Wondering if anyone out there has weaned off phenobarbital and if it was bad.. also anyone taking onfi? How is it doing for yall? Been a while since I have done a med change and I have lots of absence and used to have grandma but 5 yrs ago had a vns put in bc my body just doesn't respond well anymore to meds but I'm having alot of them so he wants to wean me and try me on onfi .. they have has good results he said but I also take lots of other meds and just worried about the weaning part of phenobarbital. .



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Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

I too had a VNS inserted, at first it seem to help but then faded away with seizures. My advice to you is for your family Dr. to refer you to see an Epileptologist which is a Dr. that specializes in epilepsy. These Dr. can do special tests and find out if you are having seizures or if there's another problem going on.

Try taking vitamin B12 1000 mcg. once a day to see if that helps you and cut back on the carbs and starch foods. Also avoid bright flashing lights like in threaters. Just turn your head and close you eyes in that part of the movie.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi shereebergeon00,

Welcome to the forum! Darlene gave you some wonderful advice. I took phenobarbital for many yrs. then I went on Mysoline which breaks down into phenobarbital but it's a bit stronger. Depending on how long you've been taking the pheno. your Dr. may want to put you in the hospital to make sure you don't have severe seizures do to the withdraw of pheno. just like you I've had absence sz. along with complex partial sz. for 43 yrs. I have never tried the new med you will be taking. I will tell you to find the best sz. med for yourself just get a DNA test done and that will show what sz. med will be the best for you with the least side effects. Wishing you only the best and May God Bless You!

Sue