Epilepsy monitoring unit

Posted by Jake @jakedduck1, 3 days ago

I saw an Epileptologist at Stanford Mon and she seems to want to take me off Phenobarbital as does my primary. Possibly wants to add Keppra to my Carbatrol. But I'm of the opinion why fix it if it isn't broke. Carbatrol & Phenobarbital control my seizures except when I am non-compliant with my medication. I'm concerned about how difficult it may be stopping Phenobarbital. I know it's recommended to decrease 10% a month if a person has taken it for 10 years. I have taken it for 58 years and seizures are common even if doing a micro taper with Phenobarbital.
If I do decide to make the switch, I'm very concerned about stopping the Phenobarbital.
Take care,
Jake

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absentsenior | @absentsenior | 2 days ago

Jake, I suspect the reason they want you off of it is what long term use does to your bone and liver health. Many other side effects probably have become part of who you are. Coming off of these medications can be very difficult and possibly you could come out of it a completely different person. That's not always a bad thing. Has your doctor considered an RNS device? I had one implanted earlier this year and it is making a big difference. For what it's worth, I just turned 70 and deal with adult onset and am very happy I had the surgery.