Balance and Coordination

[RanMan]

Is anyone else having these types of problems?

I have a "seizure condition" (epilepsy). I've been on dilantin and pheonobarb for 44 yrs
and now, as a result of the long term usage of the MEDs I have severe balance and coordination issues.
This is just one of the long term side effects among others.

I can't walk straight (I constantly stagger when I walk) and trip very easily.

My manual dexterity and hand/eye coordination is shot.
My wife gets mad because I can't help her do up the clasp on her necklace and/or bracelate.

I know there's not much I can do about it but I'm getting sick and tired of everybody thinking that I'm a drunk and some ppl even think I have MS.

That being said,

The irony is that my seizures are 90% under control.
Any suggestions about how I may be able to overcome this problem?

 

[Nakamova]

That's a tough call. I had similar balance problems when on Dilantin, and scaling back the dose helped. But if you don't have 100% seizure control, that's probably not an option for you. I assume you don't want to try any new meds at this point. When was the last time you tinkered with the dose for either the Phenobarb or the Dilantin? Perhaps going higher on one and lower on the other would help.

 

[Dolores]

I've been on Dilantin for over 40 years. For the last decade, it has controlled my seizures. About 20 years ago I had serious balance problems just as you describe. Then one day, driving down a major interstate to work, I saw the car ahead of me become 2 cars and realized there was something really wrong. Silly me thought I had the flu. My doctor checked my dilantin levels and it was at 43 - Yikes! No, my neurologist never did talk with me about the side-effects of dilantin. Luckily we now had the internet making research much easier.

What are your dilantin levels? Do you keep track of them and your dilantin dosage changes if any? I finally learned to do that and what a relief to have 20 years of documentation to back up changing dosages. Even though my seizures are controlled now, every few years I tend to start overdosing on my Dilantin - I know its happening because of my loss of balance.

Talk to your doctor about this and see if you can drop down even a little on the Dilantin.

It's no fun losing balance & coordination or seeing double, especially if you don't have to.

 

[cawhitern]

Delores makes a great point about a possible Dilantin level that's too high. I had a similar situation where I had this crazy buzzing in my ears and my balance was off. Had my level checked and it was over 30. I now get my level checked every 3 to 6 months and I have a standing order for a level, just in case I feel like I may be high or low.
I've been on Dilantin for over 35 years and I'm getting ready to try Keppra XR. I'm completely controlled on Dilantin but, like you, I'm having some side-effects that are troubling and after talking at length with my doctor I've opted to try Keppra XR.
Lots of things to consider but I would definitely get a level checked if you haven't already.
Good luck!

 

[masterjen]

Looking at things from a different angle:
The best way to overcome something, or at least to become better at it, is to practice and train. What has helped me a lot is to do balance exercises, keep muscles and joints flexible and strong, and to strengthen my core.

 

[Belinda5000]

I'm on Tegretol 900MG a daybeen on it for 39 years and I couldn't walk a straight line to save my life

I also take Phenobarb 90MG a day I forget how long.

my sz's aren't controlled and will never be controlled.my sz control go's up and down it's 75-80% this is my guess.

I take meds for asthma,allergies,heart problems(afib)

just about all meds cause fatigue.

 

[cazzy12]

jeeeeeeeeeeze think this my problem have been on similar and same lenghth of time and started same problems