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Old 01-20-2003, 07:04 AM   #1
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MntnHeathr HB User
Talking Long term effects of Dilantin

I am new to this website. I have been diagnosed with Epilepsy for 10 years. I started having seizures at 18 years of age. They were able to find the cause of my seizures. At my second birthday (which I actually remember) my neighbor was pushing me on my new tricycle and she pushed to hard and I fell backward and hit my head on our concrete basement floor. This bruise apparently had been laying dorment for 16 years until one day something triggered something, and I had my first seizure. This has been a difficult journey for me. My Dilantin has controlled ALL seizure activity, but at what cost I can only imagine.
I was in college when this happened and on the dean's list. I know IQ does not matter, but mine was 157. Within a few months my severe headaches and mental confusion had ruined my near perfect GPA and I lost my scholarship. I flunked out basically.
After this I was determined to get off Dilantin. I was unsuccessful. Now I am looking back at the last ten years of my life. I had my first seizure today ten years ago, and I feel like I am not me. I look back at the person I was and the dreams I had. I remember when I was sharp as a tack and could match wits with the best of them. Now, I am the last one to laugh at a joke, and I may not even laugh until a day or so later.(That is embarrassing) I remember my memory was perfect and served me well. I remember when I could concentrate for longer than a few minutes, when I could sit down and do anything, and I mourn that person. Now I cannot complete many sentences. I just lose interest in talking halfway through the sentence and quit. I cannot do more than one thing at a time, and don't hand me two problems to deal with at once or I will shatter. I space out probably 20 or more times a day on a good day, and it drives my family crazy. If you here someone calling Heather! ten times in a row, it is not a parent calling their child it is me, probably! I found this website because I was trying to find out if any studies have been done on the long term usage of Dilantin and found through these web sites that what I am experiencing isn't even written about. I thought for the longest time that I was in the beginning stages of Alzheimer's Disease. My mind is empty. Ever heard the expression, "It hurts to think"? That is me all over. Things just don't occur to me like they used to. I am slower in thought and deed, and since I can remember the way I used to be, I frequently wonder about this drug. My seizures were horrible, and I hurt myself, and I am glad that Dilantin has taken them away from me, but I just wish I could get a glimpse back sometimes at the girl I used to be. I wish I had some encouragement that she was still in here somewhere, lost in a maze of deadened neuro-transmitters.
Besides all of this, I am happy. I know I will never be able to do the things the 18 year old in me wanted to do, but what scares me is that doctor's aren't even aware that this drug can produce long term effects such as these, and they happily continue to prescribe this drug.
My mother told me to quit my bellyaching and get on with life, because being slower than most was better than being confined to a wheel chair and drooling all day. I agree she is 100% correct. I am very glad I found this web site. If you know where I can get information on the long term effects of Dilantin please let me know. I am still searching for answers.

 
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Old 01-21-2003, 06:52 AM   #2
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kipp77 HB User
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I have been taking dilantin for over twenty years, and I am still as dumb as I was twenty years ago! Actually, I was diagnosed when I was nine, and now I am a "Rocket Scientist". I train astronauts how to fly the Space Shuttle at NASA Johnson Space Center.

The only really bad side effect I've had from dilantin is my teeth. I've only got 14 left!!!!!!!!

I am not a doctor, but I think the dilantin will not damage the cookoo clock. <just trying to get you to smile>

Have a nice day.

- kipp77

 
Old 01-22-2003, 07:27 AM   #3
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kayakmom HB User
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Kipp Thanks for your reply! My son loved it. Just went to Kennedy Space Center and your comments really tickled us. Thanks for the encouragement that folks with E can acheive anything they set their minds too....
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Old 01-22-2003, 11:00 AM   #4
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The only side effect I have as well is with my teeth. When I brush them my gums bleed and they are sore. I make sure I brush twice a day and also use that Oral-B mouth rinse that helps.

 
Old 01-22-2003, 02:03 PM   #5
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Alyssium HB User
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Liver problems can occur. Jaundice and such others. I got off Dilantin less than after a year I had been put on it. It didn't control them anyway, so no way was I going to take that stuff, it made me feel depressed most of the time.
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Old 01-26-2003, 10:27 AM   #6
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Elleigh HB User
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hi-
i have been on dilantin for 27 years, my teeth. i have problems with. but i have crown and a GREAT smile. never got to my memory. i used to be witty and sharp until after my brain surgery. i cried a lot. i would return to my desk and think - how could i have forgot what my boss just told me 5 minutes ago to do. i was fired. i just kept going. i have a wonderful 20 yr old son, i work. i surf a lot.(as long as someone is there to watch me) i don't drive . they have never been able to control my seizures. i have about 1 a year. i can deal with that. i have grand-mals. other than that. i am wo i am, very happy.

 
Old 01-26-2003, 11:51 AM   #7
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Elleigh - What type of brain surgery did you have? Where did you have it at? Were they able to find a focus or how did they go about figuring what part to take out? Did you know the surgery was going to affect your memory - did they tell you that ahead of time? The doctors are now doing all tests necessary in anticipation of surgery for my 8 year old daughter. To say the least, I'm extremely frightened for her. What other effects did you have? Any info you can provide would be greatly appreciated. lazoo

 
Old 01-29-2003, 09:38 PM   #8
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ms. bunny HB User
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Mntnheather- My husband has been on Dilantin for as lng as I've known him (11 years), and I don't beleive it has affected his mental function at all. From reading the other posts on ths site, it looks like it could be another aspect of your particular case. You should talk to your doctor, and if his answer doesn't satisfy you, then get a second opinion. Good luck and remember perseverence pays!

lazoo- I went to school with a guy who had surgery seperating the lobes of his brain when he was a child. This was due to epilepsy of course. He brought in pictures of the procedure, and it was quite interesting. By the way he was an honor roll student, and on the track team, so hopefully this may calm some fears you may have for your daughter. Good luck to both you and her!

 
Old 01-29-2003, 10:03 PM   #9
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Ms. Bunny - Thanks for the reply. Love to hear the success stories! lazoo

 
Old 02-08-2003, 10:50 PM   #10
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bilbostuff HB User
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I think the gum and teeth thing would be the only real problem I have produced from the Dilantin. I am 42years old, and have been taking the stuff for about 22 years..I am a student at the University of Phoenix (ok I am a late bloomer) and my GPA is 3.98 out of 4.0..I believe my noodle is still going strong, and maybe even better than ever...One very strong belief I have is that the brain is a muscle is like any other one..if you do not use it, you will lose it...
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Old 02-12-2003, 04:29 PM   #11
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MrsPepper HB User
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Elleigh-I can certainly relate to the surgery problems. I also have a lot of memory problems now. Someone tells me something and I also forget very quickly. I know I annoy people somewhat as I may ask the same question over and over and have no memory of ever asking it. I've also forgotten a lot of words. Food, animals, people, you name it. I'm a stay-at-home Mom right now but am very very worried about going back to work. I will admit though that I had very bad depression for about 2 months after my surgery but thankfully I have improved greatly. I don't know when you had the surgery but I sincerely hope you're doing well. It's certainly a downer when the surgery doesn't work.

 
Old 02-13-2003, 09:24 AM   #12
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Kipp77, I would just like to offer my condolences for your loss at Johnson and in the NASA family. May God be with you. ...

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All of us has an angel, if only we know where to look.
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