3+ years epileptic, recently experienced breakthrough, conflicted about driving

[shamethellama]

Hello everyone,
I am a long time member, but I've never posted a thread.

My experience with epilepsy has been like this:

-6 total seizures, if I recall correctly, (maybe 7?) beginning at age 20 (Late 2011-2012)
-every seizure is a tonic clonic and symptoms are identical every time

• No aura or otherwise warning whatsoever

• Tongue bitten every time

• Post-ictal stage is consistently...well very post-ictal

• Extremely sore and tired

-The first seizure was very early in the morning and woke me up.
-Three seizures have been in the morning, shortly after waking up normally.
-One was later morning, while I was at my university taking a test (since graduated).
-One was afternoon, while in the library.
-I guess you could say that, save for the first seizure, every one has occurred in a state of high/increasing brain activity (i.e. heavy-ish thinking)
-MRI showed nothing abnormal; sleep EEG showed somewhat abnormal brain waves but my seizures were labeled generalized and non-causal.
-No history of epilepsy in my family. No traumatic head injuries in the past.
-Keppra failed to control my seizures and gave me temper issues.
-After finding the right dose (200mg 2x a day=400mg/day), Lamictal presumably controlled my seizures for 1.5 years.
-February of 2015, I had a breakthrough which I chalked up to a missed dose (perhaps 2). May of 2015 I had a breakthrough seizure again. I have not missed a dose since the February incident. This was a morning seizure. I had gotten breakfast and was sitting at my computer eating. Next thing I know, my brother finds me on the floor. The only thing unique about this time is that I smashed my head on the desk and got a nice black-eye, and spilled some of my cereal. A bit of humor to break up this story: Apparently in my post-ictal state, I picked up my cereal bowl, emptied the remaining contents in the sink, and filled it back up with water. I proceeded to drink out of the bowl as I would a glass. It was probably humorous to him, but my brother brought me a glass of water anyway.


I called my neurologist (today) after the May of 2015 incident. He upped my dose to 200mg AM and 400mg PM=600mg/day. He recommended not driving for a couple weeks. I live in CT, the laws of which do not require the physician to report a patient with seizures. I am amazed that he is so eager to permit me to drive so soon, though he said the same thing while increasing my dosage of Lamictal in response to a seizure two tears ago, and I figured he knew what he was doing. This time, I am more wary. I was, and am, ready to abstain from getting behind the wheel for much longer. It won't be fun, but I am afraid to drive, precisely because whatever patterns my seizures may exhibit are not strong, and they COULD happen at any time. Yes, it is unlikely given the frequency of my seizures, but no sane person would doubt the very real possibility. The consequences would be disastrous. A seizure while taking a test is one thing; I was driving 15 minutes before that particular seizure. The breakthrough that occurred last week happened less than an hour before I would have settled behind the wheel. Seeing as I have no aura before my seizure, the onset of a tonic clonic while driving would mean a certain crash.

Cars are more than utility for me; working on vehicles and driving are two of my passions. But no passion is worth putting others' lives in unreasonable danger. I'm going to be riding my bike or getting rides for a while...

Any input would be appreciated, particularly others' experiences regarding driving as an epileptic and feedback on my decision.

Thanks for this forum, I appreciate the resource.

Tim

 

[masterjen]

In my area you have to be seizure-free for 6 months to drive regardless of whether the doctor reported the recent seizure to the DMV (or its equivalent). Should you cause an accident due to a seizure the police can find out whether or not you have had a seizure within the qualifying time by legally requiring your doctor to answer the question.

 

[cawhitern]

Where I live you also must be seizure free for 6 months before driving. I have a pretty long aura which has given me a sense of security coupled with being seizure fee for 6 months when I drove. Currently I'm less this 6 months post seizure and not able to drive. You are right to be hesitant to drive such a short time after a seizure, no matter what the doctor says. I would check with your BMV to double check what the driving restrictions are in your state.
Good luck!

 

[Belinda5000]

:agree:In my state you have to go 6 months seizure free to be able to drive.
This doesn't have to be seizures in your family for you to have seizures.
For seizures to come out of the blue it's called idiopathic (unknown cause) Your not the only one who can get hurt if you have a seizure behind the wheel either.

I've never had a license to drive never been controlled enough to try.
I don't care someone else or worse.

I take public transportation to get around. but have had time when I've had to depend on others get . Don't drive till your controlled!!!!!!!!!!!!!!,
I,had E for over 5o years and when someone with E drives that isn't controlled it gives everyone with epilepsy a bad name especially if there controlled.
and able to drive.

 

[Bernard]

Hi Tim, sorry to hear about the seizures. Glad you finally decided to introduce yourself.

One thing I have learned from observing my wife for the past 20+ years is that seizures are wholly unpredictable. Her seizure pattern has changed so many times. Seems like for a while, her seizures would follow a set pattern - only seizing at night or in the morning or in relation to a specific set of triggers. And then inevitably one day, she has a seizure which breaks the pattern. You just never know.

 

[Cint]

I've had E for over 30 years and like Bernard's wife, my seizure patterns have changed over the years. Originally they started as CPs and then slowly developed into TCs, too. I do have the auras, tho. I had an motor vehicle accident nearly two years ago. I had a CP while driving and ran into a wall. Fortunately, no one was injured. I had just started driving again because here in Colorado it is 6 months. But since that accident, I decided not to drive. It is hard, but I am safer now. My seizures are about the same as before. No more 911 calls and trips to the ER, I hope.

 

[shamethellama]

Thanks all, I really appreciate the advice and anecdotes. Today marks the first day of me riding to work. 14 miles, two major hills, but totally do-able. I think I can do this. And I've never had much of a social life anyway so I won't be missing my car all that much in that respect.

 

[shamethellama]

I've thought about this more, and researched it more, and the overwhelming consensus among people who share a similar issue is to not drive for a long time (6 months to a year or more) and some even decide to completely abstain from driving. I guess I just don't understand the reasoning behind the two week driving restriction suggested by my neurologist, primarily because no two seizure events have been less than a month or two apart, whether I was un-medicated, on Keppra, or on Lamictal. Two weeks seems like a fairly meaningless time period to me. It would make more sense if my seizures were daily or at least near so, but given that the events have never been that close, the logic is lost on me. Hell, it would seem that if I were to drive, the two week period following a seizure would be the safest time for me to do so. I'm being somewhat facetious, but I believe there is truth to that. No, I am not going to drive.