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Posted by Tim on November 30, 2000 at 01:43:56:

In Reply to: new here with questions about epilepsy,lifestyle,and dilantin posted by julie on November 23, 2000 at 20:25:17:

I've been on Dilantin a few years and am regularly checking this board hoping for more information to help me deal with it. In my case it's for damaged nerves. Either way in it's process of blocking errant nerve signals it can readily numb tactile sensations, voluntary motor response, and mental function. When describing what happens I am vigilant in avoiding the reference to 'drunk' even though it does seem to apply, simply because of the negative connotation. Best to refer to it as instability, unresponsiveness, specific description of what happened, etc.
I believe that your body does become more accustomed to it over time. I know that blood levels are a serious consideration, all doctors know it and it is in the packaging documentation. Here's what I can tell you from experience. At times I must walk 'deliberately' in order to make up for my feet either not correctly sensing or reacting properly in the activity of walking. A dead give away is turning into a door way and bashing a shoulder because something didn't go quite right.
I would never bunch up doses if you get off schedule, never. Also for me if a dose is missed, the sensations are exactly the same as too much, I guess because the nerves' reaction to the absence of the Dilantin.
My first advice is not to be put off if docs say testing isn't neccessary or side effects are minor if you know better. Second, after a year of 100 mg capsules and serious problems I ran into a doc who switched me to the same dose but in 50 mg (children's) tablets. For me that cut the side effects dramatically. I can only figure that my body gust couldn't handle so much being released at once.
I don't want to sound foreboding, but will mention that I was originally started off at much more than 400 mg, knew I had problems, as in no depth perception, couldn't hold a pencil (or a thought) and tested at a level 40. This the nurse at the time said was 'zombie level'.
For the kids they take things about their parents very hard. The two things that seemed to help the most here are explaining and not leaving them in the dark. That's not necessarily when something happens, but when they ask or hint that they are worried and don't understand. The second is that they make a lot out of traditions and regularity. They seem to count doing something that they expect as routine to be reasuring. I'm not sure exactly which events but they often give some indication, even if it comes out as whining or even almost blaming when they see something missed. That's just my take on it after a few years of this.

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