When is driving safe for someone with epilepsy?

@tchandos
Personally, I wouldn't mess with his meds. If he's been seizure free for 2 years why would you change his meds. If decreasing his meds I'd wait at least 6 months and preferably 1 year depending on his neurologic exam, EEG & MRI and the consistently of taking his meds.
Take care,
Jake

@jakedduck1

I agree with you on the situation. Very recently my neurologist’s PA and I decided that although I probably would continue to be seizure free with a lower AED dose, we know my current medication dose works and not to change anything. On my side, the side effects of the medication are worth being able to drive.

Also good to look into state law regarding medication and epilepsy. Some states are very specific regarding medication changes and driving restrictions.

@jakedduck1 oh because I trust his medical team and that is what they feel is best and I agree.

@methel I actually did not post this to defend the choices of my sons neurologist, who is waaay knowledgeable than I. https://www.mayo.edu/research/faculty/noe-katherine-h-m-d-ph-d/bio-00028130
And the decision was NOT made lightly. He had a sudden onset at 17 and we would like him to be able to live his life to the fullest while managing his disease.

As far as the law goes, he could still be driving. (Picture attached) It was us out of an abundance of caution who decided for him not to drive.

I guess the question I should have asked is, how long before you know the transition is complete when changing meds.

Tracey

@tchandos Jake (@jakeduck1) is absolutely 100% correct relating to the meds. I agree with his comment as to preferably waiting a year subject to future tests. Many years ago, I had a seizure while driving and was fortunate to have a passenger in the car who saved my life. Also, @methel is spot on relating to different state laws relative to driving. It is not only your son's life but others as well that needs be considered which I'm sure you are aware and rightfully concerned about. In NJ, the neurologist had to sign off for the DMV as to when I was permitted to drive. On the right meds and correct amount, hopefully he will be under control. I've been seizure free since the 1970's and still on the same meds. Wish you and your son the best!

@tchandos

If the question is how long to wait to know if the transition is complete, I think the answer is like so much in life, one may never know for sure. One listens to the experts and checks the relevant laws, but there are no guarantees. I’ve been seizure free for 8 years, but I am always aware that a really bad night’s sleep or too much caffeine or a missed dose of medication at the wrong time could make me seize.

My doctor wants me to discontinue my phenobarbital because of ataxia. But if it's not broken why fix it.
Is he having bad side affects?
I know you have a lot of confidence in your Neurologist, but if he happens to have a seizure, it's not the neurologist who will suffer the consequences?
Jake

@tchandos

I should have added in my last response that there have been statistical studies on the likelihood of another seizure occurring in an individual or population. Maybe someone here knows more statistics than I do and will be willing to explain what data are considered in predicting seizure activity.

@methel
I don't believe that anyone can predict a seizure.
I don't liveling life according to statistics.
Status epilepticus has a low percentage too but I have been in numerous induced comas from them.
And I've known people who have died from SUDEP (Sudden Unexpected Death in Epilepsy)
which also has a low percentage occurrence.
In my opinion, even the best doctors are at best gambling. Your son won't have more seizures.
Jake

@jakedduck1

I think of it as a numbers game. What are the odds of a seizure at any given time? The chance of a seizure is higher for someone who has had previous seizures than for someone who has never had a seizure. I look at it that taking the meds and avoiding seizure triggers shift those odds but never reduce them to zero.