Dilantin

[JoeP]

I have been on Dilantin since I was 13, my last seizure was in 1993. My wife is worried about me being on this for so long as it is possible to cause liver damage. My thoughts are, I have my blood tested every 6/mos. and it always comes back ok. Is anyone else on Dilantin and having any issues. I am meeting with a neurologist on the 14 in Sioux Falls South Dakota and am kinda worried he may want to take me off of it. I have been seizure free for so long and my wife has never seen me have one nor my kids and I do not want them to see it. But let me know any thoughts about the Dilantin and side affects anyone may be experiencing.

[Meetz1064]

on Dilantin for about 35 years, with very few side effects. I was taken on and off of it for various reasons, but really, the only side effect that I suffered that I can recall, was bleeding gums. And for me, flossing only made that WORSE, NOT BETTER.

I was on Phenobarbital and Dilantin the first 18 years of my life, then the mix of college life, and the 2 of them caused the drugs to go haywire--pretty much toxic--and I was hospitalized for a few days. I was taken off then, for a while, but put back on a couple years later, and stayed on for a long time.

So far, I have no liver damage, and I've been on plenty of meds. *coughing*

And trust me, I've been poked and prodded enough to make anyone want to scream.

The best thing you can do at this point is to come clean with your wife and the neurologist about your feelings. As long as the blood serum levels are good, then leave things alone--if there is still activity showing up on the EEGs. For those who have never seen a seizure....it can be scary, but it can be educational as well......

[Birdbomb]

When I had my first seizure in 2001, I was put on Dilantin. By the end of 2004 I was seizure free I weaned myself off and stay seizure free until February of this year when I had my second tonic clonic. Now I'm back on Dilantin at a higher dosage. Due to several other medical problems I take a huge cocktail of medications daily and must have blood work done monthly. One med I take builds up in the eyeball and most of them do cause liver toxicity. So far none of them have caused me any major problems. I have yet to have any problems with the Dilantin other than, stuff like balance and aphasia. There are a few members here with very significant problems with Dilantin.

[Nakamova]

It's your call (not your doc's) whether or not you stay on the Dilantin. If tests come out clean for any of the long-term side effects, and you'd rather not worry, then you can stay on it. A friend of mine has been on phenobarbitol for over 30 years -- the docs keep asking her if she wants to go off of it, but she's stable, has no side effects and doesn't want to mess with success. If you decide to try going off the Dilantin, I recommend weaning off very slowly, over the course of 6 months (rather than the standard two to four weeks). It can't hurt, and it can very likely help.