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Posted by Barb on April 08, 2000 at 18:28:13:

In Reply to: Re: Effects of long term use of Dilantin posted by Eric on September 12, 1999 at 18:45:35:

:I feel for you and the the fact you cansee how good your life has become. I am not a doctor, nor do I pretend to know much about epilepsy. I have had it for 33 years now and have tried many medications. I started out on Dilantin and changed many times because my seizures increased. I wasn't until 13 yrs. ago I was introduced to another med in the Dilantin family, but stonger and have lived with know seizures since. I now drive and work like everyone else. Now the downer, they have stopped producing the med I take and I have to go back on Dilantin. I think the manufactors should somehow be held responsible for for our help. I have been in contact with them and many pharmacies to try and find enough of my medication to at least make a transition, but am not having a great time. I would stay on the Dilantin if I wasn't having any problems know matter how long you have gone without a seizure. Only a person who doesn't have a normal life would understand why you want to do this. More powere to you and your wife for your decisions. I've been taking Dilantin most of my life. My
: seizure disorder started from a brain damage from
: an auto accident as a child. I was first of all
: was under other medications to help in keeping
: control of my nervous system. Eventually the doctors
: switched me over to the two medications, Dilatin
: and Mysoline. During the mid 80's the doctors
: took me off Mysoline from going without any
: epilepsy for so long.
: Then in the late 80's the doctor wanted to take
: me off Dilantin. My mother got three opinions
: from neurologists outside this doctors clinic.
: Eventually after looking over the blood test etc.
: they all said, "Absolutly Not!"
: Right now at this present time, my wife and I
: are involved with another doctors clinic.
: Just two weeks ago our family doctor asked how
: long it's been since the last seizure I've had?
: I told him it's been up to if not over 25 years.
: Now he's telling me that I could probably get off
: the Dilantin. Well right now my wife is helping me
: set up an appointment with another neurologist to
: prove to the family doctor how unsafe it's might be.
: Right now I'm function beautifully. I'm keeping
: a very cautious eye on my gums. So since I'm
: not having any problems or other side effects from
: being on the medication, then why get off.
: If I were to take the risk of saying, "Yes, I'll
: try getting off the medication," it would be the
: biggest mistake in my life. Why get off the med-
: ication when I already know the possible permanent
: side effects that could result to me from my
: nerves not receiving the medication. I already
: know of enough people who got off the medication
: with or with out the doctors supervision and
: resulted in anything from speech impairment,

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