DILANTIN - DAMAGE OR NOT ??? - Epilepsy Message Board

BAHAMAS · 06-14-2003, 11:41 AM

I have been told that I have damage to my

Cerabellum - It showed up after 2 MRI's

( I was told that the damage was "possibly" caused

from medication ) .

I have been told that Dilantin "may" do further

damage . What I would like to know is , will Dilantin

make it worse - or might any drug . I am trying to get

some more opinion's about this , so I can make a

decision on what to do .

All the best BAHAMAS

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[This message has been edited by BAHAMAS (edited 06-14-2003).]

[This message has been edited by BAHAMAS (edited 06-14-2003).]

giupset · 06-14-2003, 05:22 PM

Dilantin has this effect (it's in a previous email). I was 28 and had an MRI - my neuro said my cerebellum looked like one of a 60-65 year old. It has effected my balance and coordination. Dilantin is most likely the cause of this.

mainecoon · 06-15-2003, 05:50 AM

I swear by Dilantin, because I've had extremely good luck with it for so many years. But I've known for some time that long term use can result in peripheral neuropathy. So when I was diagnosed with MS I began to suspect that the Dilantin is somehow involved. The diagnosis was made after many inconclusive tests. Only after a third LP showed results "consistent with" MS did the neuro settle on MS. When I asked of the possibility that Dilantin may be involved he dismissed it outright, saying the blood panel shows the level in my blood is not toxic.

Well, I know it isn,t. But that wasn't my question. My ataxia is severe, and I have difficulty moving my left arm and hand in certain ways. Could this be a lack of coordination brought on by peripheral neuropathy resulting from years of Dilantin use?

Thanks for the info on cerebellar shrinkage. I'm going to talk with my neuro about this the next time I see him.

Still, even if Dilantin use has caused this change what then? To stop taking Dilantin is probably not an option, considering how well it's controlled my epilepsy.

Happy2 · 07-03-2003, 03:07 PM

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BAHAMAS · 07-03-2003, 04:36 PM

Hi ... Happy 2

Thanks for your info . it gives me some hope .

I am presently seeing a naturopathic DR.

I wish very much to get of Dilantin & all medications ,

& so I am trying various alternatives .

If I am not able to get off medication , what

medication do you use instead of Dilantin ? , OR are

now off all medication & if so what do you take

instead ? .

Thanks BAHAMAS