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Onfi for Lennox-Gastaut Syndrome User Reviews

Onfi has an average rating of 5.8 out of 10 from a total of 11 reviews for the treatment of Lennox-Gastaut Syndrome. 45% of reviewers reported a positive experience, while 36% reported a negative experience.

Onfi rating summary

5.8/10 average rating

11 ratings from 11 user reviews.

Compare all 23 medications used in the treatment of Lennox-Gastaut Syndrome.

10
36%
9
0%
8
9%
7
0%
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0%
5
18%
4
0%
3
9%
2
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1
27%

Reviews for Onfi

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

"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."

5 / 10
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39 Report
  • Lynne...
  • July 21, 2016

"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."

1 / 10
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44 Report
  • Calebs...
  • February 9, 2014

"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."

10 / 10
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43 Report

Frequently asked questions

  • Anonymous
  • March 14, 2021

"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 ."

5 / 10
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16 Report
  • Harry...
  • November 20, 2017

"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."

3 / 10
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19 Report

Are you taking this medicine?

  • STex
  • April 20, 2016

"The worst of 32 tried over the past 41 years."

1 / 10
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22 Report
  • MimiM...
  • January 18, 2014

"Worked really well for several months, then breakthroughs. Adding Banzel now."

8 / 10
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20 Report
  • alex...
  • Taken for 1 to 6 months
  • January 16, 2013

"Great."

10 / 10
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14 Report
  • Joseph
  • Taken for 1 to 6 months
  • March 18, 2021

"It works really well and causes less seizures and makes me happier and relieves stress."

10 / 10
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1 Report
  • Colts...
  • September 23, 2018

"Works great"

10 / 10
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1 Report
  • James...
  • Taken for 6 months to 1 year
  • August 5, 2022

"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"

1 / 10
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0 Report

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.

Learn more about Lennox-Gastaut Syndrome