coming off phenytoin

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SeriousStan - 01 Aug 2003 15:55 GMT

Can anyone give my partner and myself any advice about coming off
phenytion?She's been on it since the age of 6 and is now 48.She wants to
come off due to side effects like gum disease,slured speech and balance
problems.We are also worried about the withdrawl effects and possible
siezures which are,at present controlled.How risky is it?

Serious Stan

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Mary Fisher - 01 Aug 2003 18:10 GMT

> Can anyone give my partner and myself any advice about coming off
> phenytion?She's been on it since the age of 6 and is now 48.She wants to
> come off due to side effects like gum disease,slured speech and balance
> problems.We are also worried about the withdrawl effects and possible
> siezures which are,at present controlled.How risky is it?

You should be asking the doctor who prescribes it.

In my case I was weaned off it gradually, but under the supervision of the
neurosurgeon who prescribed it.

Mary

> Serious Stan

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Tappy Lappy - 01 Aug 2003 18:11 GMT

> Can anyone give my partner and myself any advice about coming off
> phenytion?She's been on it since the age of 6 and is now 48.She wants to
[quoted text clipped - 3 lines]
>
> Serious Stan

My wife was taking Phenotyn for 20 years, but when on holiday in
Spain went in to status and was admitted to hospital. While she was
in intensive care the neurologist tried her on Tegretol and suggested that
this was the drug to which she responed better. So far we haven't
noticed any side effects.
It took a couple years to find the best dosage, but she is down to one
seizure per year now.
As with any drug, changing the dosage, or even the drug itself is risky
so even though your doctor can offer advice at the end of the day
only your wife can make the decision. A question to ask is how would
a change of drug affect your wifes way of thinking? Would the worry that
changing drugs may bring on seizures, actually make her more prone to them?
Our thoughts are with you, and we sincerly hope it works out for you both.

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poetic 1 - 02 Aug 2003 10:42 GMT

my name is lance and i also may be in later
august be weaned off phenytoin and hospit-
alized. i had 5 grand mals in july,2003. know-
ing there is probably risk of seizures i really
dont think bothers me as i know i need to do
something different. anything is better than i
am going through. i usually maybe get 5 or
6 seizures a year the last years so something
is amiss. good luck to you. lance

http://community.webtv.net/mousy12/ladymychihuahuaandme

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SeriousStan - 04 Aug 2003 17:44 GMT

> > Can anyone give my partner and myself any advice about coming off
> > phenytion?She's been on it since the age of 6 and is now 48.She wants to
[quoted text clipped - 17 lines]
> changing drugs may bring on seizures, actually make her more prone to them?
> Our thoughts are with you, and we sincerly hope it works out for you both.

Thanks for that.So she didn't have to come off the phenytoin gradually?My
partners neurologist suggested a gradual withdrawal over several months.She
did this with phenobarbitone without a replacement until she came off it
completely,after which she had a seizure and was given sodium valporate.

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