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Clobazam( Onfi/ Frisium) Withdrawal

A MyEpilepsyTeam Member asked a question 💭
Newport Gwent

Sorry ,I've not been on for a few months due to family illness. .I'm on 3 anti convulsants Briviact,Lamotrigine & clobazam. . I know this a benzodiazapine & quite a powerful med .)My new consultant suggested I come off clobazam,which I've done ,gradually,over 6 weeks.( I first took it as a rescue med about 20 years ago but it became a med I took am & pm about 10 years ago.I also take Briviact & Lamotrigine) .Absences & focal onset seizures haven't been controlled for 10 years. ) To cut a long… read more

April 12, 2022
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A MyEpilepsyTeam Member

Be careful what you take some medication cause osteoporosis both in men and women such as Keppra Vimpat Phenobarbital carbamazepine Primidone
Depakote and lamb tam Check with your neurologist for more information on this medication. So what you have to do is make sure you ask for a bone density test every 5 to 6 years from your primary care physician also my seizures come from the center of my brain right with my memory is what I take is ZONISAMIDE 100 mg 10 a day PRIMIDONE 50 mg 13 a day . This has controlled my seizures for a great deal of time the only time I get to see her now is in a lot of sleep two nights in a row and I overdo things so I don’t get sleep at night that’s when I pass out the next day two nights in a row lack of sleep and the next day I exhaust myself that’s when I pass out that night so I know what I have to do I have to make sure I don’t piss out and I make sure I get it out straight that’s why it’s extremely important for everyone of us to get eight hours straight Don’t skip your sleep it’s extremely important to us and matter what you must get your sleep you don’t think it’s important what it is
And then when I was younger I did not ever skipped my sleep and you can coordinate was extremely important that I got eight hours all the time and I make sure I did and I made sure I ate connecting of water but remember not to drink too much also you have to stay hydrated so I had to find a balance of staying hydrated and that doesn’t mean drinking coffee hydrate you remember that coffee mate you may feel warm with coffee for a little while hydration things that can help get into healthy Habitz as well so just try to remember that kind of thing those kind of things started getting to smoothies N things in that nature is extremely important to all of us to eat healthy and get into healthy eating habits like sweet potatoes and things that nature transfers out of your diet and a lot of fast food make your lunch so you know what’s in it I don’t know how to process food and things of that nature The best advice I can give you take your lunch to work make it and take it to work I took cost of the work in the microwave and I can help you in the microwave but still it’s better than nothing and it was healthy for me spinach pasta pasta and I made my own tomato sauce so I always did it and I loved it so I got a good habits try doing the right thing for your health and your family Family the girls are teaching their kids good healthy eating habits as well have a great day everybody.

April 12, 2022
A MyEpilepsyTeam Member

I've been on Clobazam for a lot of years. I had tremors & still had them but the meds worked to stop anything more. I had surgery & went off all meds with no seizures & then went back on it due to regular life but didn't have anything till a neuro tried to get me off the meds but 5 pills in less then 3 weeks. I'm still on it & 5 a day at 10mg a pill but no side effects. I would talk about slowing the amount of time getting off it

April 12, 2022
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A MyEpilepsyTeam Member

Christine, Onfi (clobazam) is addictive by its very nature, and why it was a controlled substance for so many years. That is why we have to take so much time titrating on or off of it. Those sound like symptoms of withdrawal to me, (and I had to speed-titrate off of a very addictive medicine, and I know what that feels like). Onfi made ALL the difference for me, and I’ve had no seizures since, after 20 years of them uncontrolled. I am on an even higher dose (20mg), and also take lamotrigine, and then gabapentin (but that’s mostly for the tremors I’ve developed later in life). I should be more careful of my liver myself, and need to ask my Dr about getting more frequent blood tests. See, I learn something new every day on this site!

I wish you all the best! Take your Dr’s advice but also trust the way you feel — we have to speak up and insist, repeatedly sometimes, until they respond to our concerns (as you probably know, sometimes they can be stubborn). Take care, and I hope your holidays are safe, healthy, and as seizure-safe as possible!

November 26, 2022
A MyEpilepsyTeam Member

Hey Christine I take Briviact & Lamictal and have been on That now for over 20 years. Hopefully when you get off that med your symptoms will subside. Taking Lamictal and Briviact together I haven’t had those symptoms. You may also not get all the symptoms of the side effects it carries because everybody’s body chemistry Is different. With the combination that I take I only have occasional tiredness occasional dizziness and occasional blurriness.Prayers going your way. I hope you’ve had a seizure free day.

April 12, 2022 (edited)
A MyEpilepsyTeam Member

I take lamitrogen and colonazepam (generic Lamictal and kalonipin) I took briviact and it was worse than a seizure itself . Not only did it made them worse it also made me crazy. I would have these mood swings were I'd have these angry spells for no reason(then forget what I did) , all I wanted to do was sleep..... they were awful! Lamitrogene helps and be careful with colonzepam (I've been taking it for 13 years) it makes me so tired ,but it's a very strong controlled substance where if you withdrawal from it right away it will make you very sick(like if you were off an illegal drug right away) im getting weened off of it slowly,but I've withdrawaled from it before and wasn't cute...

April 12, 2022

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