The drive to drive is strong, but the reality is driving with epilepsy often presents a huge challenge.

James and Dr Kaitlyn talk about getting from A to B as they navigate various transport options along the way.

James: Hello and welcome to the I’ve Got This: Owning my Epilepsy podcast series. My name is James, 22 years of age, living in Sydney, been living with epilepsy since I was 18. I’m here with Kaitlyn and today’s episode is Drive to Drive, focusing on the restrictions of driving with epilepsy.

Kaitlyn: I’m Kaitlyn Parratt. I’m a neurologist and epileptologist working in Sydney, and I have a special interest in looking after young people and women with epilepsy as they navigate different periods in their lives.

Driving is often a big issue when you’ve got epilepsy because there’s restrictions, obviously to keep you safe and the general public safe. Can you tell us a bit about your first seizure?

James: So, my first seizure, I was driving… I was going about 100 on the highway and I was about to take the first exit. I didn’t feel anything. So, I’m just driving up, up the exit. I hear my eTag beep. The next minute I woke up in the ambulance. I didn’t have any oncoming feeling. I had managed to hit the car in front of me.

My car went into neutral, and I rolled back down the ramp and the truck came from behind and smashed behind my car. And I had woken up in the ambulance. I didn’t feel anything. I just woken up, really. At first I was like, What’s going on, with the hell? What the hell just happened? What am I supposed to do?

Kaitlyn: I remember that because we weren’t really sure at the beginning, which is often the case whether this had been a seizure or a faint, or whether your blood sugar had dropped or there was some other explanation. And we had to go through a bit of testing and, in fact, wait for another event to declare itself that this was, in fact, a seizure that caused that car accident.

And we really had to say to you that you weren’t able to drive until we were confident that you were seizure-free for the prescribed period of time, which provided to us by our, you know, a bigger body Aust Roads. How do you how do you remember managing that? It’s pretty devastating not being able to drive.

James: So, yeah, it being, you know, my main mode of transport, it was devastating because I’m thinking, “Oh, how am I going to get to work now?” How am I going to, you know, go even do something simple, down to the shops and grab some food or anything like that?

So it was it was challenging at first. But once you do realize that now you can ask your friends to go somewhere. There’s always other means of transport and just accepting the fact that it is basically for your own good. You do not want to. Well, I did not want to have a seizure whilst I was driving again because it could end much worse than what it was.

So I sort of took that as, you know, it is what it is and it is, for your health, it’s for your safety. It’s not not for anything else. You know, that’s something that’s like the harsh reality do that you have to accept.

Kaitlyn: And your story is a good one for people who aren’t seizure-free because some people with epilepsy aren’t seizure-free and then can’t drive and return to driving after those periods of seizure freedom and I think as a neurologist, sometimes it’s the hardest thing to say because we know how restrictive it is. We know how much it affects lifestyle, confidence, all those things.

But the bottom line is, the reason for these restrictions is to prevent events like you had. You didn’t know you had epilepsy at the time, so there was no way of avoiding that. But when you know you’ve got epilepsy and you know there’s a risk of a seizure and it could occur while driving, it could have devastating outcomes for the person living with epilepsy and for other people around them as well.

So the driving restriction, I think, is awful for patients. And it’s really hard for us because we don’t want to restrict people, but it’s there for a good reason. And the guidelines as well are derived from lots of data. It’s not just plucked out of the air, so lots of people work really hard looking at lots and lots of data about what’s the likelihood of a seizure, what’s the likelihood of that occurring while driving.

And then they choose these restrictions to make it as safe as possible for people living with epilepsy to drive. But how did you get on with not being able to drive? What other strategies did you use during that time to get yourself here, there and everywhere?

James: Oh, public transport obviously I did use and my, you know, my friend group and family. But if you don’t, you know, necessarily have those supports public transport that’s the way you basically have to get around. And you know people often think public transport is such a burden, but once you deal with that what I did you know, I had to catch public transport.

So you realize that it actually could be much faster to get places you’re driving. You don’t have to worry about parking. You have to not have to worry about, say, getting any fines or anything like that. And it’s great to an extent that you can basically go wherever it doesn’t restrict you as much as you know, you may think.

I used to think, ah, you know, I’ll have to drive here. I’d have to get someone to take me here. It’s not the case. Yes. So just finding other means of transport, especially public transport, and asking, you know, my family and friends to take me somewhere, you may also, you know, think on, you know, I’m such a burden, I have to get everyone to take me everywhere. It’s not the case. Many people will realize they’re very open to take you places or, you know, help you out and drive you here and drive you there.

And there is always other ways to get and it can be faster. So that’s how I always used to think about it. Look, I was like, if I had to drive, it’d be like an hour. But I’ve caught the train and it’s taken me 20 minutes and I don’t have to park anything like that, especially me.

I basically took driving for granted. So the fact that I couldn’t drive, you know, it really did open up.

Kaitlyn: What you said about people wanting to help you is so true. And I always say to people, if your mate, your sister, whatever, asked you to pick them up because they weren’t able to drive for a period, what would you think? How would you feel? And everyone says, Oh, I’d be more than happy to see you. So you’re right.

We as the person asking you, feel like maybe it is a burden to others, but it’s actually not. And if you turn it around and think of someone else, ask me what I consider that a burden? No, it’s not a burden. People want to help each other. And I think you know more about social media than I do as a young person.

But some of my patients who’ve lived in sort of more remote or rural areas and it can be really tricky because there’s not as much access, but some of them have set up, you know, WhatsApp groups or some social media groups with people around them so that they can just pop in the day before I need to get to X, Y and Z, and then people can just say yes and no.

So again, they don’t feel like they’re asking the same people every time, but there’s this network of people around. And so, if they happen to be moving in the same direction as them, they can help. So that’s another thing that people can do. But the point about the fact that others don’t see this as a burden is so spot on because we don’t everyone at the core of them want to help.

Others want to help their friends and family, particularly in a time that’s difficult.

James: It’s really it. My friends and family were really supportive, and it’s not a burden. I just I say that over and over again. But like Kaitlyn said, if someone was to ask you one of your friends, oh can you drive me here and you knew you knew their circumstances, you’d say, yes, absolutely, straight away. And you’ll find that nearly everyone wants to do that for you.

And it’s not an act of sympathy. It’s just out of their kind heart. And, you know, as a friendship, as your family and as your everything. So you don’t necessarily have to think like it’s a burden or it’s out of sympathy or anything like that. It’s just because your family and friends and whoever wants to take you anywhere and care about you and you know, it makes you your life easier.

And then what it is.

Kaitlyn: And most relationships, be them close family relationships or friendship, I often say to people it is about having great friends and family to go and have fun with and do activities with. But it’s actually also about having a core group of people who are going to be there for you when the chips are down, and you mentioned before, everyone’s going to have stuff happen to them, everyone’s going to have stuff go on inside to just open that line of communication and say, Hey, I need people at the moment, people will jump to help.

Sometimes the diagnosis of epilepsy is less hard to take than the driving restriction because of the impact it has on day-to-day life. And the restriction varies depending upon certain circumstances, and those rules are outlined for us. So, for a new diagnosis of epilepsy or a first seizure, it might be six months. In your situation, it was 12 because it was a seizure that caused a car crash.

And obviously, we want to stop seizures to get people seizure free for those periods and get them back on the road. And the big components of that are medication and taking the prescribed medication on time and try not to miss doses, which can actually be harder than we think. So setting up those mechanisms to remember to take tablets, whether it’s an app or whatever, and changing lifestyle, which again can be challenging and managing all those sorts of psychological adjustment to these things.

Did you find anything in particular that motivated you the most to get control of things?

James: Yeah, definitely the fact that I had to, you know, be seizure free for 12 months that not only for my health, that was a bit of a motive, I took my tablets, I still take my tablets to this day. I have an app on my phone that just reminds me 10:00 and 6:00 that I have to take my tablets.

When I was diagnosed. In all honesty, like Kaitlyn said I just… I wanted to drive. I didn’t necessarily, you know, mind that I had epilepsy because I just looked at it as a condition which is normal to an extent. It’s just like asthma or anything like that. So I just wanted to do everything that I could to get back to driving. That was my key motivation. So yeah, taking my tablet on time, drinking a lot of water, getting enough sleep and you know, that did really motivate me.

The fact that, yeah, it’s 12 months or it could be six months, in any case, but that probably was my biggest strength in dealing with epilepsy. Yes.

So, I couldn’t drive for two and a half years. I got my license back not long ago, but I did have hiccups along the way. So first I thought it would be six months because we weren’t necessarily sure.

I ended up having another event, and then I had two or three more I had before I could get my medication correct. So, I was on one medication and I realized that medication, you know, was changing my mindset to an extent, and I needed to change.

So I changed to another prescription and I found the right dosage. And the right dosage has helped me so far. And that allowed me to drive after two and a half years as I was seizure free for over a year.

Kaitlyn: It did take us a while to get things right, and that’s an important thing to think about. So, you know, we broadly quote that 70% of people with epilepsy we can get seizure-free. And some of that, you know, maybe just less than 50%, first tablet suits person, become seizure free and away we go. Other people like the situation for you, James, is it takes us a little while to get the right medication.

We’ve got lots in our hands to give people. We choose them according to the individual and the type of epilepsy and what we think is best overall. But sometimes it takes us a little while to get it right. So it can be a more sort of prolonged restriction than we would hope for. And obviously, you know, you hoped for.

But we continue to try to get you there. And I think that’s the thing is it does take a lot of patience and perseverance, and I guess also understanding that once you get seizure-free, sometimes people go through this, ‘oh, I’m seizure-free, do I really need this stuff anymore?.’ It’s at that stage where it’s really important, as you said, to say, hang on a minute, I’m here because I’ve been doing this.

And so I need to keep doing this to stay in this position. Some people can’t drive because they’re not seizure free and that’s about 30% of people, and that’s tricky. So I think again, thinking about the positives or the solutions to the problems rather than focusing on something that we can’t change, is really important in thinking about public transport, you know, personal networks.

And for some people it might be trying to support them financially for other transport options, which we can always talk about and think about for people whose epilepsy is difficult for us to control.

James: Yeah, I guess trusting the process in itself is a big thing as well. You’d rather you don’t want to get complacent either with your medication, but you’d rather get your medication right at first rather than having a seizure going to drive. At the end of the day, your health needs to be prioritised.

Kaitlyn: James we were so happy when you could finally get back on the road and you’ve stayed that way. But there are some people who don’t become seizure-free, and it can be a real challenge, particularly in areas where there’s not good access to public transport. And even the cost of public transport can be tricky for some people. So it’s important also to realize if you are one of those people, that driving is restricted and now it looks like it will be in the future for prolonged periods of time, that there might be options for subsidized public transport, subsidized taxis.

And it’s an important thing that you can talk to your neurologist about so that we can provide as much support to minimize the impact that that transportation challenge has on your day-to-day life and your psychological well-being and all of those on-flow effects because it all impacts, you know, how well we’re optimizing at your life, you know, living with epilepsy and keeping things in the best control as we can.

Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “Get your Freak On,” Where James, Rosie, Kaitlyn, and Ingrid, discuss the impact epilepsy can have on romantic and sexual relationships.

This podcast has been produced by Lateral Connections with support from Eisai Australia. The information in this podcast is general in nature and not intended to replace the advice of health care professionals. Please see your healthcare professional for any specific advice.

If you have any questions about driving with epilepsy, it’s important to speak to your neurologist, as well as understanding local regulations by contacting your local driving authority.