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Trying to get off Dilantin

Thu, 01/26/2006 - 11:28
I'm trying to replace Dilantin with some other med that will have less side effects. The doctor tried Lamictal and it didn't work. Then I found out it wasn't really indicated for grand mal seizures. !#%!! Now my doctor wants to try Depakote. Can anyone give me some insight on changing drugs? Should I just stick with Dilantin because all these drugs have side effects that are just as bad? Thanks

Comments

Re: Trying to get off Dilantin

Submitted by kdm on Mon, 2013-01-14 - 21:53

Thanks for the info. I was really tricked by my hospital doctor who told me I needed to take Dilantin or else loose my life. I took Dilantin for five days but when I read on the internet about strokes that led to future epilepsy didn't say anything about epilepsy leading to death. I know the hospital wanted me to be released as soon as possible since I didn't have insurance.

While on Dilantin for five days I was only capable of sleeping 12 hours a day and watching tv 12 hours. Three hundred mg of Dilantin had me zonked out on drugs. I'm getting off now and will return to a normal life. If I have to deal with some esisodes of epilepsy I will learn how to deal with them properly.  In no way was taking Dilantin worth all the side effects and the liver danage possible after a while.

Thank you all very much for your experiences with Dilantin versus epilepsy. 

Kdm

 

Thanks for the info. I was really tricked by my hospital doctor who told me I needed to take Dilantin or else loose my life. I took Dilantin for five days but when I read on the internet about strokes that led to future epilepsy didn't say anything about epilepsy leading to death. I know the hospital wanted me to be released as soon as possible since I didn't have insurance.

While on Dilantin for five days I was only capable of sleeping 12 hours a day and watching tv 12 hours. Three hundred mg of Dilantin had me zonked out on drugs. I'm getting off now and will return to a normal life. If I have to deal with some esisodes of epilepsy I will learn how to deal with them properly.  In no way was taking Dilantin worth all the side effects and the liver danage possible after a while.

Thank you all very much for your experiences with Dilantin versus epilepsy. 

Kdm

 

Re: Trying to get off Dilantin

Submitted by scarolinus on Thu, 2013-01-31 - 20:17

Having been on and off Dilantin for most of 45 years I can sympathize with everyone's concerns about getting off of it. It has pages of side effects, is tricky to get the dosage just right, and is the gold standard against which all other anti seizure drugs are compared.

What it all boils down to, however, does Dilantin do the best job of seizure control for you and do you have problems dealing with other medication? That is a decision that you and your neurologist have to make.

For me Dilantin has been the most reliable med that I've taken in 45 years. I've never experienced any side effects except when I switch off and then back on again.

For those of you who haven't found your best med yet, keep trying. Just don't drop a med without medical assistance.

That is a potential trip to a grave

Having been on and off Dilantin for most of 45 years I can sympathize with everyone's concerns about getting off of it. It has pages of side effects, is tricky to get the dosage just right, and is the gold standard against which all other anti seizure drugs are compared.

What it all boils down to, however, does Dilantin do the best job of seizure control for you and do you have problems dealing with other medication? That is a decision that you and your neurologist have to make.

For me Dilantin has been the most reliable med that I've taken in 45 years. I've never experienced any side effects except when I switch off and then back on again.

For those of you who haven't found your best med yet, keep trying. Just don't drop a med without medical assistance.

That is a potential trip to a grave

Re: Trying to get off Dilantin

Submitted by mommy2kyra on Thu, 2006-01-26 - 12:49
Hi david, I started off on dilantin, and it didn't do anything for me (anything good, anyway). Depakote was added to my mix, and that did the trick. I was taken off dilantin, and had no problems. I have TLE, so my grand mal's are secondarily-generalized. Theoretically, if you mainly have partials...that may or may not secondarily-generalize...then a med good for partial seizures ought to work. Depakote is used for partial seizures as well as absence. You can read more about it on epilepsy.com Lord only knows what med will work for you, and what won't. Unfortunately, it's a guessing game. Dilantin can have some pretty crummy side effects that take a while to kick in, so I would try to switch if you can. Best of luck to you! Heather :)

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