User Reviews for Clobazam
Brand names: Onfi, Sympazan
Clobazam has an average rating of 6.4 out of 10 from a total of 33 reviews on Drugs.com. 55% of reviewers reported a positive experience, while 36% reported a negative experience.
|Epilepsy||20 reviews||56 medications|
|Lennox-Gastaut Syndrome||13 reviews||12 medications|
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Reviews for Clobazam
Onfi (clobazam) for Lennox-Gastaut Syndrome "A caregiver review. Started our adult daughter on Onfi for LGS (Lennox-Gastaut syndrome). In my opinion, there is an interaction between ONFI and Psych medication. It appears that the interaction amplifies many of the Onfi side effects (physical and behavior). Since ONFI was the only new variable in her medication regime what we observed was more than mere coincidence. Please carefully read the FDA listed side effects of the medication. Onfi is the Neurology team’s new and favorite drug. They can’t or won’t acknowledge that the list side effects are from the result of Onfi. Neurology will go out of their way to blame everything else under the sun."
Onfi (clobazam) for Lennox-Gastaut Syndrome "Justin became very shaky, weak, lost stability that he has not gained back. He went into massive seizures when on the drug. After two hospitalizations, we took him off. It has been over a year and he continues to have difficulty with standing up in the mornings and walking all the time."
Frequently asked questions
For Epilepsy "This clobazam is the only medication that I have been on that has truly had long term effect on my seizures. I have temporal lobe absence seizures, that have not been controlled by a long list of the anti-epileptic drugs."
For Epilepsy "For my epilepsy I was on Keppra and Lamictal a number of years ago and was 95% steady with no side effects. My last consultant tried me on tons of other meds and combinations. clobazam being one which nearly drove me crazy. Had a lot of seizures and he decided to put me back on the Lamictal and Keppra only at a much higher dose. I had been in hospital and the Clobazam was given but was only meant to be temporary, he decided to keep me on it along with the Keppra and Lamictal but nearly every side effect one can get from Clobazam I have, and I have a lot of seizures. I want to come off the Clobazam but my new Consultant isn't listening for some reason."
Are you taking this medicine?
Onfi (clobazam) for Lennox-Gastaut Syndrome "I’ve been taking Onfi and had about five seizures a year now. The side effects are I can’t walk good, sometimes get mad very fast and I can’t even stand be around people anymore. I want to get off this drug. I’m starting to take magnesium, zinc, d3, b complex, omegas have not had a seizure since June and sorry that the doctors trying to keep me on this drug ."
Onfi (clobazam) for Lennox-Gastaut Syndrome "This has been the best medicine for Lennox-Gastaut Syndrome in our sons 11 years. It was tough going for about 6 months of severe highs and lows of crying to laughing hysterically. But getting through that has been amazing. He's more vocal, his pupils are not staying dilated and he seems to understand more. I would tell any parent looking for help to please give this medicine a try."
For Epilepsy "So far I've had a good experience using Onfi. I am using it combined with Trileptal. About 90% of my seizures happen during my sleep. So I take 10mg before bedtime. I used to have 1-2 seizures a month, it's been over 6 months since my last one. I've tried almost every anti epilepsy drug out there. Phenobarbital, Keppra, Topamax, zonegran. None seemed to work. Side effects are minimal. When I first took it, it would make me really sleepy (which isn't bad since I only take it at bedtime). Aside from that I haven't noticed any other side effects."
For Epilepsy "My daughter is 21 and has had intractable epilepsy since age 7. Onfi is the first AED that has controlled her seizures. She has been 4 months seizure free since starting to take 10mg Onfi twice a day."
For Epilepsy "Our toddler age 3 was recently put on Clobazam for Pediatric Seizures. It turned out sweet little girl into an angry ball of fury and mean behavior. My husband and I are horrified by how it affects her. We give at night because it drugs her up so much. Initially it causes hyperactivity and restlessness then 2 hrs later she's a zombie. I do not recommend this for toddlers or children."
Onfi (clobazam) for Lennox-Gastaut Syndrome "It has an opiod effect. I forget words I've know all my life. I am more fatigued. My doctor prescribed it for me "because". I haven't noticed any effect. Coming off the drug, my foot and upper leg get shaky. It is also a very expensive drug."
For Epilepsy "This is a very good benzo for anxiety relief. It is the only one I think that do not cause sedation and makes me function in my day with a very smooth relaxation. I only take 5 mg a day and with that small dose works fine with me, it gives me a mellow and serene anxiety free. Sometimes I take the other half before sleep but just when I really need it. Clobazam (Frisium here in Mexico) is a very underrated benzo, I think should be prescribed more often. I find it's strange it is hardly known and not so popular."
For Epilepsy "My Dr added Onfi to my regimen to help control my seizures which are mostly triggered by my anxiety. I was originally taking Lamictal and having seizures once every 8-10 weeks then he switched me to Trileptal where for a while I was having them 2-3 a day for almost 3 months. Then they slowed down and then they began to be triggered by anxiety and I was taking Xanax as needed. So he decided to switch me to Onfi at night instead to control my anxiety on a time released basis. After 3 weeks, not only was I still having seizures but I also slipped into a deep depression. I expected to be unstable for a short period of time, but after about a week and a half I began having severe depression and nightmares and then began having really dark thoughts. I am bipolar and have been hospitalized years ago so I had to be taken off of the medication immediately."
For Epilepsy "The first two weeks you slept constantly but after that your body got used to it and it immediately stop the myclonics it was a good tool for intractable epilepsy child. Every single person that has epilepsy is different so this might work for you it may not work for you but it's an option."
"Firstly I started taking 10mg Clobazam for sleeping disorders and anxiety instead of 0,25 mg Xanax. After quite some time I felt like I get better sleep with Clobazam. I was taking Clobazam for almost a month now, sometimes I even managed to drink a few beers without any issues. Than something really bad happened in my life, my symptoms pointed towards GAD. I had serious panic attacks, shortage of breath, restlessness, anxiety, insomnia and concentration issues. My doctor advised me that I should increase the daily dosage of Clobazam to 40 mg. It has actually made my symptoms worse, I kept having seizures, insomnia, I had difficulties with staying in one place, etc. We've finally changed to Lorazepam (2mg/day) and all of my physical symptoms suddenly stopped, although I still have issues with concentrating, but it's not as bad as it was before. Overall: If you suffer from serious anxiety, Clobazam is not for you. Even if you suffer from sleeplessness, try to look elsewhere."
For Epilepsy "I was put on clobazam. I don’t know why my doctor kept telling me I needed to take it. It has made me loose words and my foreign languages are not as easy to remember. It also makes my walking more difficult. I do not have Lenox Gestalt syndrome and have not seen this drug help me. When I first started on it, it was $700 per month. When it came out under the name clobazam and the pill looked the same the price drastically decreased."
For Epilepsy "Neuro team changed me from Keppra & Diazepam to Lamotrigine & Clobazam for two reasons. Keppra caused vile stomach pain, loss of appetite & extreme weight loss, & my prescribers just really weren't happy with me being on long term Diazepam- period. It was decided that the combination of Lamotrigine & Clobazam would be effective for my epilepsy (traumatic brain injury acquired) & anxiety, & it would have the added benefit of helping with insomnia. I wasn't convinced that it would do the job TBH, but after a short time I did start to feel better, & my only complaint is that I forget a lot of things... I've persisted with this combo (in part because of the difficulties covid19 has caused in seeing a doctor/specialist over the last year ) & it has been a good move! I'm still ridiculously forgetful, but I can live with that if my epilepsy & anxiety are controlled, & the only weight gain I've experienced is the weight I lost while suffering on the darned Keppra!"
For Epilepsy "I've been on the drug since Oct 2018. 40mg a day. It replaced Lamictal. I am in the process of weaning off the drug. In the beginning, it seemed fine. But it never really stopped seizures. It just changed the way they happen. 2 years into taking it, I started to develop these moments of an amnesia like state. I was aware of my surroundings. But could not remember events. They last anywhere from 5 to 10min. 3 months into taking the medication, I had my PC check my testosterone levels. In the beginning I was on 20mg a day. And my T levels came back middle of the road. So I was not concerned. But I had my PC check my T levels again recently because I have not felt like myself. No libido whatsoever. And my T levels came back at almost zero. My mood for the past 8 months has just been blah. As if I'm living life going though the motions. But without any sense of purpose. And I feel like my emotions are shut off. Weaning off, things seem to be getting better."
For Epilepsy "This medication worked wonders for me. Controlled my seizures with Lamotrigine. However the Clobazam made me gain a TON of weight in a short period of time. I gained around 40 pounds (about 8 months). As soon as Zonisamide was discontinued. I was orginally just on Lamotrigine, no weight gain. As soon as I started Clobazam the weight gained happened."
For Epilepsy "Clobazam (10 mg's nightly) just made me easily confrontational and agitated, but mainly as someone mentioned they felt 'opiatey' plus contributed to feel even weaker, lethargic with terrible constipation. Hoping to come off them ASAP because as a recovering addict with 'opiate induced Epilepsy' have to be careful and avoid Benzos or anything related etc. 1000 MG's of Keppra will be hopefully all I need without Frisium/Clobezam."
"Hi everyone, we started my 2 and a half year old on Clobazam ( low dose) around a month ago to help with his Dystonia, (along with other medications) . He has Lissencephaly a set of rare brain disorders. Almost immediately he was extremely drowsy, floppy and and producing massive amounts of drool and mucus. This has made it very hard for him to eat, drink and sleep as he finds it hard to breathe. Couple this with a common cold and we ended up in hospital. We had worked very hard at physio for six months to get him sitting up, were very close until we started Clobazam. He is now very weak, all our hard work undone. The Dystonia is also coming back. Of all the seizure meds we have tried this one does not suit our little one at all! Hope we can get off it soon."
For Epilepsy "We're all different BUT I've been experiencing various types of epilepsy seizures since I was 13. Eventually, my doctors concluded that my epilepsy is drug-resistant as it seems that there are only a couple of meds they have yet to test on me. Some tend to help better, others not at all. I'm currently taking 4 different meds in various combinations, including clobazam, which I've had since 2012. One of my consultants mentioned that it's probably useless by now, perhaps I should replace it with something better. It took me a while to do so, and guess what? My epilepsy got much worse, there was a point when I could no longer leave home, work or live on my own. It's been a year since I am back on the previous dosage, things are somewhat better, at least it's rare for me to get seizure clusters anymore but I'm not a fully-functioning adult yet. This is the kind of med that helps to an extent, good to stop a cluster but if you want to stop taking it, it's best to know the risks"
For Epilepsy "Just started taking clobazam to replace topamax. It has helped with less seizures. The unaccredited side effect for me has been it gives water/h2o a horrible taste. I can drink sweet tea, cranberry apple juice and any other flavored beverage and no bad taste. Unless my glass is empty and melting ice is all the drink I have is that watered down flavor then part of that shows up. This is and I hope it remains the only side effect I have. So far working with Vimpat. The last seizure was minor that occurred while walking two miles with friends and family and they held onto my arms as I was able to walk and keep control of my thoughts. The seizure was short and I was able to jog shortly after."
For Epilepsy "Onfi in combination with Vimpat has stopped by son’s seizures for almost 5 years now. He has gone from 10-20 seizures a year to none in 5 years."
Onfi (clobazam) for Lennox-Gastaut Syndrome "The worst of 32 tried over the past 41 years."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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For Epilepsy "After trying several drugs with bad side effects (Keppra, Vimpat, and Topamax), my doctor chose Clobazam. He thought Clobazam would also help with anxiety, since it's a part of the benzodiazepine family. It does nothing for either - I once took a slightly higher dose than I normally take for a medical appointment I was nervous about & it didn't help with the anxiety at all! I'm also still having seizures but was told there's no other drug I can take since the others had bad side effects or don't work at all (I was on the highest dose of Keppra). I also take Lamotrigine for seizures so I guess I'll have to rely on that to relieve the seizures. The Clobazam pills also make me have a gross taste in my mouth after I swallow them; the pharmacist said there is no other form of Clobazam available - so I'm stuck with having to take that, along with the Lamotrigine. Clobazam is useless. I read several reviews saying that they don't work & I can see why - because I'm having the same problem."