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  #81  
Old 01-20-2015, 02:23 PM
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Excellent news!
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  #82  
Old 01-20-2015, 06:15 PM
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I agree with Linda, be careful with benzos.

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  #83  
Old 02-02-2015, 03:23 PM
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Klonopin experiences?


My daughter was prescribed Klonopin a few months ago when Vimpat alone wasn't working for her (and other drugs combined with Vimpat before that). We were afraid to try it at the time, reading about dosage tolerance, addiction, withdrawal, and a recent study (September 2014) linking benzodiazepines to Alzheimer's.

She added Tegretol to the Vimpat instead, which only resulted in increased seizures. Her doctor's advice now is to try Onfi, another benzodiazepine.

Since she never gave the Klonopin a try (and we have it in the house already) I suggested she go ahead and try it before getting the Onfi. I'm looking for people's experiences with Klonopin, trying to forget the possible link to Alzheimer's because maybe it will be a drug that works for her. And she does have anxiety so it should help that as well. Anyone have any advice to share?
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  #84  
Old 02-02-2015, 04:38 PM
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I will give you my perspective, and hopefully others will weigh in as well. I'm not a strong proponent of using benzos unless there really isn't any other option. I'm currently withdrawing from klonopin. I was on it for 7 months of continual use, following 10+ years of what averaged out to be weekly use for either sleep or, more recently, seizures, and the belief was there wasn't another good solution to stop my constant myoclonic seizures this past summer as my health was bad, which was thought to be temporary. The problem with these drugs is you quickly hit tolerance to a dose--and then the med no longer helps at some point unless you escalate it. If you don't, you can go into tolerance withdrawal or inter-dose withdrawal, which can create a host of issues in some people, including rebound seizures. In some cases the only recourse is to either continually increase the dose, or go off it. Getting off it can be very difficult and can take months of recovery. I'm having an easy time of it compared to many others who discontinue--but I won't call it easy at all. If I had it to do over again, I would have insisted in a base med increase (or a new med addition) over adding a daily benzo. Others may feel differently. But I know from withdrawing my brain receptors have physically changed, and changing back is a long road. I felt good about using it as an occasional rescue med only for breakthrough seizures and status myoclonus--occasionally, it's a great, highly effective med. But I understand your concerns about going the daily benzo road and believe your concerns are valid. That's my two.
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  #85  
Old 02-02-2015, 04:58 PM
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Originally Posted by bandmom View Post:
My daughter was prescribed Klonopin a few months ago when Vimpat alone wasn't working for her (and other drugs combined with Vimpat before that). We were afraid to try it at the time, reading about dosage tolerance, addiction, withdrawal, and a recent study (September 2014) linking benzodiazepines to Alzheimer's.

She added Tegretol to the Vimpat instead, which only resulted in increased seizures. Her doctor's advice now is to try Onfi, another benzodiazepine.

Since she never gave the Klonopin a try (and we have it in the house already) I suggested she go ahead and try it before getting the Onfi. I'm looking for people's experiences with Klonopin, trying to forget the possible link to Alzheimer's because maybe it will be a drug that works for her. And she does have anxiety so it should help that as well. Anyone have any advice to share?
I take 2mg Klonopin for sleep. Ativan helps with stopping my seizures so I take both. The ativan in PRN.
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  #86  
Old 02-02-2015, 05:03 PM
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Hi, Bandmom
I'm sure you are aware that everyone responds to the different medications very differently, and dose requirements for seizure control very tremendously from person to person.
It is a really tough call sometimes, between controlling/improving seizures and medication side effects. I was on clonazepam (aka klonopin) at one point, and then clobazam. Both helped somewhat at first, but I developed a tolerance to them very quickly and they became less effective. For me they also caused very uncomfortable urine retention at times, which can be a side effect of benzos. At higher doses (which I needed to progress to as a lower dose became less effective) it was like I was living in a fog. Personally I will not take benzos again unless it is an absolute last resort.
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  #87  
Old 02-02-2015, 05:46 PM
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Originally Posted by masterjen View Post:
Hi, Bandmom
I'm sure you are aware that everyone responds to the different medications very differently, and dose requirements for seizure control very tremendously from person to person.
It is a really tough call sometimes, between controlling/improving seizures and medication side effects. I was on clonazepam (aka klonopin) at one point, and then clobazam. Both helped somewhat at first, but I developed a tolerance to them very quickly and they became less effective. For me they also caused very uncomfortable urine retention at times, which can be a side effect of benzos. At higher doses (which I needed to progress to as a lower dose became less effective) it was like I was living in a fog. Personally I will not take benzos again unless it is an absolute last resort.
Almost everything causes urinary retention for me. I had to go to the ER a couple months ago to have a catheter put in for a couple days. Anticholinergic drugs and I frequently don't get along.
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Old 02-02-2015, 09:11 PM
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Thank you so much for your responses, I will share them with my daughter and we'll take more time to think about this decision. I really appreciate getting your opinions
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  #89  
Old 02-03-2015, 03:02 PM
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I will start off by saying different bodies react differently to different medications, this is my experience.

About a year ago, the neurologist in my hometown prescribed .5 mg every eight hours for tremors and to help me sleep.

When I went to get a second opinion, the other doctor upped the dosage to 1.5 mg at night. That made me feel so loopy that when I woke up, I was stumbling all over the place. I told them about this, so they ended up changing it to .5 mg in the morning (when my tremors usually kick in) and 1.0 mg at night to help me sleep. It worked fine at first, but once they increased my dosage, about a few weeks to a month later, the tremors started up again and could only get three to five hours of sleep.

In the end however, I'm going against doctors orders and refusing to take that much. I will ONLY use it if things are really bad. Even then, I'll only take a smaller amount they prescribed.

I'm not a huge fan of benzos since I started to become quite addicted. It was as if the devil on my shoulder was telling me "you should take more to take the edge off."



Major kudos for you both to think about everything before making this decision. I wish you and your daughter nothing but the best!!!
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  #90  
Old 02-12-2015, 09:09 PM
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We decided not to use Klonopin. So now the doctor prescribed ONFI/Clobazam, starting with 10 mg at night and increasing to 10 mg twice a day. He said it was a little better than Klonopin, as it was a 1,5 benzo rather than a 1,4.

Because ONFI is another benzo I feel the same way as I do about Klonopin, even though the doctor assured us that many people have used it and come off of it with no problem. I just don't see it as a good long-term drug for epilepsy. I believe it's been used longer in Europe than the US, so I searched a UK forum and found that most people did not recommend it, for the same reason as any benzo. Most had to increase the dose due to tolerance and had an awful time with withdrawal. Many said they have been told never to take it long-term, but use it only occasionally when likely to have clusters (like women at certain times of the month) or they keep it on hand as a rescue drug.

If we weren't willing to try Klonopin then we should feel the same about Onfi, right? Masterjen, you've taken both, did they both seem to have the same effects? My gut tells me to go along with the advice to avoid all benzos.
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  #91  
Old 02-12-2015, 09:58 PM
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Hi, Bandmom;
I found the mental side effects (ie. the sense of being in a fog) with the clobazam/onfi to be not as bad as with Klonopin, but urine retention issues were the same. I went off Klonopin gradually as I added in the clobazam, so wasn't aware of withdrawal. As far as stopping the clobazam, again it was done gradually and I did not have withdrawal issues. Lamictal was added in as I was tapering off the clobazam. One thing I did forget to mention earlier was that the effectiveness of the benzos for me were short-lived in that there was no way I could get through most nights without a seizure close to morning - as though they would work for 5-6 hours then the medication would be out of my system. This may not be the case for everybody, but it sure was for me.
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  #92  
Old 02-13-2015, 04:49 AM
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I have not been on the Onfi but have been on two different benzos and they were very different for me. One I took for months without side effects. Klonopin I could not tolerate at all.
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Old 02-13-2015, 01:02 PM
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I was on Clonazepam(Klonopin) I was on it for years.If I didn't take it my seizures would definitely start increasing.benzodiazepines have always helped my seizures.
When you come off it you have to come off it slowly. And you increase it very slowly also.
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  #94  
Old 02-13-2015, 05:10 PM
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I'm on Ativan, but I have a tolerance to it and it doesn't work very well any more, so my neurologist is thinking of changing me to Klonopin. I've been on Restoril and Valium in the past for different issues. I've never had any trouble with benzos. Mood-wise, in the early days of taking it, I'd go so far as to credit Ativan with saving my life.
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  #95  
Old 02-13-2015, 05:15 PM
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My husband has taken a small dose of ativan for years. He credits it with keeping his ulcerative colitis in remission for many years.
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  #96  
Old 02-15-2015, 11:00 AM
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Clobazam and Tegretol


Hello !

I suffer from tonic-clonic seizure since 9 years , but recently I started to have other type of seizure during my sleep. My neugologist gave me clobazam (100 mg). I am really tired during the day. Could these two drungs have some interaction ?!
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Old 02-15-2015, 05:10 PM
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Hi Thegame, welcome to CWE!

Clobazam and Tegretol together have a moderate interaction: They can potentially make you drowsy and/or dizzy, and you might also have problems concentrating. If the side effects are problematic, ask your neurologist about possibly reducing the dose or changing the timing of when you take them to see if helps. Do the two meds together control both kinds of seizures?

Best,
Nakamova
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  #98  
Old 02-15-2015, 05:29 PM
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Tegretol is for my tonic-clonic seizure. I am free since 3 years. In december, I got few seizures of 10 to 15 seconds each night. I didnt had any since I took Clobazam. I dont like benzo but that work well for the moment. I will ask my neurologist to take only 5 mg instead of 10 mg of clobazam to see if that can reduce the side effect.

Thank for help
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  #99  
Old 02-15-2015, 11:52 PM
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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.

She's been planning to try acupuncture for her anxiety (she was supposed to have therapy too but hasn't made an appointment yet) so we'll go ahead with that and see what happens. Her epilepsy diagnosis is certain, but the doctor thinks she could also be having psychogenic seizures so I'm interested in seeing what happens if she works on the anxiety issue. Plus she recently started Vitamin D supplements to correct a deficiency and I'd like to see if that has any effect on her seizures. So that's the plan. Thanks for your comments if we need to we'll reconsider the benzos at another time.
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Old 02-16-2015, 03:39 AM
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Sounds like a great plan. Acupuncture always sounded like a bunch of junk to me BEFORE I tried it. While it didn't help me with the primary reason I was sent, it was probably the first time in my life that I felt truly relaxed. I didn't go there for anxiety but it absolutely helped with that. The woman I was seeing always talked to me for at least 15-20 minutes before and was such an empathic and uplifting person. If I hope your daughter has the same, good, experience.
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