Stay on Phenytoin??

[Banner09]

I have been on it for 34 years and for most of it I’ve been able to lead a normal life. I too have become aware of long term has side affects and after discussion with my consultant he has offered to change my meds to Keppra. After reading things about Keppra and running the risk of making things worse I am debating to stick with phenytoin. How many people actually get these long term side effects ??

[milktrayman2]

Hi there, I've been on Phenytoin for over 20 years. About 11 years ago I was taking too much and experienced some side effects. A blood test identified that I had toxic levels and reduced immediately.

I now have a yearly review with a specialist and have been OK. My motto (rightly, or wrongly) is if it ain't broken, don't fix it...

[Banner09 in reply to milktrayman2]

What dosage were you on 11 years ago and what are you on now?

[milktrayman2 in reply to Banner09]

Forgive me for the late response. I was on 500 mg/day. Now on 400 mg/day...

[Banner09]

I had an MRI scan a few weeks ago and when it came back he said I’ve got a small build up of cellular atrophy. I asked my neurologist how long has it been there and why have you suddenly mentioned it? He said it’s a gradual thing that is nothing to worry about, is he saying this because he doesn’t know ?

I looked cellular atrophy up and it said something about dementia. Neurologist said it is likely caused by the phenytoin?

I also read about other long term side effects caused by phenytoin, so I’m in two minds to try this Keppra which has been offered to me. I must say phenytoin has been good to me for about 25+ years? But what damage its caused I don’t know?

[milktrayman2]

As I said, I've been on Phenytoin for over 20 years. The way I look at it is; medication is medication and all have their potential side effects. It's been suggested I change from Phenytoin, however, I chose to stick with it.

I guess it's a bit of a balancing act and a personal choice. On Phenytoin I have been stable and seizure free. Do I want to risk more seizures, or unknown side affects, no...