Clobazam and Weakness: What Users Say

• Lyn...
• July 21, 2016

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."

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

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 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."

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

For Epilepsy "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."

• Mum...
• November 26, 2019

"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 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 the 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."