cerebellar & dilantin

[cat lover]

has anyone dealt with the cereballer & dilantin side affects? i am. its a known side affect of dilantin to shrink your cerebeller [ brain part] that controls your balance & dizziness? just want to find out more info on it befopre i go back to drs. in oct.

thanks

 

[AlohaBird]

I'm sorry I don't have any first hand experience with that drug. This might give you some answers.
It seems to be pretty typical of what I found. There is definitely atrophy happening but the jury is still out as to if the atrophy is caused by the dilantin or by the seizures themselves.

http://www.ncbi.nlm.nih.gov/pubmed/8042924

Welcome, fellow cat lover.

 

[RanMan]

cat lover;
Re long term use of Dilantin:

First of all, I've been on Dilantin for 36 years.

My balance has been effected severely by this drug as well as my gait, short term memory and mood swings.
I'm constantly tripping and/or losing by balance, lost my drivers license about 10 yrs ago due to my poor judgement and jerky movements on the brake or eccellerator.

Constantly getting dizzy, can't look upward or to the sides without holding on to something.

Apathy was definitely happening and led to carpel tunnel surgery in both wrists about 10 yrs ago (my Neurologist says it's from long term use of Dilantin) and now I'm scheduled to have carpel tunnel surgery again, this time in both elbows. So it has shrunk my cerebellum, however, on the other side of that, it is 95% controlling my seizures and if I were to change MEDS, my seizures could come back, possibily more frequently and more severe.

Most of the new AEDs have not been out long enough to be tested for long term effects, it could be worse, that's the payoff.

 

[cat lover]

personally i dont think thats the major problem with it. i took a bad fall 2 years ago and i think thats what is causing my problems. not sure yet if the dilantin is causing it. thanks for the info. ill read it later

 

[Dignan]

I took Dilantin for 15 years, and my understanding of the possible Cerebellar Syndrome was from taking elevated doses for a long period of time. I thought that if you were at a relatively low dose and weren't taking other drugs that might boost levels in your system, then the risk for damage to the cerebellum was low.

Of course, like all of these drugs, individual results vary, and anything can happen for any given individual, so its difficult to say. I know when I took Dilantin, I was aware of the risk and brought it up to my doc, and made it a point to look for any apparent damage whenever I had an MRI.

I take Keppra now, and for me, I felt much less dizzy and more stable and clear minded on Dilantin than i do on Keppra. Also, I never had any issues with cerebellum issues show up in any way as result of my Dilantin use. But, that was my experience. So, it really does depend on the individual.

Wish you the best, and let us know what your doc says, but at a minimum it is worth sharing your concerns with your doc and getting him/her to focus on it and give you a well thought out opinion.