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izzy16323

Driving with epilepsy

I could really use some advice and opinions.  Months ago I had a seizure while driving.  Luckily I wasnt hurt, I simply drove into the guide rail and no one else was involved.  I havent had a seizure since and have been feeling great.  Medicine levels are great too.  My question is at what point do I drive again?  I know the requirements legally and I have my license now.  But at what point is it "okay" for me to drive.  I spent 20 years of my life driving with epilepsy and never had a problem.  But now that this has happened to me I just dont know how I go back to driving.  If I go back to driving.  I live in a place where the only way to do anything is to drive.  Its a small town, luckily there is one very limited bus that I am able to take to at least get to the store.  But this has left me unable to work or have any sort of life.  So for anyone who may have had a seizure while driving or even anyone who worries about having one, how to you get to a place where you feel like its ok to get behind the wheel again?

Comments

Re: Driving with epilepsy

you need to check on your states restrictions.     You have to be a certain amount of time seizure free before you can drive.   And that needs to be written by your doctor that you can get back behind the wheel.  

Its called the honor system, and you need to make sure you get an ok from your neuro.  

Re: Driving with epilepsy

I went with the law, which here in Wisconsin is three months seizure free.  I did some easy drives first, since I hadn't driven in over a year.  I had at least three complex partial seizures while driving, which I only realized after the fact.  Once I realized I was having seizures, I became familiar with the postictal state (the feeling of disorientation following seizures).  I realized then that I had seizures while driving.  Yikes.  When I had a seizure in my 20s, I voluntarily gave up my license and I had to go through five years of assessments and paperwork to the DOT.  When I started having seizures in 2007, the ER doctor told me that I could just not drive (rather than voluntarily give up my license.)  That's the approach I took.  I didn't drive again until I was three months seizure free.  Good luck!

Re: Driving with epilepsy

Oh I know the legal requirements.  I guess I am referring more to how you personally get back to the point where you can drive.  I mean, just because legally I am allowed to drive or just because my doctor says I am okay to drive that doesnt really mean anything.  I was allowed to drive before and out of the blue I had a seizure while driving and crashed my car.  So even if you are legally allowed and medically allowed how do you get to the point where you personally allow yourself to drive knowing that there is absolutely no way to know when you might have a seizure. 

Re: Driving with epilepsy

I've been told by my neuro that the first 12 weeks after a tonic clonic are when you are most likely to have another one, so that's why the three months.
I felt ready to drive after 1 month, however didn't because if you have a seizure while driving here and cause an accident you lose your licence for good.
I never drive if I am tired, or over stressed because these are my triggers.
Stick with the law, they are there for everyone's safety, and if you have gone past this time then drive when you feel ready too.
Sarah

Re: Driving with epilepsy

I have focal seizures.  My neuro sucks too.  He tells me I can't drive 6 months after a seizure.  The way mine happen, about the time I get close to my 6 month period I have another seizure and that adds another 6 months.  I have had one wreck because of a seizure.  I wasn't hurt and I didn't hurt anybody thankfully.  I ran off the road by some railroad tracks.  I hit a sign.  Minimum damage to my car.

I have to drive to go buy groceries, pick up my prescriptions, or go to the doctor.  I only drive when I feel good and not feeling the side effects from my meds.  I take Keppra 1000mgs twice aday and Neurontin 300mgs every 8 hours.  These make me drowsy and dizzy so I just drive only when need be.  

I have only been having seizures for almost 3 years so I'm still new to this.  I had a stroke 2days before I turned 50.  The scar tissue from my stroke on my brain is causing this.  I have plenty of warning when a seizure is coming on.  My left arm and hand are numb all the time from nerve damage from my stroke.  My warning is is like an electrical shock feeling in my arm and hand.  I have a seizure about every 4 months.

It sucks not driving.  I sometimes feel like a prisoner in my own home.  For the most part I just stay home because I'm scared to drive now after having my wreck.  I get nervous when I drive now.  My son goes with me everywhere in case I start feeling too nervous to drive.  He doesn't have a DL but he can drive good enough to get me home.  I normally drive good because where I live the traffic is not too bad, small city.  Everything I need is 15 minutes from my house.  I know a lot can happen in 15 minutes but I try to be as careful as possible.  

In my opinion,  I would say only drive when you feel good.  Short distances are a good start.  Work up to longer distances slowly.  I am not up to long distances yet.  Right now I don't trust myself for say a 2 hour drive.  I have drove a 1 hour drive but my son drove back.

I hope you feel comfortable driving again soon.  Drive 5 miles under the speed limit if need be. Its helped me to do that.  If it makes the other drivers mad  OH WELL!!  They will get over it.    

Re: Driving with epilepsy

Izzy, I respect you for going above and beyond the legal requirements in order to be safe.

In my case, my doctor has allowed me to drive because I have been able to recognize when a seizure may be coming on and/or when I am more likely to have a seizure. Is there anything you remember about what was happening before your seizures started?

For me, I always get this sense of deja vu. It's this feeling like "I've been here before and I was doing the same thing that I was doing before (ie watching TV, sitting at the computer at work, etc)" although I'm never thinking "this it was what it felt like before I've had (grand mal) seizures in the past". Whenever that happens, I immediately pull over, take the keys out, and set the parking brake and just sit there by the side of the road for a long while. It something happens, it happens. If a seizure doesn't happen, I try to find a safer place to park and call to let someone know I'm running late and/or need a ride home.

To answer your question, I'd try to get a good sense of when you know a seizure might be about to happen and (like you are already doing) to err on the side of caution when deciding whether or not to drive on a given day.

Re: Driving with epilepsy

And I will say too that I just have grand mal seizures (or tonic clonic or whatever the correct term is now).  I never know when they are coming.  I went 9 years without one and then started randomly having them again.  My neurologist sucks but I have no way to see anyone else.  I need to know how to feel like I have some control of my life again.

Re: Driving with epilepsy

Let me also ask if anyone has had any issues or knows of people having issues with having seizures following using benedryl or any other antihistamines. I was taking benedryl to help me sleep prior to having that last seizure. Since then I have stopped taking all over the counter medicines because I found information online about it not being a good idea for people with a history of seizures to take benedryl because it can lower your seizure threshold. Has anyone else heard this or experienced it?

Re: Driving with epilepsy

Hello again.
I have been advised by a number of different neurologists never to take antihistamines of any kind because they lower your threshold. It messes with my tegretol & epilim (valroate). Always ask the pharmacist or doctor before you start taking any over the counter meds, even vitamins.

It's amazing what doesn't 'mix well' with epilepsy meds.

Sarah.

Re: Driving with epilepsy

I find this really interesting because that is what I have read and yet on two different occasions I have been advised by my neurologist to take Benadryl. Once to help me sleep and once because I was sick. I was taking it quite regularly to help me sleep and during that period of time had quite a few seizures. Then I researched it online, stopped taking it, and haven't had another seizure.

Re: Driving with epilepsy

I've been told the same thing as Sarah.  And before I was told, I took cold meds that made me feel really bad, dizzy and like I was going to have seizures.  

 

Fawn M. Fox

Re: Driving with epilepsy

I had a one-car collision and it scared me out of my car.  I don't know if you believe it or not, but I believe it happened for a reason.  My car ran into a bush, right in front of a driveway to a preschool!  I could have murdered a child!!!  I never would have forgiven myself.  Its not fun, or easy.  However, it might have been your sign that its time to get some real help with an epileptologist (a neurologist who specializes in epilepsy) to get the best medical help you can get.  Don't decide to drive just because you feel good.  You felt fine when you drove the day you had your accident, didn't you?  Find out the laws for your state/country and follow them.  Get down to the epileptologist...they can help you.  Good luck. 

Re: Driving with epilepsy

I am 44 and in June of 2012 had an accident in my new car, I would have owned it for a year in July 2012, I had worked night shift, instead of going home like I should have, I did some errands after work, somehow I managed to drive on top of one of those rope guard rails, someone must have been watching over me because another 20ft was a 60ft drop, I thank god every day that I am here and I didn't hurt anyone else, my friends say ts because I am the only one who can  handle my husband and my daughter.

I am now known as Miss Daisy, thankfully, I was able to change shifts at work, which enables me to get more sleep, which is a major factor  with my seizures. I have changed meds, am getting proper sleep, and doctor says I can drive again in March and I am scared as hell,  but I am going to keep my mothers advice that she gave me at age 16 when I was first diagnosed, "it is an illness, we will get through it, and don't let it stop you" As far as being behind the wheel  again, My nephew said it best the other day, life is a chance Aunt Linda, go with your gut.

Re: Driving with epilepsy

thanks so much for your post.  today my doctor switched my medicine.  i am getting more sleep, taking better care of myself, am less stressed, and trying to just let whats going to happen happen.  lack of sleep definitely plays a role in my seizures as does stress.  am a little worried about transitioning to a new medicine, i have been on depakote for over 20 years, but am hoping for the best.  i have been dealing with epilepsy since i was 12, i like what your mother told you.

Re: Driving with epilepsy

I was diagnosed with tonic-clonic epilepsy at age 9, it started with nocturnal seizures. At 16 I had my first day seizure, my Dr at the time never discussed driving restrictions. I am 40 now, I have had several day seizures all reported to my neurologist where I lived. It wasn't until I had major accident in Mississippi while driving, (alone thank God and no one else was injured) that my license was taken away for a year. I easily could have died or killed others, I was driving on a long bridge(or causeway) that had nothing but low concrete barriers between drivers and the water. I believe it was a wake up call for me, to start taking better care of myself. Better sleep patterns, minimal time on the computer and computer games(little to none), since I am photosensitive. When I started working I requested a screen dimmer for the work computer - to protect my sensitivity.
I was diagnosed with partial-complex seizures a few years ago. I seem to be evolving, if you will.
Most recently, tuesday, the 19th of Feb, 2013, I became confused in two different stores, the last store, I had a prominent starring spell, not sure of the length of time. However, I have now lost my license for 6 months. It is based on the Dr filling a form and me sending it in to DMV. Retroactive to the event, my Dr has made it clear, this isn't about my freedom to drive, it is about the safety of my life on the road as well as everyone else. I could easily hit a small child, an elderly person, anyone, can I live with that? No. I am working on bus, hospital shuttle services, friends, neighbors, husband, husbands' co-workers-wives, Pharmacy delivery, Social Services.
Everything is changing - I was never educated as a child or teen or young adult about some of the precautions of Epilepsy. How can you grow up with Grande-Mal epilepsy and never be told the do's and don'ts.
Today, we are becoming informed and prepared. Take this serious my friends please. I have also had to be revived once.
Listen to your Dr. If the state law says you can drive that is one thing. If your Dr is changing your medicine around seek his or her advise. Regarding when it is safe to drive, each medicine takes time to adjust in a persons system differently. Consult your Dr. they are your go to person for advise. Stay safe!

Re: Driving with epilepsy

for right now driving isnt even possible.  when i had my accident i totaled my car and i am in no position to get a new one financially.  unfortunately i dont have any family nearby, they are 9 1/2 hrs away, and i really dont have friends here.  my town has a very limited bus that i can take to get to the one grocery store and to my family doctor.  i really want to find a new neurologist but because of my transportation issues its just not possible.  i am in the process of switcing medicine right now.  had been on depakote for over 20 years.  am in the process of  switching to keppra.  just started the process on friday and at the moment am absolutely exhausted all the time while i take both medicines.  hopefully once i get weaned off the depakote (if everything goes ok) this exhaustion will ease up.  i am sleeping better, have tried to lower my stress, have stopped taking the benadryl i had been taking to help me sleep (which i was told to take because they said it was fine).  not being able to drive has really changed my life.  i barely leave my apt, seeing my daughter has been greatly limited because i now have to rely on my ex to drive her back and forth (though believe me the thought of driving with her in the car makes me sick).  i feel like i have become a hermit. 

Re: Driving with epilepsy

I did the same thing.  I drove, had a couple of accidents, minor, little rear ends and no one was hurt.  I normally have little blackouts, nothing major.  BUT about a year ago, I had two grand mal seizures.  They came out of no where and were back to back.  Luckily, I was not driving, but it was at the end of the day at work where I was about to be in my car!!  I definitely would have died and/or killed others.  It was a VERY scary thing to think of so I have not been driving since and will not until I get a surgery and can be sure I have my seizures under control, hopefully none again.  Fortunately, I do have a husband and friend who are willing to help out and drive me around.  I feel horrible though being so dependant on people like I am.  I am able to work though, but it is not an extremely stressful position.  I am a receptionist whereas before I was a paralegal/legal secretary which had its moments.  I would love to go back there though if/when I can!  I'd definitely advise you after that experience not to risk it!  Use the public transportation at least until you have some control, if not and end to your seizures (sometimes people are lucky and they just stop!).

 

Fawn M. Fox

Re: Driving with epilepsy

If you don't have 'auras' or seizure premonitions, I don't know whether I could honestly endorse you ever getting behind the wheel again. Pharmaceuticals are great until you have a break-through seizure. If I didn't have this 'advanced warning system' I would not even think about driving. Think about the lives that are at risk. I am also in a small town, limited bussing, unemployed, limited social life. I have had 3 seizures while driving, 2 of em I pulled over and called somebody before the seizure. And the one I didn't pull over for? Completely totaled the vehicle, split the back of my head open, broke ribs, fractured and broke a vertebrae, sprained everything else. Kinda fucked-up, but I felt it coming on for about a minute or more and just kept going. Oops! Happy to say no one else was hurt.   

Re: Driving with epilepsy

Those of us who are experiencing uncontrolled seizures should NEVER drive.  I live in Massachusetts, where it is neccessary to have not had any seizures for six months in order to qualify for a driver's license.  Such a requirement makes a great deal of sense, however unpleasant it may seem.  

Anyone who drives while at risk of having a seizure is both irresponsible and looking for trouble.  To undergo a  seizure while behind the wheel could lead to a far greater disaster than a minor accident like hitting a guard rail.  a driver to whom this happens could collide with another car or pedestrians, leading to fatalities and /or serious injuries to all involved.  It could also cause an accident involving only you, such as hitting a tree or driving off the road which could kill or seriously injure you. 

At age 51, my seizures have been uncontrolled for thirty years and have never had a license or driven during that period.  Fortunately, I have been able to rely on my parents for transport.  No one with epilepsy should ever drive unless their medication or other treatment is 100% effective leaving them totally seizure-free

Gandalf

Re: Driving with epilepsy

   I understand your how you feel somewhat Izzy. I too am a grandmal and I drive. I know there are probably people out there that wish that because I have seizures with little to no warning that I didn't. I have so few and only every few yrs that just like everyone else out there I really try to live as normal of a life as possible.  That includes driving. Luckily I have never had one behind the wheel (Knock on wood) I pray I never do.

    However, whenever I do have one, I of course listen to my dr, and wait the respected amount of time before driving again. There's always a med change or adjustment that I must complete and be on for x amount of time and I would never risk disobeying that. Even so, I'm always nervous when I start to drive again. I know that anything unexpected can happen to anyone at anytime anywhere....but I know I have a bigger responsibility AND risk of Liability should anything ever happen. Even tho my state is pretty lienant I know that I may even lose my license when I go to renew this year as they ask about seizures, and thanks to a medical test this last year....well. 

   I like you have to rely on family and friends who aren't always around and can't always take me everywhere I need to go. (Especially with no spouse to help) I too, sometimes feel like a hermit. Even though there is a pretty good public transportation system overall here..it's not real close to me either and the hours aren't always what you need. It would be better if country wide there was a better bus/transportation system and maybe less of us would feel the need to drive. 

    Just take it slow. I know you may get anxious....but if you're under control it won't matter if you drive tomorrow or next month. 

 

Re: Driving with epilepsy

This is a great question. For anyone who has seizures more frequently than their state guidelines, it's pretty clear, you're pretty much never driving again. But like you, I have to decide what actually makes sense. My state says you have to be seizure free for six months. I only have seizures once every year or so. So does being off the road for six months really ensure anyone's safety? No. Because I could have a seizure while driving the day after I get my license back. So it really boils down to how well does your medication control your seizures, and how much of a calculated risk are you willing to take. Obviously most states are willing to allow you to drive again after a certain period of time and there are no guarantees. Very easy for someone who doesn't have this problem to say none of us should ever drive. But we all know how much life sucks when you can't get places. So the question is, how confident are you in your meds and how much risk are you willing to take. Personally, I've been very lucky. I've never had a seizure while driving and I might feel differently about the whole thing if I had. But up until now, I just follow the state guidelines. If they are willing to trust me on the road, I see no reason why I shouldn't. After all, there are a heck of a lot of other risks out there (drunks, heroin addicts and cell phone texters) on the road right along with us. I'd be interested in seeing the numbers on deaths caused by those folks vs. those caused by people with epilepsy. Although whenever I'm with others, I like to leave the driving to them.

Re: Driving with epilepsy

I just want to say thank you so much to everyone who has taken the time to reply to my post.  It is so greatly appreciated and it helps so much to know that there are people out there who are going through the same thing I am.  I have done a lot of thinking lately and I think I have decided to start looking into moving about an hour from where I am now to a bigger area where there is more public transportation.  This could give me more opportunities to actually have a life, maybe even find a job.  Not only that but it would put me closer location wise to being able to maybe find a neurologist that I have more faith in and who is more knowledgeable on Epilepsy than the doctor I see now.  I have been stuck with him though because he is the only one in this area and I have no way to get to anyone else.  There is a lot I need to look into before I can make any decisions but I am feeling pretty good about the possibility and the doors that it could open for me.  Am still working on the switch from Depakote to Keppra.  So far so good.  I increase the Keppra this coming Friday.  But anyways, thanks again so much for actually taking the time to reply to me.  I am very grateful  :)

Re: Driving with epilepsy

I know exactly where your coming from my seizure's were controlled I held a driving licence, I had been seizure free for about five years when on the way to work a had a seizure while driving I drove my car for about half a mile, I didn't hit any oncoming traffic I ran into two parked cars I couldn't remember a thing luckily I was followed by a man who's brother had epilepsy and he rang for an ambulance , I was in hospital over- night and on the way home the next morning with my wife we stopped at the police station and I handed in my licence, I have never driven again but every day I consider myself so lucky I didn't kill myself but worse still someone else as I could never of lived with that - as much as I loved driving I will never drive again even if I have to walk everywhere !!

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