Onfi User Reviews & Ratings

• nyc...
• Taken for 1 to 6 months
• March 27, 2018

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 behavioral). Since Onfi was the only new variable in her medication regimen, 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 listed side effects are the result of Onfi. Neurology will go out of their way to blame everything else under the sun."

• Lyn...
• July 21, 2016

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."

• Cal...
• February 9, 2014

For Lennox-Gastaut Syndrome "This has been the best medicine for Lennox-Gastaut Syndrome in our son's 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."

• Anonymous
• March 14, 2021

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 well, sometimes get mad very fast, and I can’t even stand to be around people anymore. I want to get off this drug. I’m starting to take magnesium, zinc, D3, B complex, omegas, I have not had a seizure since June, and I’m sorry that the doctors are trying to keep me on this drug."

• Har...
• November 20, 2017

For Lennox-Gastaut Syndrome "It has an opioid effect. I forget words I've known 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."

• Anonymous
• Taken for less than 1 month
• May 11, 2023

"I was prescribed Onfi after a grand mal and a series of clonic tonic seizures, where I ended up hospitalized. I woke up feeling very loopy and euphoric. I was given a 10 mg dose once per day and my seizures stopped. However, once I was released, I realized my mood was unmanageable. I was crying and laughing uncontrollably. I could not get a handle on my emotions from one minute to the next. I had to stop taking it immediately! I switched to another medication and the side effects completely left."

• epi...
• Taken for 1 to 6 months
• October 2, 2024

"At 20 mg twice a day. Early in the morning, I feel like I've had half a drink, and it gets more intense from then. By the end of the day, I'm at the point where I'm stumbling around with stronger emotions than on any other medicine I've tried. Often, I fall asleep after only resting my head and blinking. I almost fall over frequently. I hate this medicine. I hate that it works. I hate that the only thing that's working so far impacts my daily life where it's impractical to continue. I hate this. But the main question is, is it effective? Yes, absolutely. I'm on the longest seizure-free streak I've ever had. Worth it? Absolutely not. Please don't mistake a 7/10 rating for a positive review. The effectiveness gets a B+, and the side effects get a D-. Avoid."

• STe...
• April 20, 2016

For Lennox-Gastaut Syndrome "The worst of 32 tried over the past 41 years."

• Mim...
• January 18, 2014

For Lennox-Gastaut Syndrome "Worked really well for several months, then breakthroughs. Adding Banzel now."

• Jos...
• Taken for 1 to 6 months
• March 18, 2021

For Lennox-Gastaut Syndrome "It works really well and causes less seizures and makes me happier and relieves stress."

• Jam...
• Taken for 6 months to 1 year
• August 5, 2022

For Lennox-Gastaut Syndrome "I've been on Onfi for 6 months and no change, I'm having more warnings and massive seizures so it is not a good drug for epilepsy. The side effects are sedation and fatigue I'm on 5mg"