I am concerned that my husband who has been epileptic since age 11,has not had a neurologist checkup for 16 years,he is now 36. In that time he has been on the same meds which are Phenytoin (epanutin) and Epilim (sodium valproate)
virtually unchanged apart from his general practitioner increased his phenytoin from 1000mg to 1500mg a year ago as he has 2-3 grand mal fits a year,always
within half an hour of waking up.I thought blood tests should be done to check the drug levels or his liver,but the GP says its not neccessary.I am also concerned that the drugs he is on are old type and better ones are now available with less side effects. I know my husband is reluctant to change things
and stick with what "sort of works" as before this combination of drugs he was
having 15 grand mals a year and not well controlled.Any advice on this will be appreciated please,I would pay for private neurology care if it would improve matters (no neurologist in my region on the NHS)

~kay

Kay - I'm surprised that your general practitioner has not done blood tests. I'm on phenytoin as well and have that level checked every 6 months (more often if my weight or diet changes) and then a complete blood workup done to check for liver function once a year.

As for changing from phenytoin to something else, I know how your husband feels - better what you know than starting out all over again. But as kayakmom points out, there may indeed be something newer that would offer your husband more control.

If the meds were working ok... but that level of Phenytoin (Dilantin) is through the roof. I was only administered 1800 or 2100mg when brought into the hospital emergency on seperate times. The typical recomended daily dose is 300mg/day for adults. The massive dose the hospital administered gave me the side effects of the drug.

--Travis