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Old 11-17-2002, 07:31 AM   #1
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Post Seizure type, Dilantin question

Hello. I have just been discharged from the hospital near me on Dilantin. Originally, I was given a double dose (600 mg). What brought me to the hospital was a left-side droop (including my face), the sudden inability to write or type legibly or walk without a limp, and trouble getting words out correctly. They had thought they saw something on the CT scan (enlarged ventricles, fluid, etc.) but then the neurosurgeon said I needed to follow it on an outpatient basis. He did say that there is a problem with the ventricular wall, that it is "not smooth." This, he said, could be causing the seizures. I don't always remember what happens during these, but I am told that there is a lot of jerking motion on my left side. The chart labeled them "complex seizures," but since I am awake most of the time, I believe they might be "simple partial seizures." Anyway, I am taking 300 mg of Dilantin at bedtime and will see how that goes. On the way home from the hospital, however, I had another "spell" and couldn't talk or write to save my life. It just came out garbled. I also tend to have a metallic taste in my mouth and smell rather strange, awful odors that no one else can smell. It also seems like bright lights really are hard on me now.

[This message has been edited by sekharp (edited 11-17-2002).]

[This message has been edited by sekharp (edited 11-17-2002).]

[This message has been edited by sekharp (edited 11-17-2002).]
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Old 11-21-2002, 01:18 PM   #2
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Hi. I'm taking Dilantin too. When I have a complex partial seizure it normally starts out with an aura. When I have that it's a deja vu. It's as if someone is talking to me and repeating the exact same thing I've heard everytime. It's also as if I am going down a tunnel and things are getting dark. I then have a seizure. For the seizure itself I don't remember what happens however people have seen it and I make a funny face and if people talk to me they've said I wave my hands as if to say 'Go away'. When I come out of it and if there are people around to talk to me I usually can't understand them. It's as if they are speaking a language that I don't speak. I also don't talk because I don't know what to say as I don't think I speak properly either. It takes about 10-15 minutes to be able to talk. It's been 5 months since I've had surgery for this however I do still have auras, maybe one seizure. I hope this helped you out.

 
Old 11-21-2002, 04:32 PM   #3
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Thanks for your help. On Monday night, I had a seizure where I lost consciousness, in the literal sense of the phrase. This time the "aura" was a headache. After lying down, I had some jerking of my left hand and leg, and then I don't remember much after that. I lost time and my mother had trouble waking me or getting me to respond. I think I yelled at her when I came out of it. My neurologist doesn't know what to think but my other doctor has taken me off work for now and told me not to drive. The neurologist wants me to have a 48-hour ambulatory EEG, so at least he is taking the next step. ... I am continuing to take the Dilantin and will see how my week away from home goes. Mornings are tough because I walk like a drunk gorilla -- arms swinging wildly and my whole body out of balance. I wonder if this is from my condition or the Dilantin. ...
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Old 11-22-2002, 06:15 PM   #4
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My son was given Dilantin when he had a seizure a couple months ago (he had the seizure because we had taken him off his medication because it was thought he might not need it anymore - his regular medication is Depakote). It was like he was a stroke victim on Dilantin - he could not walk, he could not pick up anything heavy, could not remember anything, it was horrible. After the Dilantin wore off, he was back to normal. You might want to look into different medications????

------------------
Mother of 15 year old son, Jared, born with Hydrocephalus and takes Depakote for seizures.
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Mother of 17 year old son, Jared, born with Hydrocephalus and takes Depakote for seizures.

 
Old 11-24-2002, 02:34 AM   #5
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Look into Keppra. This has worked fine for me.

[This message has been edited by Kelliecar (edited 11-24-2002).]

 
Old 11-25-2002, 09:39 AM   #6
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Question

Quote:
Originally posted by Utahmom:
My son was given Dilantin when he had a seizure a couple months ago (he had the seizure because we had taken him off his medication because it was thought he might not need it anymore - his regular medication is Depakote). It was like he was a stroke victim on Dilantin - he could not walk, he could not pick up anything heavy, could not remember anything, it was horrible. After the Dilantin wore off, he was back to normal. You might want to look into different medications????

Is there any way you could tell me what type of meds you were on when your son was born?

 
Old 11-25-2002, 05:12 PM   #7
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Not sure if you meant for me to answer your question - What kind of meds were you on when my son was born. I personally was not on any medication when my son was born - I do not have a seizure disorder myself. My son was born with congenital hydrocephalus which means they don't know what caused it....just a birth defect. His seizures result from the brain developing abnormally - a lot of people with hydrocephalus also develop seizures.

If this question was directed at me, I hope this information was helpful.

------------------
Mother of 15 year old son, Jared, born with Hydrocephalus and takes Depakote for seizures.
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Old 11-30-2002, 01:14 AM   #8
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When I was first diagnosed with epipepsy I was put on Tegretol. Couldn't handle that stuff, take a pill and 20min later I was sound asleep. I was switched to Dilantin and have been on it for 4+ yrs now. You won't get the full benefit from it until you reach the right blood levels. (concentration of med in the ol' blood stream) Depending, it can be a few days upto 2-3weeks to get to the right level.

Anyway, I switched from the name brand 'Dilantin' to the generic 'phynitoin sodium'. Wait until you have a Dilantin capsule explode in your mouth. NASTY! I'd rather drink gasoline, it doesn't taste as bad! The generic is a caplet inside of the capsule. Therefore if the capsule melts before you get it swallowed you don't get hit with that lovely flavor. lol Also if you have to pay for your meds it's much cheaper and works just as well.

So just hang in there, the Dilantin will start to work before long. By the way, I'm on 500mg (extended release) and take them all at once. I do mine in the mornings.

zat

 
Old 12-02-2002, 03:56 PM   #9
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Cool

Ask your Neuro Doc about Keppra.A little expensive
though I don't seem to have any bad side effects
from it
Peace
Pacemaker52

 
Old 01-01-2003, 11:48 PM   #10
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Hello there

I have been on Dilantin for 8 years now, dosage is 530mg daily. Ever since taking this medication i have suffered numerous side effects..short term memory loss, gum problems, slurred speech. I have been seizure free for the last 3 years which sort of compensates but i have noticed a deterioration in my writing, it has got so bad that i can't even write my own signature. I've heard that Dilantin is an old drug and that there are better ones available, should i change medication or suffer the side effects??
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Old 01-05-2003, 02:42 PM   #11
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Hi taff75, You can sure talk to the neuro to see if a change is possible. SOmetimes they do not like to switch when you have seizure control. It is up to you if you feel the side effects are disruptive to your life if you want to try a switch. You may loose seizure control while changing, but it may get back after awhile. Good luck, hope you can have good control and do better.
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