Clobazam (benzodiazepines) and withdrawal

Well, we decided not to have her take Klonopin or Onfi at the moment. She's had 4 medication changes in the past 9 months and her seizures have only increased during that time. I think it's time to take a break from trying new medications, so at her nurse appointment in two weeks we'd like to discuss putting her back on the Lamictal/Vimpat combination she was taking before any of the recent changes.

Good choice. It definitely sounds like you guys are doing the right thing!
Good luck, and feel free to ask any other questions. :)
I know I Shouldn’t but I cut yesterday the pill in two. bad idea... I had again seizures. Than I took the other half of the pill and everything stop. So I am at the good dose. Maybe I should ask my neurologist to reduce tegretol since I took 1.5 pills x 2 ?!
If the clobazam is a very recent addition, your neuro may recommend sticking at your current dose to see if the side effects lessen as you brain gets used to it. But if you've been at the full dose for several weeks or months now and you're finding the side effects troublesome, give your neuro a call to find out what the next step should be. Always a good idea to keep your neuro in the loop.
Large doses of Keppra and Frisium (clobazam)

Evening all,

My wife has had epilepsy since very young and over the last 6 years I've known her has had 1 seizure per year (give or take). She had been seizure free for 1 1/2 years on 1250mg Keppra twice daily up until the birth of our 2nd daughter.

The exhaustion caught up with her, along with feeling generally run down and she had a seizure 3 weeks after the birth. She went to the hospital (normally sleeps it off and is fine at home) where she had a further 3 seizures. Needless to say I was worried. I took time off work to help her recuperate but unfortunately she had yet another seizure 2 weeks later (though she stayed at home and slept it off).

Fast forward to seeing her specialist who now has her on 1500mg keppra twice daily (max dose) along with 20mg Frisium twice daily. Although she is managing to rest, she constantly feels tired and 'zombified', struggles to keep balance when up and walking and says that every morning she wakes up it feels like she's been hit by a truck. In addition to sleeli g through the night, she is also having 2 naps during the day.

She has to be on these meds for 8 weeks before the specialist will start to decrease the doses... Does this sound normal? As it is, she would not be able to look after herself properly let alone two young children (4 years and 6 weeks). Luckily my work has been very understanding, but for how long I do not know.

Just worried that she may be on too higher a dose even though the specialist didn't seem too fussed?

Had the need to post this so I could get some opinions. Thankyou.

Sorry to hear you are having a rough time, I myself do not like keppra but from my own experience being tired so much, not able to keep balance and thinking a truck hit you, I think the keppra could be the problem but you do need to talk to your doctor and tell them what is happening and how she feels. She should not have to wait 8 weeks to let her doctor know this and if she does I would be looking for a second opinion.

Side effects are something we need to watch out for and you need to be able to talk to your doctor straight away.
Hi roscolabri and welcome,

Sorry to hear of your wife's predicament, but am happy to hear you're willing to help her now. I've had E now for over 30 years and like your wife, my seizures were well controlled until after the birth of our 2nd child. Hormones do play a role in women with epilepsy, so your wife does need to have her drs. check her hormone levels, especially after the birth of a child. And if your wife is not getting enough sleep, that can trigger more seizures also.

Here is a link about seizures after the baby is born:

I have refractory E, so I take 3000 mgs. of Keppra a day along with Topomax. I was initially very tired and felt like a "zombie" but eventually got used to it. All AEDs unfortunately can do that to an individual. Some are worse than others. Keppra is also known to cause "rage" and depression, just a word of caution.

I hope things get better for you and your wife. Oh, Congratulations on the birth of your child!!
I can't give you any advice on child birth and epilepsy but I'm sure with having a baby in the house can cause stress and she's tired because of all the things that need to be done to take care of the baby. Stress and being tired are two major seizure triggers for me. If these things are going on in my life I'm almost guaranteed to have a seizure.

I usually wait about two or three weeks to see if the side effects of my meds go away or start to subside to a point that I can deal with them. If they start to get worse or I can't deal with them then I let my neuro know. He will either change the dosage or take me off the med completely.

I am on Keppra and I get mad very easy. It's usually call it Kepprage. I will snap on someone for just the littlest or stupidest reason. I've even started yelling at people like crazy. Once when I was in the grocery store a little boy kept opening and shutting the freezer doors and causing them to fog up. I started screaming at his mom because I couldn't see in them to get what I wanted and told her to make him stop. She gave me the most evil look, grabbed her son and walked away.
It's also very possibly the clobazam that is making her so tired, and that in combination with Keppra. For a lot of people, the sleepiness of Keppra tends to reduce over time. But I'm glad they are reducing clobazam since that is generally something that is intended for short term use. Are they reducing Keppra as well?
Thanks for the replies so far.

I should have mentioned that the new symptoms of feeling very wobbly, super exhausted etc only started after the Frisium was introduced.

As for the Keppra, I think she'll give it a couple of weeks to see if her system adjusts and go from there, though I know she was keen to either reduce her Keppra gradually as she has felt a bit too drugged up since her last increase which was around 2011 (going from 1000mg twice daily to 1250mg) or change altogether after the baby was born due to the fact that she was seizure free for 7 years on Epilim (sp?) + a small dose of Lamictol (sp?) and only changed to start a family. It's a tough decision because the Keppra has been fine overall, with us being able to attribute the reason for the one-per-year seizure down to either illness to my wife or kids during the night, or silly late nights without thinking.

After what's happened this time around, we've certainly agreed that we won't even entertain the idea of a third!

Regarding the specialist, we felt a little let down when we saw him purely because he didn't really seem all that interested, which is different from usual. My wife mentioned the extra symptoms and that she needs to be able to look after the kids at some point but he just said they'll review it in 8 weeks time and gradually wean her off the Frisium (no mention of Keppra). In fairness to him, I suppose he just wants to stop the seizures and give her time to recover before even entertaining any changes.

I've heard about Keppra Rage before but don't think my wife has ever had it, though we have had a few heated discussions but I believe that's what married couples do :eek:

She did feel very down after our first baby, though this time around she was much better, though due to the current situation of her wanting to help but not really being able to, she just wants things back to normal.

Frustrating for me, but more so for my wife. We'll keep plodding on and hopefully see what happens day by day. Should just mention that our first kid, who is 4 years old, is an absolute star. Good as gold, and the whole process has been that much easier because of how she has conducted herself (seems silly when describing a 4 year old doesn't it?)
Side effect lessen with time. thanks for your help. I get better each day. I dont have sleep myoclonus anymore :)
Clobazam dont work anymore. I had ten seizures last night. I am afraid of sleeping tonight. I will have an appointement with my neurologist only monday.

The only good thing that happen to me is that i received an appointement for the epilepsy clinic of my town.
benzodiazepine (withdrawal)

I have two potential medications "on deck": Onfi and Vimpat.
I'm curious about Onfi. If it is a benzodiazepine, is it
nearly the same as the lorazepam I take as needed? I have heard that benzodiazepines only work for a certain period of time when taken daily, and you build up a tolerance within a couple months. I also read that big study last year where benzo use was correlated with dementia. I'm sure the Onfi would help with my anxiety and seizures for at least a short time, but at what cost? Just wondering how this compares to other AEDS and other benzos in terms of long term efficacy and side effects (including cognitive side effects). Insight on Vimpat would be helpful as well. Thanks!!
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I take cloberzam have done for years one every night and extra if I need it..I under no illusion I addicted to it but be honest I don't care I no cope coming off it...I had Mir scan few months ago and it showed brain scarring I don't know if connection but the colbazam I don't know if side effects apart from my memory but e may be cause..only others would say if I got dementia
Onfi I took that once and it increased my seizures.The doctor feeling in for my neuro wanted to put me more of it.Vimpat that I'm allergic to.

I'll put up with the seizures I'm having with Fycompa right now because I refuse to increase it because of side effects.
ONFI is not take as needed. It's take on regular schedule. My wife is currently on it. She experiences a noticeable lack of emotional control while on it (inappropriate rage). It (the side effect) was worse when she first started on it.
Onfi and Vimpat are the two medications that my daughter is on, so hopefully my comments will be helpful to you.

Onfi never worked well for her. I don't think that it was due to tolerance - it is just not a drug that was able to control her seizures well. She did start off at 20mg/day, and within a few months was up to 55mg/day (pretty much the maximum dose), but her seizures were only partially controlled. We also never really saw any impact on her anxiety, even at very high doses of Onfi, but your mileage may vary! On the plus side (if there are any pluses to a medication that is not controlling seizures!) at the lower doses of 20-30 mg/day she didn't really have any side effects; however, once she got over 40mg/day it seemed to be pretty sedating and she was tired all the time.

She started Vimpat at the end of November and since then she has had zero tonic-clonic seizures! She does continue to have simple partials, but now that she is at the maximum dose of Vimpat (400mg/day) they are happening much less frequently. When she first started on Vimpat she had a few weeks of exhaustion and very bad headaches, but they disappeared after about 3 weeks. She had no issues whatsover with a recent increase from 300mg to 400mg/day.

We are hoping to eventually get her off of the Onfi, and have been reducing it very very slowly - she is down to 35mg/day Onfi in addition to 400mg/day Vimpat. You need to reduce Onfi slowly because there is a danger of withdrawal seizures if you go too quickly. I do feel that she gets a bit anxious with each reduction, but it is hard to say whether that's a physiological reaction or a psychological one since she is so concerned about having seizures.

So for my daughter, Vimpat has been a much better medication than Onfi - but of course your reaction may be different! One drawback to both medications is the cost. Neither of them have generic options, and with our insurance plan our copays are ridiculous ($250/month for each!). Hopefully your insurance is better.
ONFI is not take as needed. It's take on regular schedule.

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.
I took clonazepam as the second A E D when I could not tolerate dilantin due to allergic reaction. Clonazepam, also a benzodiazepine, made my seizures worse. I was told that clobazam had a different chemical structure and tried that, but same result.

Having said that, we are all our own guinea pig in a sense. Your doctor should be able to fine the right medications for your seizure type(s) and then it is a matter of trial and error to find the right medication(s).
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