http://www.healthboards.com/ubb/smile.gif 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 http://www.healthboards.com/ubb/smile.gif


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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).]

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.

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.

xxxxxxxxxxxxxxxxxxxxxxx

Hi ... Happy 2 http://www.healthboards.com/ubb/smile.gif

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 http://www.healthboards.com/ubb/smile.gif

HI,

Jake's in transition right now as well. He should be off Dilantin compltetely 7/19. Since he can't tell us his self... we're guessing... But, we have seen such an improvement the past 3 weeks. He's crawling and just going all over. He just acts like he feels good is the best way to discribe it.

He is still on Tegratol and Trileptal and hoping to come off Tegratol next. http://www.healthboards.com/ubb/smile.gif

What are you doing to help you stay off meds. We have made some pretty big changes as far as diet and use of over the counter meds. and it seems to help * Keeping our fingers crossed anyway * Let me know.

Thanks - and congrats on getting off the D. I know there are people who swear by it, but it's been hard on Jake and I'm thrilled to see it go!!

Lisa and Jake

Lisa and Little Jake,

I am so happy that he is going to be off of that med. You have been saying for a while that you didn't think it was any good! I am glad they are taking you (i.e. Jake) off of that terrible stuff. I can't believe that they had him on all of that at once? Did they or did they introduce a new one before taking him from dilantin?

Glad to hear it is getting better for you guys. My prayers are with you and your family.

KittyMom

I am switching from Dilantin to Lamictal, I can't stand the side effects of it (although I know it's different in different people).

Lisa, that's great that they are taking little Jake off of it! Poor little guy having to go through all of that at his age, it's hard enough on adults.

Amy

My wife and I were just at the Neurosurgeon today. She confirmed that Dilantin does cause Cereballar Degeneration or "shrinking cerebellum". My wife's mother was on Dilantin for years and is now disabled from the brain damage. She cannot walk without falling. My wife just had a seizure this weekend, and of course the ER put her on Dilantin. Fortunately the Neuro is switching her to Topomax. She said this will also relieve her Migraines, and has the added benefit of causing weight loss. Dilantin works well for seizure control but causes brain degeneration, weight gain, and loss of coordination.

Hi...My name's Jessica, pretty new here. My husband had a seizure about 2 years ago. We went to the neurologist...they can't find anything wrong with him. He had MRI's, cat scans, blood work, you name it, he's had it done. The only thing that showed up on his MRI was a very small leison on the outer surface of his brain. They said it may be putting pressure and this could be the cause. He started Dilantin, was fine for about 4 months, then had another seizure. Was a result of his Dilantin levels being too low. I guess my problem is, they have labeled him being epileptic without knowing the cause. He was discharged from the Navy because of it. Can't be on long term med's and active duty. Any knowledge would be greatly appreciated!

jessica i too am epileptic and still to this day they find no cause for my epilepsy they have put me through the ringer with tests and meds and i am still having seizures and still have no cause for them there isnt always a reason or a known cause for epilespy i have no family history of epilepsy any where in my family my grandmother traced our family tree back as far as she was able to and it isnt anywhere epilepsy is just kinda one of them weird things that happen to us unlucky few i guess i wish you guys luck http://www.healthboards.com/ubb/smile.gif

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mother of 3
ages 4,3,and 1
my pride and joy

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

I have been on Dilantin now for four years (430 mg) and it has been the best drug for my seizures (I have tried ALL of them). I have Right Temporal Lobe Epilepsy and although they know where the seizures are originating are unable still to pinpoint the focus so surgery is not an option for me at this time.
UH, you mentioned Dilantin causing weight gain? I never heard of that. I know some of the AED's do cause weight gain (Depakote for instance) but never Dilantin.

R

Hi All,

YES!!! Jake is coming off both Dilantin (7/18 last dose) and Tegratol (mid sept). Like I said earlier he did not tolerate the Dilantin well. He still had DAILY seizures until we added the Trileptol.

Jessica, we have been searching for a reason for Jake's E since Oct 02 and nothing really. This past week, I did find that there is a family thing that could be going on. I was so upset that no one told me until now. BUT all his tests other then the EEG comes back clean. A little boy at the neuros office told me that his E "just is what it is - no one knows"! I hate to hear that it may end your husbands career though.

I hear the Jakester - need to scoot. You are all in my thoughts and prayers.

Lisa and Jake

Has anyone every heard of Terret Syndrome being linked to epilepsy? My husband had these "twitches" when he was younger, his mom took him to the doc and they said it was all in his head, he needed to see a shrink. That was the end of it, his mom never took him. He has continued having these twitches to this day...well later in life he developes this "seizure disorder". His docs say there is no relation. My 6 year old son has now started the twitching, took him to the doc and they said he has the beginning stages of Terret syndrom. And cannot rule out that it could later lead to seizures. He has an appointment w/ the neuro mid Oct. I don't know what to think. One doc tells me there is no connection between the two...However Bryler's docs tell me that terret is hereditary.

Look up Tourette's Syndrome (I think that's how you spell it).

I did look it up, and I didn't find anything that would or wouldn't suggest that they are linked. Which is why I asked...sometimes experience tells more than books.

Try putting in keywords "tourette's syndrome with Epilepsy. It comes up with a list of hits.
You may be able to find some information there.

R
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