acceptable level of dilantin

[marymackay]

can 20 years on dilantin after one seizure, then a stroke with no speech, cause terrible sideeffects?

[DrNoopurMD]

Hi,

Thanks for writing in.
Usually a seizure free interval of 2 years is considered enough for discontinuation of seizure medication.
Dilantin after prolonged use results in lowering of folic acid levels leading to megaloblastic anemia; it can also cause nystagmus, signs of cerebellar problems like ataxia. Apart from these it can also cause swollen gums and lips and easy bruising and bleeding.
Hope this helps!

[marymackay]

Thanks very much for your comment. That is what I thought. After 11 years on dilantin after the one fit, as drs said be on it infinatum, I had a second stroke- no speech. I had to get my medical records from our local hospital, and they show that at that time the dilantin level was only 2, was on 230mg a day.

9 years later, I was finishing my PhD, and felt as though might have another stroke, visual and other problems. Local doctors or hospital did not check dilantin levels- thought I had mental problems. Took them 20months after many more drugs to discontinue the dilantin.

Then so many symptoms began for 3 years now- lupus, sjogrens etc so on Plaquenil  for this year , and seeing connective tissue, dermatologist, renal specialists, nerve conduction, and vascular physician next month- none of these in our city, have to fly away.
So thanks for your answer, I kept telling them to ceses the dilantin, as I'd read about effects- of course gums terrible, big gumball, lips as well as typical lupus/aps symptoms.