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hi,
im from n.j. im a w/m 58 y/o. im semi-retired. im trying to find info on the cereballer and dilantin on how you can find out if its the dilantin shrinking the cereballem. ive had epilepsy for 56 years. i drive and lead a normal life . im a [petemal epilepsy] lowest grade it goes.
 
Hello cat lover and welcome,
I took dilantin for the majority of the past 15 years. It really does a number on your body when used long term. I was taken off of it by my neuro because I was showing signs of poor kidney and liver function. I, myself, have not heard of it shrinking the cerebellum, but after reading your post, I did a little research.

http://healthquestions.medhelp.org/dilantin-long-term-side-effects

http://epilepsytalk.com/2010/10/06/dilantin-–-hero-or-horror/

Here are two different websites with articles/ posts about how dilantin will cause atrophy of the cerebellum, as well as osteoporosis and a laundry list of other horrible side effects.
 
The first link is for ordinary people like us to ask and answer questions - not a reliable source of scientific evidence.

The second article in no way says dilanitin will cause brain atrophy; it says may. HUGE difference.
 
Hi Cat Lover and welcome,

I'm happy to hear you're seizures have been controlled for all those years. Wish I could say the same. Years ago, Dilantin was one of the first meds I tried, but it didn't do a thing for my seizures. My seizures stem from deep in my hippocampus, and there is definitely shrinking in that part of my brain, but not from the meds, but the seizures themselves.

In the long run, all meds do have side effects.
 
Based upon some of the reading I have done, if one part of the brain shrinks, another part of the brain can "grow into it." This is also true of brain tumors whereby certain parts of the brain can be displaced as a result of a tumor, which puts pressure on adjacent parts of the brain.

Read some of Zoe's posts on this forum. Her story is remarkable to me. Parts of her brain were removed, and yet she is able to function.

The good news is that new connections can be formed in healthy parts of the brain even if one part is failing or shrinking. The key to this is usage, much like muscles in our bodies atrophy unless they are used.

The tissue of the cerebellum is different than other parts of the brain, but I think the same logic applies.

The same principle holds true for paralyzed individuals. The best progress is made when individuals intensely exert themselves to get better. Again, Zoe is a good example of this.
 
Cat lover,
I have not done extensive research on this, just a little. When I posted the two links earlier, they were just on the first page of a Google search. But, the second link's article uses a Wikipedia page as a reference:

https://en.m.wikipedia.org/wiki/Phenytoin

The Wikipedia article uses a reference. (16) I believe:

http://www.seizure-journal.com/article/S1059-1311(02)00267-4/abstract

Which has some interesting reading. It seems like "Cerebellar Atrophy" or "CA" has been documented via MRI imaging in individuals with epilepsy who are taking Phenytoin (Dilantin) long term and compared to individuals with epilepsy who were not taking Phenytoin. So, although the links I initially provided were not directly scientific data, at least the second one was based on what appears to be real data. I am in no way saying I am an expert, or have extensive knowledge, just trying to provide some interesting articles/ data on the matter. Hope this helps you out a little more
 
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hey cat lover -- welcome!

I was on phenytoin for only two years. My neuro was mostly concerned about the long-term risks for osteoporosis, gum overgrowth and peripheral neuropathy (loss of nerve sensation) so she recommended a switch. But cerebellar atrophy also seems to correlate with long-term exposure to phenytoin (see http://www.ncbi.nlm.nih.gov/pubmed/12810345 and http://www.ncbi.nlm.nih.gov/pubmed/10849627) so it's worth discussing with your neuro. I think if you are on any med long-term, you and your doc should definitely be on the lookout for any side effects associated with that med.
 
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