Phenytoin and EEGs

[Kblue]

Hi all. My husband has been on phneytoin for 3 years although they are not definite of seizure activity after his brain injury we are therefore going for an EEG but they have also said they dont know if that will tell us anything really he wants to wean off it as we have been told its not a good drug to be on longterm what are peoplea experiences of phenytoin and coming off and does it actually stop seizures? Thanks

[Molly15]

Hi there. My husband has been on Phenytoin since January this year. He was seizure free until the end of March, when he had his first one. Since then he has had 4 more, and each time the dose of phenytoin has been increased. He is now on 225mgs. in the morning and 200 mgs in the evening. Touch wood he has not had one for 3 weeks, and each time we have to convince ourselves it will be the last. The neuro's have said that if they keep occurring they will add kepra as a back up drug, so at least we know if they keep happening there is still something they can do. They are awful things, and you feel like you are living on the edge waiting for the next one, but at least they are not life threatening. Steve had a burst aneurysm, which caused a SAH and stroke in October last year, and is now doing well, slowly slowly but getting there. Good luck to you, and I hope the weaning off process works for you. It is a worry not knowing what long term use of the drug can do though.

Best wishes, Molly x