Hi Dave,

(((hugs))) to you!

I have a refractory partial seizure disorder. I was put on dilantin when first diagnosed (12 yrs ago). After a year or so, I began losing sensation in my toes. Then my feet. It went on for about a year, before I finally got my neurologist to take me off dilantin. Thankfully, after a few weeks or so, I got feeling back in the extremities.

Since then, I've been on many medications. I've been on phenobarbital for 8 years now. My dosage kept being increased, to try to gain control of my seizures. I was at 180 mg's for a long time (which is almost twice "normal" dosage) before being sent to an epileptologist - a neurologist who spent additional years focusing on seizure disorders & treatment.

The epileptologist tried several times to get me off the phenobarbital. Very slow titration. No luck! My body is dependent upon the phenobarbital. When I don't have it, seizures increase and worsen. I had surgery in hopes of finally gaining control of my seizures and get off the phenobarbital 3/06. After 6 months of recovery, I was finally able to get down to 90 mg's successfully. I remained seizure-free and didn't have dependency issues rise as I was coming down.

A fall upon the ice 3/07 turned it around again. I fell on my head - causing intracraneal hemorrhage. Seizures came back, and I slowly went back up to 180 mg's. My condition is once again refractory. I work with the same epileptologist. I'm extremely hesitant to ever to a neurologist for my E again!

As you can see, I understand exactly where you are. I highly recommend seeing an epileptologist to get your dilantin levels under control more quickly and safely. You're welcome to PM me if you have any additional q's.

Best wishes and hugs to you!!
Shez