Have AEDS effected your gait?

[RanMan]

I've been on Dilantin and phenobarbital for 37 yrs. and one of the long term affects is how it's effected my "gait" and how I walk.
I've noticed that I walk with my legs spread slightly apart and my head is always down (otherwise I feel as if I'm going to fall or lose my balance) or I can't look up or turn my head around without holding on to something.

My Neurologist says it's from the "LONG TERM" use of the meds. but they are controlling my seizures.

The other alternative is to switch meds (which my Neurologist is totally against ) which COULD cause more severe and frequent seizures, COULD cause lower brain stem damage and I would have have my drivers license revoked until I go another 2 yrs. seizure free.

Another reason not to change meds after this long is the fact that many of the "new" AEDS haven't been around long enough for studies to be done on it's long term effects.

I just don't feel that it's worth the gamble. It might cause more harm.
(this is just MY opinion).

Randy

 

[Porkette]

Hi Randy,

Sorry to hear you are having a few problems after all these yrs. I understand where you are coming from. I've been taking mysoline (primidone) for over 30 yrs. only to find that it has caused me to have frozen shoulder and now heart problems which lead to more seizures. I went off the mysoline awhile ago and the Dr. couldn't control the seizures so I went back on it again. I have found the older seizure meds work better for me than the newer ones do. I know if I were in your place I would stick to the phenobarbital but that's just my opinion. Here's wishing you well and May God Bless You!

Sue

 

[masterjen]

RanMan - what you described sounds like a condition known as ataxia, and it is a common side effect of many anti-seizure medications.