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  #41  
Old 08-17-2013, 03:38 PM
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I was put straight onto 20 mg (split into 2 10 mg doses am and pm). After an adverse reaction when increasing zonismide.

For the first 5 days it knocked me out, I slept 16-18 hours a day. Then I had trouble sleeping, weakness, confusion (but was a bit crazy from the zonismide so could have been 6 of one and half a dozen of the other). Was generally quite drowsy.

After a month the dose was halved and I did experience some withdrawal seizures and gp said taper may have been a bit too much too soon. Will be on the last 10 mg at night for another 3 months until I am back to see the neurologist.

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  #42  
Old 08-19-2013, 01:37 AM
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Diazepam is something I take as a add on, I guess. I know it helps reduce my seizures, but it lost potency quite awhile ago. From what I gather from all the Docs and neuros I talked with the human body can go really high on these meds. The dosage I took on Klonopin was far higher then what I take now in the Diazepam. Benzos are really odd drugs.

I know my "aura" feeling just vanishes if I increase my Diazepam. I actually think more clearly, which contradicts the nature of the med. Pills, ugh!
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  #43  
Old 08-19-2013, 03:53 PM
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There's another issue. It's what a previous hospital-stay roommate called the "honeymoon period." It's a period of time when the medicine works while the body gradually adjusts to it. So while you're adjusting to side effects, you could also be adjusting to the intended effects and soon need a higher dose. That's a bummer. :\

Ideally, I think we find a med combo/dosage that works well which has the most tolerable side effects. The drugs have different chemical structures, so permit me a goofy analogy. I think comparing dosages of one to the other might be like comparing salt and sugar in a recipe. They look similar, but you obviously need more of one than the other to bake a cake. :P

ETA: I'm taking 10mg of Onfi, for example. But I'm also taking .5mg of Klonopin and 1mg of Ativan. Same class of drug, I believe, but 10mg of either of those would probably kill me.

Last edited by dejavudu; 08-19-2013 at 03:55 PM. Reason: ETA
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  #44  
Old 08-19-2013, 04:16 PM
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I'm Clonazepam 0.5mg which = 10mg of Diazepam. I've been on the meds for over a year. Apparently one should be on it for 4wks or less.
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  #45  
Old 10-05-2013, 02:01 PM
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Angry onfi side effects


I have been on onfi since it came out . I went in the hospital to go off keppra because they thought that was effecting my depression and anxiety . I had to go back on but that had nothing to do with it . At the time they put me on 15 mg. of onfi morning and night . I was so confused I could not function . my brain was going haywire . Now I am on 10mg. m@n . of onfi . I have horrible anger in me .I hate everybody . I am depressed and have anxiety . I feel like my mother is going to have a heartattack because of what I am putting her through . If it wasn't for my parents and brothers family I would kill myself . Has this happened to anybody else ?
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  #46  
Old 10-05-2013, 02:38 PM
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Usually Onfi is used for patients with Lennox-Gastaut syndrome, a severe form of childhood epilepsy. It is a benzo, so it can be addictive long term. Plus you need to contact your dr. ASAP if you continue feeling suicidal as this IS a side effect from Onfi.

Many of the anti-epileptic drug's can make depression worse for some of us. I've not taken Onfi, but I have suffered from depression and suicidal ideation from some of the meds. These are powerful drugs, so call the dr. today!!
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  #47  
Old 10-06-2013, 01:12 AM
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I know Onfi (clobazam) is being used more and more for things other than Lennox-Gastaut Syndrome, but i haven't heard of anyone i know that is on it experiencing that particular side effect. I agree with Cint though, if you are feeling suicidal, you need to contact your doctor and let them know right away because most of the anti-epileptic drug's (including Onfi) have that as a possible side effect. i hope they get it figured out fast for you Jenn!
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  #48  
Old 05-18-2014, 03:13 PM
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Frissium/ Clobozam brand name vs Generics


Hi there,

Ive been on Tegretol/Carbamezopeine and Clobazam generic brand forever.
In 2012-13 I was switched from Teva (Novo) Clobozam to Apo-Clobazam and my seizure frequency increased dramatically, and in autumn of 2013, I switched back to Teva Clobozam and seizures have been under control.

They switched me to Apo in the first place because Teva (Novo) was on back order a lot of the time. Now again, they are on back order but this time, instead of Apo, they decided to put me on the brand name Frissium.

Im sure just like all of you, I'm hesitant to change something, especially something as important as drugs that control our seizures. Im curious if anyone has experienced the switch from generic Clobazam to brand name Frissium.

Im assuming that if its brand name, it should be just as effective, but any change , even if its the supplier, I'm a bit hesitant.

I would appreciate if anyone could comment or give any first hand experience.

Thanks so much for the always continual support
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  #49  
Old 11-11-2014, 11:38 AM
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Tapering off Benzos??


Has anyone had experience with tapering off clonazepam or other benzos? I ended up on one at .5 a day (against my preference, but dr. felt it was needed to control myoclonic seizures during a long electrolyte imbalance period vs increasing my base meds). I've now been on .5 daily for 4-5 months and want off it. I started a 25% taper every two weeks--I'm on day 7 of my first reduction, and overall doing Ok, but having nighttime myoclonus despite having increased Keppra to 2500 mgs a week ago. These are just leg jerks that wake me from sleep, not the full-on myoclonic seizures that I get that are much more worrisome. There are tons of horror stories out there about coming off of clonazepam and I'm hoping that at this relatively low(ish) dose for only 4-5 months vs years, maybe these horror stories won't apply to me and I just need to tough out a few nights of myos at each taper. Any stories of experience appreciated as the stories out there never seem to apply to epilepsy patients at normal doses, mostly anxiety patients at much higher doses for longer periods of time.
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Old 11-11-2014, 11:39 AM
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And yes, I talked to the drs. office about it Friday, and as always, they said I could do an even faster taper--but the office also said I could go off Topamax at 50 mgs a week until I started having serious seizures, where they said I shouldn't reduce faster than 25 mg every two weeks. They never get what med reductions actually do to us so I am asking you all, thanks :-) I am not taking their advice and tapering faster as I still am not particularly stable.
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  #51  
Old 11-11-2014, 12:25 PM
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Good

Surely a faster taper would lead to worse effects? I really don't understand the logic of that. Anyway, you at least understand they have no idea of the effects of these adjustment periods.

I have to say I've no personal experience of it, and the only 2 friends I've watched come off it were hi-dose anxiety sufferers. They 'helped' themselves by smoking large amounts of hash (which I'm not sure was that beneficial at all tbh).

For E treatment though, I guess the only thing I can advise, is to try lower the taper amount with a razor if possible, and increase the time length. Hopefully that will make things a little bit 'smoother', but you'll probably still experience some of those twitches.

If that's not possible, then increase the time anyway, and you'll just have to put up with them

I realise that's not particularly helpful, but hopefully someone else will have a miracle for you I can't think of..

Last edited by SlimBlue; 11-11-2014 at 12:29 PM. Reason: sepling
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  #52  
Old 11-11-2014, 12:35 PM
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Thanks Slim--I'm wondering if the withdrawals are all the hell everyone is making it out to be, for everyone. I'm going to go as slowly as I need to--from reading, people make it seem like you will suffer the bowels of Hell no matter what your dose, if you were on it more than two months or how slowly you go.
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  #53  
Old 11-11-2014, 12:55 PM
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Like you said, that info is mostly from high-dose anxiety sufferers, and does seem a bit OTT considering you've only been on .5 for less than 6 months. If you've been going ok for the first week, regarding mood stability, chances are things shouldn't be too bad.

If they think coming off benzos is hard, they should try heroin. (I'm not discounting the fact that benzo addiction is incredibly hard to break- it's just, as you said, all the info seems to be for very hi-dose/long term dependencies).

I'm trying to think of a natural sedative other than low-strength hash or better just CBD oil, which would help with the night time jerks, but not interact with the Keppra etc. But I can't really lol and anyway, even if I could, I'd be loathe to recommend something like that on here.

Last edited by SlimBlue; 11-11-2014 at 01:08 PM. Reason: clarification
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  #54  
Old 11-11-2014, 01:46 PM
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I would also be really interested to hear from anyone who has gone through this. My daughter is currently on Onfi and it is not working to control her seizures (she is having daily partials, and had a tonic-clonic on Sunday). She started on 20mg/day at the end of June, and is now up to 50mg/day and we can't go any higher (not that I would want her to).

She'll be switching to lamictal after a video EEG next week, and then once she is on a therapeutic dose of the lamictal she'll be tapering off of the Onfi. She suffers from anxiety as well, and I am getting scared of the withdrawal process. Any experiences would be greatly appreciated.
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Old 11-11-2014, 01:57 PM
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Kgartner--I would say one thing I've learned from other 'weaning' periods on many other seizure meds is drs tend to tell you to wean much faster than is usually in your best interest. I've had to slow their suggested tapers down every time and things went better--I do think I'm already going faster than what I've read is the recommended 10% every 2 weeks that other users have said, but I have only been on it 5 months--we will have to see if it's too fast for me. I also have been dreading undertaking this process--but the last time I went to get it filled the drs office was 2 days in responding and I had to go a day and a half cold turkey and that was not a fun day. I'm done with this monkey.
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  #56  
Old 11-11-2014, 02:27 PM
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By the time we are weaning the Onfi it will be just 6 months for her, so I'm hoping that it won't be a horror show. It's just that she got up to such a high dose so quickly. I wish we'd abandoned it sooner, but I think her doctor wanted to push it so she was not considered refractory. Unfortunately, the more we go up, the less effective it seems to be - and now she's refractory anyway.

Believe me, we'll be taking it nice and slow. I can't wait to get off of it!
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  #57  
Old 11-11-2014, 02:32 PM
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I would also recommend a slow ramp/wean as is possible, with the smallest dose changes possible. This would be much slower than what will be suggested by the doctor.

Adjusting the dosage by tiny amounts, over a long period has the 'opposite' effect to sudden cold turkey- giving the body plenty of time to adjust, and reducing any side effects as much as possible, and as far as I know, is the most logical, 'easiest' way to come off anything.

The lamotrigine (a mood stabiliser as well as an anti-epileptic drug) will hopefully help your daughter a bit re staying calm while she comes off the clobazam/Onfi.

Lindsayschu2 - check out this link for some sound benzo tapering advice. After a quick scan, it pretty much reads the same as what we've been positing above..
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  #58  
Old 11-11-2014, 02:36 PM
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Yeah, I didn't want to go on clonazepam daily at all, but I was having myoclonus every day, many times a day, sometimes status, and since it was due to what was considered a temporary situation, they wanted me to be on a benzo. But the illness dragged on for 2 months--then when it was discovered it was Topamax making me ill, I had to go off THAT and couldn't go off a benzo simultaneously. At least I went from 1.5 a day to .5 pretty fast before that became the norm. I'm with you--every day that's ticked by I've been aware is one more day I'm on a drug that will be hard to get off of. We will do it though, and be the better to be off it!!!! Good Luck Kgartner, hopefully we will hear from some people who have done this on here.
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  #59  
Old 11-11-2014, 07:20 PM
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I was on 1.5 mg per day at one point (1 mg PM and 0.5 AM) and had no issues with tapering off. Just took the 0.5 AM away at the same time a new medication was started, then five days later over a 10 day period the PM dose was reduced to 0.5 and then zero while the new medication was gradually added in at night.
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Old 11-12-2014, 04:51 AM
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when I came off clonazepam it was a very slow process,I had been on it forlike 5 years most likely longer.I'd taken tranxene in the past and valium.
They all worked for my seizures with nothing else would work for hardly.
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