 705
Thanked 471 Times in 319 Posts
Send a message via MSN to Rae1889 Send a message via Yahoo to Rae1889 Send a message via Skype™ to Rae1889
Clobazam is one of the benzodiazepines

it is prescribed in canada under great restrictions and care as it is used as a "date rape" type drug here. and can overdose easily on it.
__________________
FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
Reply With Quote
  #7  
Old 08-20-2010, 09:24 AM
Weaving the Community Fabric
 
Join Date: Jun 2010
Posts: 224
Thanks: 18
Thanked 29 Times in 25 Posts
I believe it was called frisium , when I looked it up. Didn't know about the Date Rape part.
The Benzo are pretty sought after in US as well. They are so highly regulated
Dr's have quota's here only allowed to prescribed.If the write to many RX's they get audited.
Ritalins the same way as well.
Reply With Quote
  #8  
Old 02-16-2012, 11:20 PM
New Here
 
Join Date: Feb 2012
Posts: 5
Thanks: 9
Thanked 0 Times in 0 Posts

ONFI - has anyone tried this "new" medicine?


I saw my neurologist today, and he is having me try Onfi, along with my regularly prescribed Lamotrigine. He said Onfi has had excellent success in stopping seizures, but you could only buy it in Canada or Mexico. Even though it's been around for 41 years, the FDA has just ok'd it. It's so "new" it wasn't in the pharmacy's database.

You could say that about me. I just joined the forum today....can't believe CWE has escaped my attention all these years. I am enjoying reading all the great posts and topics. This site is awesome.

I hadn't seen anything on Onfi, but this is a good excuse to say "hello" and ask about this new/old drug.
Reply With Quote
  #9  
Old 02-17-2012, 12:13 AM
epileric's Avatar
Super Moderator / Spaminator
 
Join Date: Dec 2007
Posts: 4,500
Thanks: 406
Thanked 1,308 Times in 939 Posts

Welcome to CWE


Actually I was recently put on onfi (called Clobozam in Canada).

I like it because the side-effects are minmal, It made it harder for me to get out of bed though.

I felt as though I might be a bit more forgetful but I've always been forgetful so I'm not sure if I'm just using the drug as a scapegoat.

I didn't like it because it really didn't do much for my seizures. They stopped for a week but then came right back just as bad as they were before.

Here's what Wikipedia had to say about it. It also gives you the other names it goes by so you can use the search option on this site (at the top of the page) for those names too.

http://en.wikipedia.org/wiki/Clobazam
__________________
"It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason

Last edited by epileric; 02-17-2012 at 12:44 AM.
Reply With Quote
The Following 2 Users Say Thank You to epileric For This Useful Post:
Alberta (03-06-2016), Scenie (02-17-2012)
  #10  
Old 02-17-2012, 04:39 AM
Weaving the Community Fabric
 
Join Date: Apr 2010
Location: orlando FL
Posts: 237
Thanks: 8
Thanked 71 Times in 57 Posts
so glad you posted this... something to think about neurologist is thinking about putting me on this as an adjunct for a 2-4 week once a month since my T/C seizures tend to flare up around my period. Not liking the fact that it can become highly addictive and can have some wicked withdrawl effects looks like but if it works..... but do you feel the withdrawl effects I wonder if you are on it only on it 2 weeks of the month on such a low dose? I am sure you do to some effect any one on it? please reply!
Reply With Quote
The Following User Says Thank You to tinathesingergirl For This Useful Post:
Scenie (02-17-2012)
  #11  
Old 02-17-2012, 12:01 PM
New Here
 
Join Date: Feb 2012
Posts: 5
Thanks: 9
Thanked 0 Times in 0 Posts
Hi! thanks for your quick responses. @epileric - If you don't mind my asking, if it doesn't do much for seizures, why do they have you on it? @tinathesingergirl - I don't pick up the prescription ti this afternoon, so I haven't tried Onfi yet, and since reading your post, I'm questioning if I should. I was on phenobarbital forever, and now I'm on another barbituate? This would be a small dose taken at bedtime, to be increased to twice a day after a month. But still. Any information is much appreciated.
Reply With Quote
  #12  
Old 02-17-2012, 12:04 PM
epileric's Avatar
Super Moderator / Spaminator
 
Join Date: Dec 2007
Posts: 4,500
Thanks: 406
Thanked 1,308 Times in 939 Posts
How well it works on seizures depends on the person. Every anti-epileptic drug effects everyone differently & that rule applies to side-effects as well as how well it works.

We had no clue how well it would control my seizures until I tried it.

I"m now trying to taper off of it.
__________________
"It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason
Reply With Quote
The Following User Says Thank You to epileric For This Useful Post:
Scenie (02-18-2012)
  #13  
Old 02-17-2012, 04:25 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts
Welcome Scenie,

Clobazam is not a specific anti-epileptic drug, it is one of the benzodiazepines and is used as an add on to anti-epileptic drugs. And it is no 'new' med for epilepsy either. Clobazam is used for epilepsy and other conditions in many countries. My son used clobazam 9 years ago untill six years ago. It is a controversial med because of the addictive effect, there are several countries in which clobazan is not an approved drug.

Our experience with clobazam quoted from another thread I replied on in the past:

Quote :
My son was on clobazam (brand name Frisium in The Netherlands) for over 3 years, he used it in about 6 different combinations of two anti-epileptic drugs (f.i. Toparimate, Ethosuximide, Valporate, Lamotrigine, Levetiracetam, Phenobarbital and Felbamate.)

Clobazam seemed like a wonder medicine for about 3-4 weeks, then the seizures returned and we had to increase the dose. This happened again and again. When he was on a maximum dose and still was suffering from many seizures again, we tried to wean it off. It appeared to be a rather addictive med. Lowering the dose caused serious withdrawl effects and increased his seizures. Not one of all other meds was as difficult to wean off as clobazam was. We managed to wean 10 mg Clobazam off with 0.5 mg per 3 weeks and still we saw seizures breaking through the ketogenic diet (he was about 1 year allmost seizure free on the diet by then) for 2-3 days each time we lowered the dose with just 0.5 mg.

Clobazam is one of the benzodiazepines, which can definitly be very effective in stopping seizures. But usually only in a transient way unless the dose keeps on being increased as tolerance to the drug occurs. For that reason, in my opinion they are best kept as emergency meds for prolonged seizures.

The benzos act as a 'top up' to the GABA in the brain, a neurologist inhibitory chemical, meaning everything is 'subdued' when the GABA level is increased, including seizure activity. But the tolerance aspect comes about when a compensatory mechanism starts occurring, that is - due to the regular artifical top up, the body starts producing less natural GABA, meaning the overall level drops down, requiring another med increase to keep the status quo, the natural GABA production 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 benzodiazepine meds can become less effective in a one off 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.

Personally, I'd try and stay away from any of them as regular anti-epileptic drugs, as once one is addicted to them, it can be a long hard process withdrawing them off again.

Yes, the weans can be awful - which is also obviously tied into the GABA levels. As you reduce the dose, the GABA levels drop down below what they were previously, and so the brain is in a neurologist excitory state, and so the seizure threshold is lowered until the natural GABA production kicks back in once the brain realises it has a shortfall. That is when they (hopefully!) stabilise, and then you do the next reduction, go through it all again, and so on.

We had 3 1/2 yrs of the see-saw adding/reducing/weaning benzo process with our son and the comment from one of the Fleetwood Mac members "benzodiazepines are harder to withdraw off than heroin" used tor ring in my ears throughout the process.

Clobazam can be very effective but... better not increase the dose again and again in case tolerance occurs!

Here http://www.benzo.org.uk/manual/bzcha01.htm (severalchapters) you can find a lot of information about the benzodiazepines and how they work in the brain, including the side effects and how to withdraw
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 02-17-2012 at 04:34 PM.
Reply With Quote
The Following User Says Thank You to Dutch mom For This Useful Post:
Scenie (02-18-2012)
  #14  
Old 02-17-2012, 04:59 PM
Weaving the Community Fabric
 
Join Date: Apr 2010
Location: orlando FL
Posts: 237
Thanks: 8
Thanked 71 Times in 57 Posts
yeah really afraid of this drug....the way he wants to use it with me there just has to be another way i am thinking.... not liking being off of it for 2 weeks and then on it for 2 weeks? this sounds kind of crazy to me maybe another drug is the answer?
Reply With Quote
  #15  
Old 02-17-2012, 05:03 PM
Weaving the Community Fabric
 
Join Date: Apr 2010
Location: orlando FL
Posts: 237
Thanks: 8
Thanked 71 Times in 57 Posts
I am also thinking how in the world am I gonna be able to work while on this med? I am thinking transitioning on and off all of the time is not gonna be a fun thing.... thanks Dutch mom for all the info Tina
Reply With Quote
  #16  
Old 02-17-2012, 05:54 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts
@Tina, as far as I know a 2 weeks on and two weeks off therapy with clobazam is used in particular for women with catamenial epilepsy (period related seizures.) This can be an efective way to control this type off epilepsy without the tolerance and the addictive effect.
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 02-17-2012 at 05:58 PM.
Reply With Quote
  #17  
Old 02-18-2012, 04:11 AM
New Here
 
Join Date: Feb 2012
Posts: 5
Thanks: 9
Thanked 0 Times in 0 Posts
Thank you all so much for your insights. This is really a great place to hang out :-)

I have so much confusion as to why the doctor is adding on to the Lamictal, which works really great. He wanted to add Depakote, but my chart has me listed as allergic, so they wouldn't fill the prescription, thus the "Onfi."

What does clobazam do? How does it help? The addictive qualities sound like opiates. Increase dose when the seizures return...why do they return? I'd like to feel more comfortable about it before swallowing the first pill...maybe tomorrow. Maybe never.

Sometimes I feel like his favorite guinea pig. Here, let's try Keppra, no let's try Depakote.....
Reply With Quote
  #18  
Old 02-18-2012, 06:35 AM
Weaving the Community Fabric
 
Join Date: Apr 2010
Location: orlando FL
Posts: 237
Thanks: 8
Thanked 71 Times in 57 Posts
Thanks for the info DutchMom! I was beginning to get freaked out about all of the info again not to sure about the all of the meds they just increased on the topamax about 2 weeks ago since i had 3 T/C's on the same day very unusual for me. Had to be hospitalized. Usually I only have 1 T/C and sleep for a few hours and am fine after that. I can go months without having any at all my meds keep me pretty well controlled but things have been pretty stressfull at work lately there have been some changes with some policies and I am wondering how they are going to affect my status. Also there are some people at work that are not very easy to work with and then you end up looking like one of the bad guys. I try my best, keep a good attitude,work hard and try to keep a smile on my face the best I can. Sometimes thats all you can do : ) So that was very helpful info you just gave me about the med I see him on the 8th and we will discuss in the meantime we will see if the 200 mgs of the topamax will hold and the 1500 mgs of Keppra will hold out during my next period this last week of this month/first of next.....and for not too much stress to affect me.

tina
Reply With Quote
  #19  
Old 03-10-2012, 12:39 AM
Venerable Voice of CWE
 
Join Date: Dec 2007
Location: PA.
Posts: 1,601
Thanks: 266
Thanked 149 Times in 122 Posts
If GABA is in an excitory state from this medication's withdrawal, it sounds like all stimulants are off limits.
Anemia is pretty common across numerous members in here. I take an iron supplement, but that'd be something to also ask your neurologist. I suppose the liver takes a beating for some of us.
Mysoline slowly releases phenobarbital into one's system. I'm wondering if that is a better choice.
__________________
__________________________________________
WARNING: Humor may be hazardous to your illness.
-Ellie Katz
Reply With Quote
The Following User Says Thank You to alivenwell For This Useful Post:
Alberta (03-06-2016)
  #20  
Old 07-27-2013, 11:30 AM
QueenieKP's Avatar
Weaving the Community Fabric
 
Join Date: Jul 2013
Location: London, UK
Posts: 358
Thanks: 30
Thanked 127 Times in 99 Posts

Clobazam, could it increase complex partial?


Since I have been on my temporary emergency fixer upper med regime of Clobozam 10 mg twice a day. It's totally knocked the myclonic seizures into touch.

But Tuesday after an amazing lack of sleep and going into a staff meeting when I usually take my morning nap (or as I prefer to term it horizontal life pause). I had a doozy of a complex partial lasting about 45 seconds. Now haven't had a complex partial since being diagnosed with juvenile myoclonic epilepsy this time round at 36 and this is the first one on this medication?

Any thoughts? I had been on Clobozam for 13 days and am trying to run around getting my life back to its usual hectic little schedule. I am tired all the time but also isominical.

I am not sure if I am having partials more often than i think but just unaware as they're not as obvious as a tonic clonic or I am not concious like with a myclonic.

So just throwing it out there for opinion would you suspect the drug could it be causing the partials or could some of my 'old' seizure activities be triggered by the lack of sleep heat triggers?

Also proper moody bint. I know it's only 2 more weeks of benzos and then new med a go round but they're stupid and should have rocks thrown at them. I swear I have had more accidental injuries on these than anything else.

On plus side have a referral to specialist epilepsy nurse whol will hopefully be able to talk about meds and side effects beacuae I don't know if my expectations are realistic. When I change a mef I take a week of work and then expect to be able to cope because I have taken a week off work.

I was so tired on zonismide but not too down I under gp came off anti depressants mirtazipine hoping I would have a little more pep. But my 'irrational thought' when they tried increasing my zonismide makes me worry about have a mental health crisis and I just scared about anti-epileptic drug's and Anti D's.

But my crisis triggers are lack of sleep. Clobazam
Was great for first 5 days cos I was sleeping 16-18 hours a day and not caring if I worked or was a productive member of society.

I think I have mixed the post it's a bit kitchen and padded room.

Q
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
New medicine ( ONFI ) Athena22 The Kitchen 4 06-21-2014 10:48 AM
neuro messing with Onfi Belinda5000 The Kitchen 4 04-05-2014 10:22 PM
Onfi AndrewIrish The Kitchen 3 07-04-2013 08:49 AM


All times are GMT -5. The time now is 07:50 AM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.