Clobazam (benzodiazepines) and withdrawal

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Linds, I hope the withdrawal goes smoothly. Definitely agree with the others that say go as "low and slow" as possible. Keep track of how you feel, and check in with your doc if you want to slow the taper even more.

One tapering system that has been found to help with benzo withdrawal is called the Ashton Protocol. It involves adding a short-acting benzo such as valium at certain points during the taper to mitigate withdrawal issues. It's a bit complicated (and given your lower dose/duration it may be less relevant), but you can read more about it here: http://www.benzo.org.uk/manual/
 
Thanks Jen, Belinda and Nak--the only issues I am having are around sleep--I dont get into a deep sleep, have anxiety dreams, restless legs and mild myoclonics. During the day I'm fine mostly. I'm hoping this gets better and my plan now is to wait until it does before I do another drop. The valium substitution is an idea--if I can avoid adding another benzo first though I definitely will. I'm on day 8--I read somewhere days 7-9 are usually the hardest so maybe it will get better soon, and maybe the next drops will be even easier since the base mgs. I will be dropping from will be lower. I'm definitely not getting all the other symptoms people write about, but then I haven't discontinued completely either (but I also don't expect to, not like I'm on 4 mgs). Thanks for your guidance.(Jen--what was the med yours was substituted for--was it another benzo?)
 
Looking at the ingredients, it has valerian, melatonin and taurine, all ingredients other people who have come off of benzos have recommended for sleep issues. THANKS!!
 
lindsayschu2 said:
(Jen--what was the med yours was substituted for--was it another benzo?)
Click to expand...

Yes - clobazam. I failed to mention that didn't I?! Sorry. This was early on when my seizures first started, but I couldn't stay on it either because both caused severe urine retention issues. From there it was onto lamictal, and then the medication trial process continued from there.
 
I cold-turkeyed Klonopin 10 years ago...I'd been on a pretty good dose for about a decade or so prior (1mg in the morning and 1 or 2mgs before bedtime - I forget which). Not much of a taper either...I did it f-a-s-t. I was so ticked that a doctor was trying to force me into counseling to obtain it and that 'drug addict' (not 'drug tolerance' or 'drug dependence') was notated in my records that I wanted off of it.

I was a complete mess...EXTREME anxiety, insomnia (4 hours max sleep per night), agitation...

Turns out it was masking a seizure disorder though, so that might explain it. My anxiety was seizure-induced, which is why I still believe I'm having them.
 
Thanks guys! Even at a slow taper, it seems like going off a benzo isn't like going off the other meds I've tapered. The only real problem is no deep sleep and more myoclonics, and after 10 days at least the myos are getting better, but the sleep part is really annoying. This should be fun--I have three more of these 12.5 mg reductions to go :-) Going to try Super Snooze! I cannot imagine going cold turkey, even these small increments have increased seizures to some degree, though not massively. Elizzza I know how you feel--I was going to finish my taper of Topamax before stopping clonazepam, but the last time I tried to get the script for clonazepam filled, the office was 3 days delayed in responding, and I called the pharmacists several times to find out if they had replied since i was completely out of the med, and as a consequence, I was "Flagged" as a drug seeker as well--so I decided to quit now. I'm no drug addict and won't be treated like one!!
 
The supersnooze sounds like a good way to help with the night time myos. If you can sleep deep enough, maybe they wont wake you..

That 'flagging' is similar to over here in the UK. It happened to me at my local pharmacy, checking up to see if a new script for morphine sulphate had gone through, a week after my thoracotomy procedure for pneumonia.

I could kind of understand it though- just wished they were more 'together' so it was issued on time :/
 
I can understand it too I suppose--I sounded pretty intense that I needed it filled--I was running two global employee meetings the day I ran out cold turkey for 10,000 employees, for two C-level executives, with a live audience--very visible situation for me as I was running around managing the live event, and super high stress, after 3 days of similar meetings (we just closed an acquisition). Myos at night are one thing but I couldn't afford to have a complex partial or worse in front of execs and an audience and making me go cold turkey was begging for it, so yes I was very frustrated about the delays. I explained the situation but didn't matter, I was flagged. I had auras off and on all day, but thankfully no worse!
 
I was taken off of clonazepam (1.5 mg) pretty quickly about a month ago. I had myclonic jerks before going on it, and still had them quite frequently while on it. I reported this to my current neurologist, and he decided that it would be in my best interest to start taking it again, but at a lower dose (.5 mg).

I honestly don't feel comfortable being a "lab rat" and never saw a change, so needless to say I haven't filled that prescription.
 
I wish I had never started--I find it super helpful when I'm having more serious myoclonic seizures, but wish I had never had to take it daily--I now want to be on as few meds as possible, especially highly addictive ones! Were you on it long? Was it difficult to come off it? Thanks Skyfire
 
I was on it for about six months or so. Coming off it was pretty difficult though... Had some withdrawal symptoms for a little bit (paranoia and insomnia were the biggest ones), but was able to push through it!

To be perfectly honest, I feel better without it. Yes, the jerks are a little more frequent, but I'd rather have what I like to call the "Riverdance legs" than deal with a highly addictive drug that really messed me up mentally.
 
Well I honestly don't see how taking .5 a night will help you anyway. You eventually become addicted and immune to the effects of any dosage level of this drug anyway and the only way to continue to get benefits is to increase, which is what makes this drug so bad. I just don't think it should be used as any kind of maintenance med since it changes your GABA receptors, which can be permanent with really long term use. Even my dr never saw this as a long term thing, I just got stuck on it longer than anticipated due to circumstances. I'm with you, I'd rather try to control my myos with a regular maintenance med.
 
Clobazam/Onfi/Frisium - side effects wear off?

Hello Everyone,

A quick summary - though I did introduce myself. Diagnosed with epilepsy at 16 and I'm now 32. I only get them while sleeping. My seizures haven't been controlled for years. A few seizures every 2-3 months. Recently this past year I my tonic-clonic seizures are more frequent than my complex partial which wasn't the case before.

I'm on 450mg of Lamictal at night before going to bed. I quite like the medication as I have pretty much zero side effects.

BUT my doc decided to add an additional medication. A benzodiazepine - Clobazam (also refered to as Onfi and Frisium) - 10mg. I've only been on it 10 days. I'm feeling pretty tired. I'm usually a person who has a lot of energy and sleep 6-8 hours per night and I can function fine. I seem to have more energy than some of my friends who don't take meds.

Anyway......I'm feeling tired, which IS UNDERSTANDABLE, considering the side effects of benzos. But I'm not a fan of this unusual feeling!! I was wondering if anyone has been or is on this med and what their experiences are.

Did sleepiness wear off? If so, how long? (months, weeks, never?)
What were some side effects that you had?
Do you find you are still tired after being on it for years?

Thanks everyone and Happy New Year!
 
I took Onfi and it increased my seizures.I'm refractory and it's hard to get my seizures controlled.I've had epilepsy since I was two I'm now 53 and I'm refractory.

I also have Complex partial sz's and now I'm actually controlled some.
The side effects go away at different rrates for every one.

I take Topamax,Tegretol,Phenobarb and a lot of other meds.


The sleepiness lessens with some people, it depend on how you tolerate the meds.

Belinda
 
My daughter is on Onfi. At 20mg/day she didn't really feel any side effects, but when her dosage was increased to 30 and then 40mg/day (within one week) she felt really exhausted. The worst of it wore off after about 10 days, so give it a bit more time. I do have a friend whose son could not tolerate Onfi even at low dosages (she said he was like a zombie on that med), so if it doesn't get better it may not work for you to stay on it.

Best of luck!
 
The side effects wear off, and that's usually the point where you are developing physical dependence. You may want to research into benzos and fully understand these drugs, their long term use effects, and the process of getting off them to be sure you are comfortable being on them and for how long. I'm in the process of getting off one and discontinuation isn't fun at all, but I'd rather that than be on it long-term. Sometimes they are the best option, but fully understanding these drugs isn't a bad idea.
 
iv had seizures since from 14 and pretty much have had side effects for like forever.....sleepyness, morning sickness and reduced ability to focus..... so its not been fun, but then theres the positive side of things...it does give you more control of your seizers! but the side effects never....ever disapear! sorry!
 
Hi Everyone!

I thought I would update you on my experience on Clobozam. I've been on it for 4 weeks. So far so good. I don't feel overly tired. I take it 1 hour before bed (10mg), and I do notice that I fall asleep much much easier! I look at this as a plus!! ;)

I haven't noticed a difference in my energy levels through out the day. I always have sleepy periods of course and there are times I'm tired and feel like I could nap, but so do many of my friends who aren't on medications. (Or maybe I've just gotten use to pushing through it.)

So far no seizures (that I know of). And so far, no side effects that I've noticed.

yiippeee. I'll keep you all posted.
 
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