Clobazam for Epilepsy User Reviews

• Sai...
• March 29, 2020

"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, and 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, and I can see why - because I'm having the same problem."

• bca...
• Taken for 6 months to 1 year
• February 15, 2020

"This clobazam is the only medication that I have been on that has truly had a long-term effect on my seizures. I have temporal lobe absence seizures that have not been controlled by a long list of anti-epileptic drugs."

• Sun...
• Taken for less than 1 month
• January 18, 2021

"Our toddler, age 3, was recently put on Clobazam for pediatric seizures. It turned our 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 it at night because it drugs her up so much. Initially, it causes hyperactivity and restlessness, then, 2 hours later, she's a zombie. I do not recommend this for toddlers or children."

• Mar...
• Taken for 6 months to 1 year
• June 23, 2019

"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 10 mg 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."

• Dav...
• Taken for 2 to 5 years
• July 26, 2020

"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 the hospital, and 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."

• sar...
• Taken for 1 to 6 months
• September 5, 2017

"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 10 mg Onfi twice a day."

• Bob...
• Taken for 1 to 6 months
• May 12, 2023

"Our autistic daughter usually had around three epileptic seizures in a month under oxcarbazepine treatment. At the beginning, we were skeptical about giving her clobazam due to some serious possible side effects it could bring. Finally, we started clobazam twice a day with the doses recommended by the doctor. We discontinued oxcarbazepine. So far, after three months of continuous treatment, we have seen not even one epilepsy episode. We feel extraordinarily pleased and happy with the results of this medication. She only gained a few pounds, but nothing to be worried about."

• Abc...
• Taken for 1 to 2 years
• April 21, 2023

"Slept the first two weeks and didn’t know if I could get through it. Two weeks passed, and it’s the only medication that’s been able to effectively manage my nighttime myoclonic and partial focal seizures. I take it along with Lamictal ER, and it’s truly been a game-changer. However, I do experience more brain fogginess and some weird peripheral vision or spatial perception issues randomly. I have zero ideas why it’s classified as a benzo, as it has absolutely no anti-anxiety or tranquil effects, well, not for me at least."

• Luc...
• Taken for 2 to 5 years
• December 23, 2024

"Clobazam is what got my tonic-clonic seizures under control. In the 2 years I've been taking it, I've only had 3 night seizures, which is an incredible improvement over having seizures both awake and asleep 5+ times a month! It does make me drowsy, and I have to avoid caffeine as that's a trigger. Overall, though, it has improved my quality of life drastically, even if I do sleep a bit more than a normal person does now. Remember, though, like all anti-epileptic drugs, it's all just a gamble to find the medication(s) that work for you. Results can and likely will vary."

• Evi...
• Taken for 10 years or more
• August 18, 2022

"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 four 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."

• Jen...
• Taken for less than 1 month
• September 6, 2018

"My doctor 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 the medication immediately."

• Sta...
• Taken for 2 to 5 years
• January 8, 2020

"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 originally just on Lamotrigine, no weight gain. As soon as I started Clobazam, the weight gain happened."

• Anonymous
• Taken for 2 to 5 years
• October 15, 2018

"The first two weeks, you slept constantly, but after that, your body got used to it, and it immediately stopped the myoclonics. It was a good tool for intractable epilepsy in a 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."

• Zio...
• Taken for 5 to 10 years
• November 20, 2020

"I was put on clobazam. I don’t know why my doctor kept telling me I needed to take it. It has made me lose words and my foreign languages are not as easy to remember. It also makes my walking more difficult. I do not have Lennox-Gastaut 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."

• Agg...
• Taken for 2 to 5 years
• July 25, 2021

"I've been on the drug since Oct. 2018, 40 mg 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. Two 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 10 min. Three months into taking the medication, I had my PCP check my testosterone levels. In the beginning, I was on 20 mg a day, and my T levels came back middle of the road, so I was not concerned. But I had my PCP 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 through 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."

• Equ...
• Taken for 1 to 6 months
• September 13, 2017

"This is a very good benzo for anxiety relief. It is the only one I think that does 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, it works fine for me, it gives me a mellow and serene anxiety-free state. 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 it should be prescribed more often. I find it's strange it is hardly known and not so popular."

• Tox...
• March 2, 2021

"The neuro team changed me from Keppra and Diazepam to Lamotrigine and Clobazam for two reasons. Keppra caused vile stomach pain, loss of appetite, and extreme weight loss, and my prescribers just really weren't happy with me being on long-term Diazepam-period. It was decided that the combination of Lamotrigine and Clobazam would be effective for my epilepsy (traumatic brain injury acquired) and anxiety, and it would have the added benefit of helping with insomnia. I wasn't convinced that it would do the job, to be honest, but after a short time, I did start to feel better, and my only complaint is that I forget a lot of things... I've persisted with this combo (in part because of the difficulties COVID-19 has caused in seeing a doctor/specialist over the last year) and it has been a good move! I'm still ridiculously forgetful, but I can live with that if my epilepsy and anxiety are controlled, and the only weight gain I've experienced is the weight I lost while suffering on the darned Keppra!"

• Wor...
• Taken for less than 1 month
• May 22, 2022

"Just started taking clobazam to replace Topamax. It has helped with fewer seizures. The unaccounted 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."

• Jen...
• Taken for 6 months to 1 year
• November 24, 2024

"I started out taking Clobazam as a breakthrough seizure medication. When I started, I realized that I was getting a rash, and I appeared to be allergic to it. I started taking an allergy medication because my seizures were under great control when I started this, for at least a month. It was kind of like a miracle drug for me, as it also treats anxiety. I started to notice that I was having problems swallowing, and I did eventually choke several times, one of which was very serious, and I ended up in the ER, where they had to take out the obstruction in my throat. I later found out once I really looked into the effects of this medication. When I started this medication, the doctor just kind of said the basic things to look out for and to read the warnings. That was about it. I tried to continue taking it, but then I started having a lot more seizures, and it was just not working, it seemed to be causing more issues than it was to be beneficial for the seizures."

• Nic...
• Taken for 6 months to 1 year
• March 21, 2019

"Clobazam (10 mg nightly) just made me easily confrontational and agitated, but mainly, as someone mentioned, they felt 'opiatey' plus contributed to feeling even weaker, lethargic, with terrible constipation. Hoping to come off them ASAP because, as a recovering addict with 'opiate-induced epilepsy,' I have to be careful and avoid benzodiazepines or anything related, etc. 1000 mg of Keppra will be hopefully all I need without Frisium/Clobazam."

• Bub...
• Taken for less than 1 month
• March 10, 2025

"My last seizure was many years ago. However, I have been having crippling weekly auras. Ativan has been the only small help over the years. It seems like this phenomenon started when I quit drinking alcohol 15 years ago. My life has been pretty unmanageable. Hard to maintain relationships and friends due to my unpredictable psychological availability. I started clobazam 10 mg once or twice weekly recently, and it has helped a great deal. I am now more confident and can make plans for future dates knowing I will be available. I understand the dangers of benzos. For now, the benefits of the drug outweigh the potential harm. I know tapering off benzodiazepines is worse than other drugs, so I am being extremely cautious."

• Ano...
• Taken for less than 1 month
• April 25, 2025

"I have generalized epilepsy that gives me absence seizures that have been around since 2017, and I also have had 3 tonic-clonic seizures in the past 4 years. About 2 years ago, I was put on clobazam (10 mg twice a day), and the side effects were horrible. I was crying and angry all the time, I couldn’t control my emotions at all, so I got off of it. I had a tonic-clonic seizure a bit ago and got put on clobazam again, but this time it’s 2.5 mg twice a day. It’s been a game changer, to be honest. My emotions are better (I struggle with anxiety and depression), and I sleep so much better. Ever since I started taking it again, I’ve been 100% seizure-free. My advice: if it’s not helping, ask your doctor to split the dose in half and take it twice a day. It’s a lot easier on the body and it helps the drowsiness while also allowing you to sleep. Hope this helps for somebody."

• Bel...
• Taken for less than 1 month
• May 23, 2024

"Since taking this drug, my balance has been so bad. I have to use a cane. I am very sleepy and groggy and cannot function. It has helped with seizures. I am taking it with Xcopri. I just feel like a zombie."

• Tom...
• February 14, 2019

"Onfi, in combination with Vimpat, has stopped my son’s seizures for almost 5 years now. He has gone from 10-20 seizures a year to none in 5 years."

• lou...
• February 11, 2020

"Using the brand name Onfi works very well controlling my seizures. It's upsetting my insurance company took it off their formulary for 2020."