Should I stop taking phenytoin,and if I do is the best way of preparing myself to do this

Posted , 2 users are following.

I have taking phenytoin since 1983. I have had 5 seizures,the last probably 14 years ago. But all appeared serious at the time,and I always ended up in hospital. I am scared of the consequences of having another seizure. However given I'd been seizure free so long,a year ago GP referred me to a Consultant Neurologist,who outlined some of the possible side effects,which previously I'd been oblivious to,and suggested coming off my dose very slowly ,and trying out with not taking anything. However he also told me my risk of having another seizure within 2 years was going to go up- from 11% to 24%. He kindly gave me a two year time limit to make up my mind about if I would come off or not . I have been trying to decide since,mostly not facing up to it ! However I have recently begun to experience tingling and numbness in my hands and feet,which may be one of the side effects. I'd love to hear from anyone else who has been taking phenytoin for a long time,and who has been advised to come off,and what they decided to do about it

0 likes, 3 replies

3 Replies

  • Posted

    Seen ppl taken off phenytoin. Managed well!

    Not my case though.. every 2/3 yrs I emboldened myself to discuss withdrawal, but beforehand always had one more episode, thus throttling chance of it...

  • Posted

    I know this will be a desision you will need to face, just want to encourage you my Wife as been taking 100mg Phenytoin twice daily for 50 years no bad side effects. her last grand mall fit was 1986 because she stopped taking the medication. we are not all made the same hope this helps you in some way God Bless
  • Posted

    absolutely!

    only it has for me made it critical in VIT-D

    smile

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