Shrinking of the cerebellum

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

RanMan

RanMan

Too Much Experience with Epilepsy
Messages
408
Reaction score
0
Points
91
I have been on dilantin for 27 yrs and one major side effect that I've noticed is ~ shrinkage of the Cerebellum. When I lose my balance and fall to the ground, I find it hard to get up or if I want to get down on my knees, I can only go down about half way and then I have to let myself fall the rest of the way, then I find it hard to get up (Cerebellum controls motor functions).

This is also why my balance and gait are getting worse.
Anybody else experiencing the same type of problems?

Randy
 
Randy,

I found this old post and it caught my attention. I was on Dilantin for 19 years and my neuro wanted me to get off of it because of the possibility of a shrunken cerebellum as well as osteoperosis. I don't know that I have experienced the same side effects you are describing ( I've been off Dilantin for almost 7 years) but I was warned about them. Is there any other med combo that will work for you?
 
Blessed said:
Randy,

I found this old post and it caught my attention. I was on Dilantin for 19 years and my neuro wanted me to get off of it because of the possibility of a shrunken cerebellum as well as osteoperosis. I don't know that I have experienced the same side effects you are describing ( I've been off Dilantin for almost 7 years) but I was warned about them. Is there any other med combo that will work for you?
Click to expand...

How much Dilantin were you on Blessed?
 
I was on 300 mg. Dilantin for most of those 19 years. During each of my pregnancies (3) I took 260 mg. Not a big difference I know but I felt better taking as little as posssible when I was pregnant. I have 3 strong, healthy boys today with no birth defects from the Dilantin. I did, however deliver my last 2 sons prematurely. (They're doing great today!):) My OB was not sure if there was a connection to the Dilantin or not.
 
shrunken head

Oh boy. That does not make me feel good. I've been very good about taking my 300mg Dilantin / day and am experiencing seizure reduction. I also need to work more on the "no sugar" and "low carbs" diet. Things are going well. moderate exercise is helping, as are hormones, stretching and my diet.

I hope I can get off my medicine before my shrunken head is displayed on a stake in the ground. :)
 
I was on Dilantin early so I can't remember the dosage, but when I saw a recent neuro he was looking at my records and threw a fit. He yelled that I should never have taken the stuff because I'm skinny (back then) blonde, freckled, small boned and was certain to have osteoporosis now.
He ordered that bone test and, sure enough, I had fairly advanced osteoporosis and I've been taking Fosamax since then. He says Dilantin is almost certain to cause bone damage.
 
Oh boy! My Neuros have done a
lot of Scans but never said anything
about any shrinkages and I had been
on -----> 400 - 600 mg
Dilantin / Phenytoin for ages!

:eek:

The only thing it did was wreck a havoc on
my teeth where my Oral Surgeon stated that
he wanted me OFF of it and on another AED
before he could perform surgery as there were
newer and better AED's out there.

I still call Dilantin the "Spare Tire in the Trunk"
something to fall back to in case all else fails.
 
You must log in or register to reply here.
Back
Top Bottom