Seizure free for 7 years should I get off dilantin per md

[11antoinette]

My neurologist wants me off Dilantin because of bone loss and possible cerebella(sp) can develop - I have been taking Dilantin since I was a teenager - I am now 66 - my level runs around 13 - I take 330mg a day - I also take calcium 1200 with d3, magnesium, and multi vit. - I exercise and am getting back into weight lifting - been seizure free for 7 years - I don't want to have seizures again - what is your opinion

[Dr Sharma]

Hi there. You need to be seizure free for a minimum of 3 years before attempting to stop medications. This is done very gradually to avert any relapse of seizures. The physician may half the dosage for about 2 weeks and if you are stable may further halve it for next 2 weeks and gradually stop it. You need to be prepared for any possible adverse reactions. Our seizures may return, increase or worsen as you stop this. Your blood sugar may need monitoring esp. if you are a diabetic since phenytoin can affect your blood sugar levels particularly on stopping the medication.  Hence it is advisable to withdraw the drug only under medical supervision. Take care.

[11antoinette]

You do not have epilepsy or never had a seizure - you just don't hop on and off meds - are you suggesting that I stop taking a med that has kept me seizure free for 7 years, try another and if that doesn't work try another - been there, done that, don't want to have another seizure, btw, they are grand mal seizures - why are people so nonchalant -this is serious - I am very pro-active and I do not trust any md with this so I will research more, maybe talk to people at epilepsy foundation - thank you anyway for your time;)

[caregiver222]

Your neurologist seems to be making a reasonable suggestion. I would follow his suggestions. You can always go back on the medication.