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A warning about Onfi/Clobazam

Wed, 04/15/2020 - 13:19
I want to scream this from the rooftops because my experience was so awful. Of course, everyone is different and their bodies react differently. However, withdrawal from onfi was THE most difficult I ever had to go through. I was so sick for so long mentally and physically. Please use with care and have a health care professional who understands the withdrawal process. Be well and stay safe everyone!

Comments

I’m so sorry that you had to

Submitted by Patriotrehab on Wed, 2020-04-15 - 16:37
I’m so sorry that you had to go through that experience. It sounds like you were not given the proper warning when they first prescribed it to you or as part of discontinuing the medication. It’s true that Clobazam and other Benzodiazepines have serious withdrawal effects that require titrating slowly and sometimes even hospitalization depending on the dosage and the length of time the person has been on the medication. I’m a licensed clinical social worker as well as a person with epilepsy and I basically fought against my epilepsy specialist about putting me on any Benzo because of my experience with clients who have take the medications for mental health reasons. But, I just recently agreed to start Clobazam at a low dose because I’m out of options for seizure medications that don’t have the same risks. I have hope that it will control my seizures and I won’t have to go through the withdrawals. As with any medication that a doctor prescribes you, be sure to read the information about it ahead of time so that you know what the risks/benefits are.

Hi, Thank you sharing your

Submitted by Anonymous on Thu, 2020-04-16 - 08:24
Hi, Thank you sharing your experience, it sounds like you’ve been through a lot. As you stated treatment and how the body may react to certain medications varies for each individual. It’s also very important to work closely with your healthcare team(that you’re comfortable with) especially when starting or tapering off a medication. If you feel you cannot talk openly with your doctor's or that you all aren’t working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions . As Gianna mentioned in her comment, it’s important to learn more about any medications you take and discuss all potential risk/benefits with your healthcare team. In addition to talking with your healthcare team about your medications, pharmacists and our section on Seizure Medication and Epilepsy, is a great resource for learning about different AED’s, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-medication-list. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline  .

Funny thing is when I was on

Submitted by katec1 on Thu, 2020-04-16 - 11:11
Funny thing is when I was on the onfi, it worked pretty well!When I had to stop taking it due to insurance issues, my neuro told me to break it in half and take half and  if I felt ok, stop taking it. I did and I felt ok for two days, so I stopped...the half-life is about 3 days, one that day, it knocked me on my ass!!!! I can’t believe me doctor was so reckless. Since then, I have been working with a new neurologist. She is awesome and I will never leave her until she retires, which I hope isn’t for a long time!!! Thanks for your thoughtful response. Be well and stay safe!

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