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Posted by Terry on December 02, 2000 at 22:46:20:

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

Hi Julie:

I had my first seizure 4 days after I graduated from high school in 1979. After all the testing was done, the dr. said I could have been under a tremendous about of stress due to my senior year and everything I was in. But they didn't rule out epilepsy, since my mom had it.

They put me on dilantin and I took it for about 2 years. They did a blood level once a year. I took myself off after I got married and found out I was pregnant. My first child was born in 1980, a month early, but no complications.

My second seizure happened when I went into labor with my second child in 1982. I was put back on dilantin. It's been such a long time ago, I don't really remember if I had any side effects. I don't believe I did, but my system is or can take high dosages with no problems. Anyway, my third child was born in 1984. No complications.

I continued with dilantin until around 1989. I changed doctors and due to the bad after effects of dilantin (gum disease, it makes your teeth weak) the doctor changed it. I cannot remember the name but it did not have the bad effects like dilantin.

During that time thru 1994, I had around 4-5 seizures. I changed doctors and she put me on tegratol in 1995. My last seizure was in April, 1995. I've been on tegratol since then and have had no problems. I work as an administrative assistant for the supt. of our school as well as raise 3 kids. One is in college and the other 2 boys are in high school. I drive and have had no problems. As long as I take my pills in the morning and night and try to get plenty of sleep (hahaha) I seem to do fine.

My kids, when they were little, were shocked the first time they saw me have a seizure. After it happened, I just explained to them that I had this problem that if I got too tired and worked to hard, I would have a seizure. I explained to them that it would look scary, but I was okay. They just needed to make sure that if I fell on the floor, to move all the furniture, tables, etc. so I wouldn't hit myself. Then, to call their dad, cover me up and let me sleep. Luckily I had the seizures when their dad was around except for one time, when we were on vacation in California. But they had already been trained to know what to do....the most important thing...DO NOT PUT YOUR FINGERS IN MY MOUTH. I will bite them off. I warned them at work the same thing. Just move stuff out of the way and leave me there.

Kids are adaptable. Don't hide your symptoms away. In fact, they are the best little helpers you can have. Mine worried more when they were younger...They would ask, "are you okay?" "Do you want me to come with you"? But it was just something they have had to learn to deal with...just like I did. I do everything I always did. It is not a handicap. It's a condition and something you will have to learn to deal with. Once your medication is in control, you should feel more at ease.

You should keep a log of when you do have seizures. For your records and if a doctor needs to be called. List the time, date and how long it lasted. And you will usually have a sore mouth for a couple of days. You cannot swallow your tongue but it sure will be swollen and bitten and it hurts.

If you should have anymore questions, I'd be glad to answer if possible. I'm not a doctor but I've had this condition for over 22 years and I will probably continue taking medication the rest of my life. Good Luck!

: i just found out recently that i have epilepsy. I'm a nerveous mess. I had a breakdown today about everything i'm sick of with this disorder. I'm on four hundred mg of dilantin and it makes me "drunk",i have to hold on to the wall when i'm walking,i shake, and i can't see straight or remember things. I realize that i can't drive for awhile but i need to know some information about this.

: what kind of lifestyle changes am i going to have to make in order to adjust to this?
: how long will the side effects of the meds last?
: how do i explain seizures to my very young children? 2/3/8 yrs old.
: and any information you could provide would be great.
: what about work? i can't work with all these side effects and not being able to drive??

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