Has anyone gone off of Dilantin and if so how long was it before you had a seizure if you had one. I know the Dr. said I would have to give up my DL for several months and I am not sure I want to do that especially if the seizures generally come back. Thanks.
Stopping Dilantin
- Thread starter DH47
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When I tapered off Dilantin, it took about two weeks -- the standard half-life of Dilantin -- before I had seizure again. And yes, I had to stop driving for 6 months.
There are no absolute predictors of whether you might remain seizure-free if you taper off medication. Have you only had one seizure? Have you been seizure-free on meds for at least a year? Did you have a clear EEG? Those are reasons why it might be worth considering the taper -- under your doctor's supervision. You could also ask about reducing the Dilantin dose slightly and then having an EEG done; if the EEG was abnormal, that would tend to suggest that you'd be safer staying on the meds.
There are no absolute predictors of whether you might remain seizure-free if you taper off medication. Have you only had one seizure? Have you been seizure-free on meds for at least a year? Did you have a clear EEG? Those are reasons why it might be worth considering the taper -- under your doctor's supervision. You could also ask about reducing the Dilantin dose slightly and then having an EEG done; if the EEG was abnormal, that would tend to suggest that you'd be safer staying on the meds.
I was taken off my Dilantin in late 1993 to undergo "Epilepsy Monitoring" to find out if I was a candidate for epilepsy surgery. I had seizure after seizure within one to two days and just kept wanting to die. I have auras and I remember calling out and saying something like, "here comes another one!" That was awful for me and a few years ago when they wanted to take me off Dilantin and put me on Kepra I said no! I don't want to go playing around with my medicines now at this time in my life. I'm 62 and I've been on Dilantin since my pre-school years and it"s always been a good drug for me. That's my experience and BTW, I had the "epilepsy surgery" and it worked for me but not completely as I still have nocturnal seizures but I can live with that.
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I was able to go off Dilantin after 34 years at my own request in1996 and I didn't have any problems with sz's. I also took Tegretol and Tranxene also.
Is Dilantin the only drug you take?
Is Dilantin the only drug you take?
HorseFetherz
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Did your doctor give you a reason for going off Dilantin? It's been around for a long time and works well for many, but there are also a lot of newer AEDs to consider if side effects become an issue. I've been on Dilantin for 36 years, but my docs were concerned about what it might be doing to my liver for such a long time. So they slowly dropped the Dilantin dose down to half, and added topiramate. An extra seizure or two, but a much healthier liver in the long run. Good luck with whatever you decide to do!
Hi HorseFetherz,
The reason for me coming off Dilantin was only temporary because I was about to undergo "Video Monitoring" to find out if I was a candidate for "epilepsy surgery." I had to go cold turkey off all my drugs so that seizures would happen so that that they could see what happens when I have a seizure and they also did an EEG. Even though I have tried oher drugs throughout my life, Dilantin has been the one consistant drug that I've been on since 3-4 years of age. I still remember taking it at age 4. I'm now 62.
Many years ago a doctor did tell me that I may end up with an enlarged liver because of all the drugs I take - good point, maybe I should get it checked out.
BTW: I was a candidate for epilepsy surgery and I had it but it wasn't a complete success. I still have nocturnal seizures about every 1-2 months and am sometimes incontinent, but I've been that way all my life too. I can drive now, great stuff - got my licence at age 47.
Thanks for you question and I'll arrange to get my liver checked this week when I see my doctor.
The reason for me coming off Dilantin was only temporary because I was about to undergo "Video Monitoring" to find out if I was a candidate for "epilepsy surgery." I had to go cold turkey off all my drugs so that seizures would happen so that that they could see what happens when I have a seizure and they also did an EEG. Even though I have tried oher drugs throughout my life, Dilantin has been the one consistant drug that I've been on since 3-4 years of age. I still remember taking it at age 4. I'm now 62.
Many years ago a doctor did tell me that I may end up with an enlarged liver because of all the drugs I take - good point, maybe I should get it checked out.
BTW: I was a candidate for epilepsy surgery and I had it but it wasn't a complete success. I still have nocturnal seizures about every 1-2 months and am sometimes incontinent, but I've been that way all my life too. I can drive now, great stuff - got my licence at age 47.
Thanks for you question and I'll arrange to get my liver checked this week when I see my doctor.
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