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New to Dilantin and concerned
Tue, 08/01/2006 - 16:14Topic: Medication Issues
Hi All, I have been on 2500mg Keppra and recently I saw an Epileptologist. With my TLE not under control and bad side effects of Keppra he decided to change me to Dilantin and reduce/eliminate the Keppra once blood tests were up to theraputic levels. He himself has done research on Keppra and believes that Dilantin may be a good choice for me. I am very concerned because of what I have read about Dilantin. So far I am on 300mgs and little or no side effects except being tired a lot(seizures are reduced by 70% but still there. After blood test, my level was really low. On a positive note, the Dilantin immediately helped with the emotional side effects of Keppra.I would really appreciate any advice with anyone on Dilantin since all I have read about it, is quite unnerving? Thanks for any thoughts, Rita
Comments
Re: New to Dilantin and concerned
Submitted by KLMQH on Sun, 2006-09-03 - 08:32
I too am new to Dilantin. I had been on depakote for 13 years and was 6 years seizure free until June. My Dr. and I had decided to try and take me off meds, to no avail. As soon as I was completely off I had a seizure. We switched me to dilantin 300mg because of the liver side affects of depa. and because of the increased side affects of being pregnant on that drug. (Not now but soon) I have been on it now for almost 3 months, we had to up my dose to 400mg and I did have another seizure about a week ago. I am waiting for blood work to come back with my levels. I'm hoping that they are still just too low for me.
I have experienced a lack of energy and increased headaches since i have been on this. Its so hard to switch meds when one is working for you well but you are concerned about having children while on it.
I hope that you get to a good level for you, as I do the same for me. Keep me up to date on your side affects etc. while getting your body used to this med.
Kristin
Re: New to Dilantin and concerned
Submitted by westerday on Tue, 2006-10-24 - 12:03
i have been on dilantin for 8 years and it has been the only thing i have been on. trouble is, now i think it is terrible and evil, and if i didnt need it i would flush them down the toilet.
the good thing- it works for me ok- i went from a grand mal a week to a grand mal every other month, they are not eliminated, but controlled at least
the bad things- lots of things- i still get auras all the time, my memory is screwed up, i cried the other night because i couldnt remember my niece's name when i was talking to one of her teachers... i became pregnant and could not keep it because of the birth defects (but that is pretty consistent for alot of AED's i am finding), i have had teeth problems, my hair comes out in chunks in the shower,
i am having manic episodes,
and worst of all: weight gain.
i have gone from 130 to 260- and i am a vegetarian who exercises every day- which makes absolutely no sense for my weight to double in 5 years...
my doctor just put me on topamax to help me with the weight thing and said it should help as long as i slowly decrease the dilantin and work my way up to a good topamax dosage... i have never taken another AED before so i am nervous about it though....
i know dilantin works for alot of people, just not for me
Re: Re: Re: New to Dilantin and concerned
Submitted by angel_lts on Thu, 2006-08-31 - 08:30
I was having some sleep problems with Lyrica at least I thought it was Lyrica. I told my doctor and she said one thing Lyrica may do is help you sleep not keep you awake. Mine may have been hormone issues that I have been dealing with alot. It is possible the mix of the drugs could have done that too you. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/