Navigating Epilepsy: Driving Safety and Independence with Dr. Proleta Datta

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Katy Peters:
And I am Dr. Katy Peters. And this is the Brain & Life Podcast.

Dr. Daniel Correa:
Welcome back to the Brain & Life Podcast. Now, I hope you enjoyed the last two weeks, part one and part two episodes, where we heard from author, Liz Nugent, about living and adapting through her life with dystonia. And then following that with Dr. Alfonso Fasano about treatments like botulinum toxin, different types of physical therapy and therapies, and neuromodulation like deep brain stimulators. And how they can help those with dystonia and other disorders. Now, as our regular listeners know, I'm Dr. Daniel Correa, but Dr. Katy Peters isn't with us today. I'm joined by a guest co-host, Dr. Proleta Datta. Dr. Datta is an assistant professor and epileptologist that's an epilepsy specialist at Oregon Health & Science University. She specializes in hard to treat seizures and epilepsy conditions, improving access to epilepsy care. Proleta, thank you so much for joining me today. Now you've worked in Texas, California, Nebraska, and now Oregon. How do you prefer getting around Oregon both for work and fun?

Dr. Proleta Datta:
Hi, Dr. Correa, thank you so much for having me on the podcast. Yes, I have lived in a couple of places across the US, and every place has their different beauty and their challenges. And specifically about today's topic, I think it has made me really appreciate how living in more urban settings changes how you travel, your modes of transportation, compared to maybe a little bit more semi-urban or rural places. I will say, I love living in Oregon. It's very green. And the other thing I've always said that I'm originally from India and I will say this, patients are kind of the same everywhere. We're all similar in all our wants, and needs, and challenges as well. It's been an absolute honor and pleasure living in so many different parts of the country.

Dr. Daniel Correa:
Last week we were talking with Dr. Fasano who works up in Toronto, and he had the same point that when we see differences culturally and between individuals and just our social aspects, but we're all so similar in many of the needs and health needs that we have. Now, for me in New York City, it's always a mix of walking, running for fun sometimes, and public transportation around Manhattan with my wife. But for work, it depends on which hospital and office I'm going to. So my weeks can be a mix of subways and other days where I braved the traffic from Harlem to Montefiore and Einstein locations in the Bronx. And it's like you said, that kind of experience, it makes me so appreciative of how, whether it's going to the grocery store, out for dinner or to work, we can be so dependent on the quality of our local infrastructure and the transportation options.

Dr. Proleta Datta:
Absolutely. In the US, getting your driver's license is such a life milestone, if you will. And being able to drive is so important not just to get to work, but socialization, independence. And today's topic is really important, as we were chatting earlier, this comes up in almost every clinic visit of mine with some patients about driving and seizures. In the US, your access to transportation, your access to easy, affordable transportation is so dependent on where you live. If you live in New York City, there are a lot of options. I'm here in Portland, Oregon. Again, a lot of options, but if you live in some of the more semi-urban or rural parts of Oregon, you are limited to your ability to drive and in some cases, getting someone to drive you. It's a whole production, if you will.

Dr. Daniel Correa:
Yeah, absolutely. And so, today our episode, what we're doing is we're bringing together some of the East Coast and West Coast perspective and experience helping and supporting individuals who live with seizures and epilepsy. To unpack some of the issues that affect those who have experienced seizures or live with epilepsy and how seizures and epilepsy impact driving. What's safe, what's legal, how new guidance can help people get back behind the wheel responsibly and in coordination with their doctors. And together, hopefully we can separate and eliminate some of the myths that exist and help bring to focus the facts and talk more about practical next steps for each person. So first of all, I think an important thing for everyone to understand, and especially for our listeners who aren't as familiar with seizures or epilepsy, what is happening in the brain when someone has a seizure?

Dr. Proleta Datta:
So a seizure, I often will say this to my patients, is when you have this sudden electrical storm in your brain. And what symptoms or the clinical features, as we say, of the seizures often depends on which area this electrical storm is happening from and how much of the brain is involved. But you can imagine that if your brain is having this abnormal synchronized electrical activity, you are not going to be able to do a lot of things that you were otherwise able to do, such as, for example, operate safely a motor vehicle. Often, the symptoms can be staring off, they may not be able to talk, they may kind of have confusion. And I think most people, when you say seizure, they think of a whole body convulsion. So often, the word people use and we also use is tonic-clonic convulsion, but not all seizures are tonic-clonic convulsions.
Sometimes they can seem milder, but the effect on something like driving can be a big risk if you're not aware, if you're confused. Imagine if you're going on a freeway at 65 miles an hour, that can be very dangerous for yourself, for other people on the freeway as well. So it is important that we keep our patients safe, but we also allow them to drive safely when they're able to. In fact, most people with epilepsy could drive and may be able to drive, especially if their seizures are well controlled. That's one of my hopes with most of my patients.

Dr. Daniel Correa:
And before we get to some of the updates, and the guidelines, and recommendations, I wanted to pose to you a question that we even debate between neurologists and epileptologists. Is there a type of seizure that could be safe to have while driving?

Dr. Proleta Datta:
Yes, actually there is. And this is, again, one of the actually recommendations that they make is that we need to individualize. There should not be a blanket mandate for everything because every patient is different, people's seizures are different. The same person can even have more than one type of seizure. So it is important to be nuanced. There is a type of seizures that sometimes people will say auras or the more technical terms are focal aware seizures. And now there's a newer version where we call it focal seizures with preserved consciousness. So these are seizures where the patient is actually aware and may feel something. So sometimes they may have an uncomfortable feeling, sometimes they may report things like deja vu or a weird sensation, maybe a little bit of nausea. But the patient is completely aware, completely conscious, and not having any abnormal movement.
In this setting, if the patient is able to safely pull up to the side of the road. And that's the most important key, not just the fact that they're having a seizure where they're not losing consciousness, but they're actually able to operate the vehicle to the side of the road. Potentially, this is a conversation you have with your patient once you know everything about their type of seizures, they could potentially drive. Again, it has to be individualized. And here's the thing, it also should be that the seizure, that they're having these focal seizures without loss of consciousness or focal seizures with preserved consciousness should be such that they don't suddenly progress to ones without impaired consciousness. So that's, again, a very key nuance.
Say, they're having event where it starts with they're feeling uncomfortable, but then in two seconds they lose awareness, that wouldn't count. Again, safety first, right? In two seconds you may not be able to pull up to the side of the road safely. So in very, very specific conditions, I have a conversation with my patients and then we'll talk about this, about DMV reporting, et cetera. And we make very specific recommendations to the Oregon DMV about this. But again, individualized to the patient and very, very specific.

Dr. Daniel Correa:
Yeah, and I'm going to get back to it later on, a question about how we think about that return to driving afterwards. So now we've had for some time driving safety laws that are specific to each state, and sometimes people would just hear, "Oh, if you're on anti-seizure medications or if you have epilepsy you can't drive." And so, where are we between that, that they might just hear from someone in an ER or someone who isn't fully aware of the laws in each of the states to now these updated recommendations that have come out from a consensus of experts to help guide more of the laws as they move forward?

Dr. Proleta Datta:
So you're absolutely correct. In the United States, there is not a national driving rule or standard for patients with certain medical conditions which may affect their ability to drive such as epilepsy. Each US state regulates driver's license eligibility of patients with certain medical conditions, and in fact, sometimes they're quite variable state to state, even neighboring states. So for example, Oregon, the restriction may be three months, but in Washington, it's six months. In Iowa, it may be six months. And in South Dakota, you may have a restriction for a year. So if you live in South Dakota but you drive over to Iowa for work, it's potentially one year even though you may spend most of your time in a different state. So it's quite variable, which is challenging. However, kind of one of the things that this new consensus talks about is even though it's different in every state, there is some similarity.
There are two requirements that I think we should possibly focus on. One is the most common requirement is a person with seizure should be seizure-free of episodes with loss of consciousness, loss of awareness, or motor symptoms. So abnormal movements which may affect their ability to drive for, at least, a certain period of time. And they do say most commonly the minimum period of time is three months. There are some data showing that restrictions beyond three months don't necessarily change risk of seizures and/or motor vehicle accidents. And another requirement is that you do have to submit periodic medical reports to maintain that you are, in fact, staying seizure-free. There are some more nuances to this as well, I'm sure we'll get into in a bit. But those are kind of the two key things. A minimum period of seizure freedom, typically three months or more, and periodic submission of medical reports.

Dr. Daniel Correa:
And even that periodic submission of medical reports varies by states. Some of them are required, other ones are probably just a good recommendation to make sure that you as an individual when you're driving are protected if you were to get into an accident to make sure that your car insurance and your health insurance cover all the different things that might come up. You want to make sure to have these things documented along the way. Now before my time in New York, I worked as an Army neurologist. An interesting thing you pointed out was is that there can be, that variation can get complex when you have states that are very close to each other. And when I was working at Walter Reed and in the DC, Virginia, Maryland area, that was a unique instance. And then, where's your driver's license from? And so, I'm wondering what your thoughts are on approaching this.
But I know the way we would give the instruction was, first, where's your driver's license from? You have to still meet the driving requirements and the license requirements for your state where your driver's license is from. But if that requirement is a shorter time period or less significant than the state you're driving in, then you may have to also meet the requirements of the state you're driving in so that you don't run into any legal issues within that state. Or the insurance doesn't have a way of saying, "Oh, well, you weren't supposed to be driving in Maryland at that time because you weren't seizure-free for an amount of time that's required." How do you approach that? Or do you even suggest that some individuals as they have more seizure control, maybe even discuss this with a lawyer? It's so complicated.

Dr. Proleta Datta:
This is a very complex issue and we've looked into this a little bit and it can be very, very specific. Unfortunately, often it only comes up when something bad has happened when they've had an accident and somebody's trying to sue them, if you will, and say, "Wait, you were not a year seizure-free, and you live in a state that has a three-month requirement." So I think the way I've approached, it's kind of similar to what you recommend as well. I tell people, look at which state you live in. What is the address on your DMV? What is your local DMV that has issued you the driver's license? Do you meet that particular state? So if you're in Oregon, make sure you go to the Oregon DMV website and check what the requirements, typically three months. And there is also your healthcare provider may have to give updates.
But I do tell them, find out the states that you're driving into. Now, I will say that the DMV website of all the states, the DMV websites can be a little tricky to find the information. I do tell them to go to the Epilepsy.com. This is a website run by the Epilepsy Foundation of America who are also one of the people who the consensus statement is from. They have a nice website. You can put in two different states and say compare, and it'll pull up a nice little table and give you comparisons. So if you live in Nebraska and you want to find out Nebraska versus Iowa, that's a nice way to know that. I do tell them that, ideally, it's always easier for us to say, "Oh, use the long." So if it's six months versus three months, it might be easier for us to say six months. But in reality is that extra three months may be a big deal for the patient. And so, you have to balance this.
The good news is that we do know that the risk of recurrent seizures and motor vehicle accidents for individuals kind of goes down with longer seizure-free intervals. And there is progressive reduced risk of recurrent seizures after 6 months and 12 months of seizure freedom. So once they're doing well, I feel a lot more safer. But it's trickier in that initial three-month period. And I do tell them that they need to know. There isn't great guideline on all this because technically it's the DMV that issued your driver's license that you should be following. But if you drove five minutes through your neighboring state and in the worst case had a seizure while that happened, it can get really tricky. And these are some questions that perhaps in the future we should try to have some kind of a national consensus on or some kind of national regulation or guidelines on. Because it happens with every state, people live in different states and travel for work in different states.

Dr. Daniel Correa:
Yeah, it's unfortunate that it's so complex to navigate. And you can imagine a family on a vacation from New Jersey driving down to Disney World in Florida and then having to somehow try to think through all the what ifs and all the stops. It gets really messy. So, at least, following your driver's license or the state you have a driver's license through. But in this consensus statement, and for our listeners, we will have both a link to a Brain & Life article that talks about the consensus statement and these updates. But then also, for anyone who wants that more detailed information, a resource link to the actual article and statement so that you can use that as a reference for you, your family, anyone else that you know that it may be helpful to.
And these are situations that sometimes can end up impacting many other medical conditions. So it's good to understand and have a sense of things that can impact driving. And one of the things is the recommendation towards individualizing that sense of risk or I'd say, really the real-world risk. And you were talking about, oh, we know from evidence that with increasing months that are of seizure freedom, there's less likelihood of a seizure. But what are some of the other ways that someone can determine or understand what their own personal individualized risk is?

Dr. Proleta Datta:
Absolutely. So in this consensus, they have a little, I think it's a table where they talk about favorable factors and unfavorable factors. And again, if you go through these for our listeners, you may realize that you may have a combination of some favorable factors and some unfavorable factors. And this, again, is why these decisions have to be individualized. So let me give you a couple of examples. So I already talked about how the longer you are seizure free, there is progressive reduced risk, especially the risk of recurrent seizures and risk of motor vehicle accidents go down after the 6 or 12 months of seizure freedom. But there are some other favorable factors as well. So one of them is in fact having those... Sorry, let me correct. If you're only having focal seizures without any impaired consciousness or what we call focal aware seizures or focal seizures with preserved consciousness and they don't interfere with motor control. So if you're having only those type of seizures where you don't lose awareness and have no abnormal movements that interfere with your motor control, that may be a favorable factor.

Dr. Daniel Correa:
And Proleta, just to pause there, when you were saying and we describe impaired consciousness or retained awareness, we're just saying that it's not interrupting your conscious, or your awareness, or your attention to the things going on around you?

Dr. Proleta Datta:
Absolutely. So your ability to actually look at all the cars where you're driving, operate your car. So you make a great point, though. When patients ask me, I tell them, would you be able to pull up your car to the side if you were on a freeway while you're having this focal aware seizure or aura? Sometimes patients will say, "No, it's very overwhelming feeling, I cannot." And then I would say, "Then you shouldn't drive even though it is a focal aware seizure." And sometimes patients say, "No, I can. It doesn't bother me." And then just to make it more nuanced and give another example, some people can have focal aware seizures that affects their vision. So they're aware, they're conscious, they're not having abnormal movements, but they may see something in their visual field. That can absolutely impact your ability to drive. If you're driving and suddenly your vision is blurred, even though you're not losing consciousness and you're aware, that may make it very difficult for you to pull up to the side of the road successfully.
So again, my favorite word is always nuance, it has to be individualized. So while you have that favorable factor, what type of seizure you're having is really important. Another thing that maybe in your favor is that you're only having seizure, so your seizures are well controlled on your current medications and may have only occurred or what we call breakthrough seizures when somebody is making a medication change. Let's talk about some of the unfavorable factors because those are sometimes easier to pin down. So the biggest ones commonly are previous substance use, non-adherence with medications. If you've had prior crashes due to seizures, if you've suddenly had increased seizures in the recent past from your previous baseline, which is obvious. If your seizures have been resistant or refractory to multiple seizure medication trials. And if you're having seizures that you don't even know that are occurring. So often, if a person is not aware, they may be in fact under-reporting how many seizures there have been.
And so, sometimes I will talk to their family members or caregivers. And this patient may say, "Oh, I don't have any seizures. I haven't had any seizures in the last three months." But their significant other or their parent may say, "No, you had one a few days ago where you kind of zoned out." And so, getting this kind of history does help categorize how many of these unfavorable factors. Some of the other unfavorable factors they talk about in this position statement is if you have what we call a structural brain lesion. So it's something like stroke, a tumor, or some kind of brain disease which may worsen over time like a malignancy or a dementia like Alzheimer's disease. So these are some factors you can look at and decide are you in the more favorable or unfavorable group. But I will say realistically, you may have a few of each. And so, I really recommend having a good discussion with your healthcare practitioner about what are your chances of being able to safely drive.

Dr. Daniel Correa:
And here I totally acknowledge for our listeners, we're using a little bit of some technical language. And even when we're talking about favorable and unfavorable, well, here we're just talking about the potential risk of having seizures while driving or favorable ends in increasing the likelihood of a longer time between seizures and better seizure control. These are not at all anything that's a comment on any person as an individual or even as to the quality of the aspects of their seizures or they themselves or anything like that. It's just the way the table is made in the book or in this consensus statement as favorable and unfavorable. And Proleta, how do you handle the time of day that someone has their seizures historically and when they're driving?

Dr. Proleta Datta:
This is a very, I wouldn't say favorite, but is a very contested or discussed controversial topic. So what Daniel you're referring to is what we often talk about as nocturnal seizures. So let me give you a story. So say you have a patient who has only seizures out of sleep, so they don't have seizures during the day. It's only when they're sleeping that they have seizures. And so they tell you, "Well, currently for the last year, I've not had any seizures while I'm awake. And obviously I'm not driving when I'm sleeping. So though I haven't been seizure-free three months, they've only occurred at night." So there are a couple of things that I take into consideration. So we need to definitely first prove that this is happening because sometimes, again, this is not a judgment or moral value on the patient.
Sometimes patients truly don't know, and it's not anybody's fault. Epilepsy is a disease. It's tricky. The patient may not know that they're having small seizures during the day and maybe they only know they're having the seizures at night because the nocturnal or nighttime seizures while they sleep are bigger convulsions. And so they're aware of that. So sometimes we will get some testing like an EEG, but an ambulatory EEG, so one they can take home on their baseline medications and see what is the burden of their seizures, what do their brain waves look like? Sometimes we may do this in the hospital at our epilepsy monitoring unit. So the first thing is to confirm that the patient is not having some unknown seizures during the day. And then the second thing is to, once we confirm they're only having nocturnal seizures, they're not having any during the day, you can potentially make a recommendation to the DMV. And hopefully, the medical advisory board there that this patient could drive.
However, I will also add in some more additional advice that I tell my patients. Make sure you do sleep for a good period of time. Don't suddenly take a job where you're working the night shift and you're switching around your sleep-wake cycle. Let us know, that may affect how your seizures respond. Make sure you are having a regular circadian rhythm. Make sure you're not starting any new medication. And this could be for anybody, if you're starting new medication that affects your cognition and it makes you drowsy, that may affect how we decide how long you shouldn't drive rather. So it is tricky. And so, while the short answer is I often say yes, maybe. But again, there's a couple of steps I usually recommend before I give the all clear.
And again, I tell my patients, I do have the world's best patients that if you suddenly feel like you're not sure if you had an event during the day, let us know. The worst thing you want to do is allow someone to drive and not knowing what their baseline seizure frequency or seizure types are and put them in a dangerous situation. But you also want to respect the person's personal freedom and individual seizure type. So it is a balancing act. I feel like every question patients ask me, my answer is always, it depends.

Dr. Daniel Correa:
Yes, there's a lot of gray areas for the neurologist. And Proleta, not all of our individuals who are living through this situation are 40s and 50s and have experience with driving. This can actually end up being a question also for teenagers when they're getting their learner's permits, or already have their license but are managing this either a new event and/or an active epilepsy syndrome. Do the same seizure-free intervals apply with permits or at different ages? And what should the families consider in this?

Dr. Proleta Datta:
This is such an important point. So I see adults with epilepsy, which is basically the moment they turn 18. And for so many patients, there's a huge, I'm going to be able to drive, and they're so excited about it. Only to sometimes have their dreams crash when they have this breakthrough seizure and they're like, "Oh, no, I can't get my permit." But typically, both the first driver's license and then continuing to maintain, they follow similar rules. So again, for safety reasons, if you're having seizures that are not controlled, you should be, at least three months or more depending on the state you live in, free before you start to get your permit or drive. And/or once you get a driver's license, if you suddenly have a seizure, I'm going to call them breakthrough seizure that you didn't expect, you should stop driving, again, for the period of time that is recommended by your state. So it is similar.
I don't know if there is a specific rule about that you can take the written or the computer tests, sure. But actually, driving, it can be dangerous even if there's somebody potentially in the car because there's a lot of things to control. So again, I want patients to be able to drive, but I want this experience for them to be able to drive, be safe so that they don't have a negative connotation. I always remember young patients say they go out in the world and they're driving and they have say a seizure. That can leave a huge mark on them. And so ideally, yes, I want my patients to be able to drive and be independent, but I want them to do so safely and not worry every time they're behind the wheel, "Am I going to have a seizure? What am I going to do?"

Dr. Daniel Correa:
Yeah, I think so much sometimes about the impact of that first seizure in the public for so many individuals.

Dr. Proleta Datta:
No, and I think you mentioned somebody who's had seizures for many years have a certain experience, maturity to able to deal with that. For some of our young patients, this is such a big, this is such a life milestone. There's movies and songs made about being able to drive and have that independence and then suddenly to have something like this, take it away from them, it can be very demoralizing. And so, again, it's not anyone's fault, but I think as the physician and as a parent as well, I always want to make sure that this experience for them, their foray into independence isn't marred by something that could potentially have been prevented. Again, you can't prevent everything obviously, but if we can give them good guidance and give them a chance that they're starting to drive when they have all the favorable factors, they've been seizure-free for several months. That's going to give them so much more confidence.

Dr. Daniel Correa:
And we've talked about in the past in terms of seizures and epilepsy, seizure is a symptom of the epilepsy. It can have various different triggers. How is it different when we're considering if the seizure was triggered by an illness or something else?

Dr. Proleta Datta:
So let me give a couple of examples. So, Dani, what you're talking about is provoked seizures, right? And they talk about this in this consensus as well. So if you have a provoked seizure, so a provoked seizure is one where the seizure can be attributed to a provoking factor, which is very unlikely to reoccur in the future. For example, say the seizure happens in the setting of a patient having a really bad infection and a high fever, and they were in the hospital. And this is really unlikely to recur and the person's never had a seizure before. They potentially may not require this seizure-free interval before they resume driving.
However, if say the person has had a seizure in the setting of something that could be a provoking factor but may recur, so something like, for example, alcohol withdrawal. And if the healthcare practitioner is concerned that this may be recurring in the patient, even though one may argue that it's technically provoked, the practitioner may recommend having a seizure-free period. And this kind of ties into what one of the really important recommendations this position statement makes is that there should be medical advisory boards that together with the treating practitioner and the DMV make these individualized recommendations. Because it can be different for different patients.

Dr. Daniel Correa:
I think that's a very different situation from someone who's on a stable treatment or therapy of anti-seizure medications and then has a seizure as what we would describe often more as a breakthrough.

Dr. Proleta Datta:
Right. So when we define epilepsy, we often talk about unprovoked seizures. So the patient didn't have any specific provoking factor that caused that seizure. Now it's important to also talk about something like seizure triggers. So this could be a person who has known epilepsy who is doing well, but then has something that can increase their sleep deprivation or missing medication, things like that. That is different from a provoked seizure. Remember a provoked one where there is an attributed factor that causes seizure and it's unlikely to recur and the person didn't have any seizures before. But epilepsy is when the person has unprovoked seizures, even if everything else was fine, their brain has an abnormal network that is causing these seizures to recur. But even those with epilepsy and typically, unprovoked seizures, even if they've been seizure-free for a while, can potentially have breakthrough seizures where there is something else that's increasing their seizure risk. So a lot of technical fancy terms to get through there.

Dr. Daniel Correa:
But what about the challenge we will run into sometimes of the not yet diagnosed event? Often, neurologists will get questions or doctors will reach out, "Oh, this person had a loss of consciousness." Which we're not really sure what the cause is of yet, if it was related to their blood pressure or something else. Or they had a loss of control or their motor movements or maybe this episode of confusion that doesn't fit with something else they can already explain it with. How do you handle talking about driving restrictions in that situation?

Dr. Proleta Datta:
So the way I kind of explain it to the patients, actually I will thank the DMV's forums for this. If you look at the DMV forums for most states, the statement often reads seizure-free, and then they'll put a slash and say loss of awareness or consciousness. So I tell my patients, we want you to be safe and I drive the same streets they drive. I want to be safe too. I don't want you to have an accident. I don't want to have an accident. So if you have an event where you have impaired awareness or consciousness or abnormal movements, whether they're because of seizures or whether they're because of something else, you are at risk of losing control of the vehicle and having an accident. So it is important that we figure out why this is happening so we can prevent that. But we also, the recommendation is that there should be a, I will say, event-free period at this time, even if it's the first time they're having it.
Because one, you don't know if that was a seizure or not and if it's going to recur, but if there's something else that's going on. Say even if it's because they have an abnormal cardiac, like a heart rhythm that they lose awareness to or some kind of, say they have diabetes and some kind of metabolic syndrome where their blood glucose suddenly goes up. All of those can risk you having an event where you lose control over your vehicle and it takes a while to figure out what it is and make sure they're on the right treatment. So it's not just seizures. The DMV has kind of helped us here where I tell them it's about safety. And so, at least in Oregon, I say at least three months from that last event where you lost awareness, lost control for their safety as well as public safety as well. So typically, even if it's a nuanced seizure or nuanced event with loss of consciousness, the rules and guidelines and the recommendations are somewhat similar.

Dr. Daniel Correa:
And do you think it's enough for someone after they've had this discussion with their doctor just to put that three-month or that six-month date on their calendar and once it passes, if they haven't had any events, they're good to go? Or what should they discuss with their neurologist?

Dr. Proleta Datta:
So again, state-to-state guidelines there are, so let's talk about patients and then I'll talk a bit about practitioners because there are a couple of nuances there. So again, yes, if you had an event on January 1st and you tell them. Okay, three months later, there is another form most states require where the healthcare provider, and this technically doesn't have to be a neurologist by the way. This can be their primary care doctor, can be another nurse, it can be a healthcare provider who is seeing the patient in the last few months, signs off and says last event and puts a date, and then allows them to drive. And often I tell patients, when you submit this, the DMV may send you the form or you can go to the DMV's website and sometimes print these forms out and bring it to us so we can sign it.
However, from the practitioner's point of view, there's a little bit of nuance. There are a couple of states, there is a few, but there are a couple of states that have mandatory reporting. So California, Delaware, Nevada, New Jersey are required to report conditions where there is any lapse in consciousness including epilepsy. And then, in addition to those four, practitioners in Oregon and Pennsylvania are required to report a much wider range of impairment. So not just say seizures, but also if they have poor visual acuity, visual field loss, dementias, things like that. So this is currently what the rules are. One of the recommendations that this position statement makes is that healthcare should be allowed to but not mandated to make these, report drivers who pose this risk. And it's kind of interesting when we think about the practitioner-patient relationship.
The reason is that they've noticed that even though healthcare providers may report these unsafe drivers, this does not necessarily reduce accidents or fatalities. And in some cases, may potentially increase the likelihood of the people or patients who are driving, say without a license or having seizures to withhold this information from their doctors and providers. And in that case, potentially worsening their risk and their quality of life. And so, absolutely, healthcare providers should be allowed to report this, but mandating it may not be the best path forward. But coming back to the patients, I always say, yeah, mark the date, make sure you print out the form and then follow up and make sure that your provider signs off on that.
And also keep note, have you had any events, be vigilant during those three or six months or wherever you are. And hopefully in that time, you've been diagnosed with what the disease is, your medications have been regulated. So absolutely. I do have some of my younger patients are very good about adding dates on their smartphones and having checklists. And with older patients, sometimes they'll have a diary, but nowadays everybody's very fluent with their phones setting an alarm or a date even a week before that to remind them to check in and say, "Hey, we need to submit that updated form."

Dr. Daniel Correa:
And I think in that process we've talked about in certain situations the importance or the potential tool of having the ambulatory or the take-home EEG monitor. Sometimes we bring patients into the hospital for overnight monitoring with the EEGs. I think when we talk about those and where those fit in for each person, sometimes people ask, why can't you just test how I do on a video game or virtual reality? Where are we with that?

Dr. Proleta Datta:
There are some really cool studies and I don't know how much time we have to go into that where they've actually tested patients with epilepsy playing driving simulators, even better than video games, actual driving simulators. And there is evolving data is the short answer. But the long answer is we are seeing that even little bursts of activity can affect attention. The data is coming out, it's going to be interesting. And it would be awesome to have a driving simulator attached to an app where they can just go in with the EEG and play this. I don't think we're there yet, but I feel in the next couple of years we'll have some really cool information. One thing to remember though, because I've had multiple patients tell me that they're fantastic at video games, yes, there are some similar skills, attention, ability to, I don't know, move your character through these mazes, whatever.
But it is a little bit different in driving. And the one thing I tell my patient is there is no redo. If your character falls into something, you don't get another heart or life to go back and redo it. So there is no redo. So we have to be very, very, very serious about this. We can't take any risks. You don't get a second chance, a third chance, you can't restart the game. So video games are great, but real life, there are no redos. But coming back to the research, there's some great work coming out from looking at patients getting EEG while they're on driving simulators. And we are finding that sometimes long bursts of spike activity, which potentially are not full seizures, can impact some aspects of awareness, attention. So it'll be interesting to see how that data evolves and how that is used in our real-life advice that we give patients.

Dr. Daniel Correa:
So we're working on it, we just don't have it all there yet.

Dr. Proleta Datta:
Yes.

Dr. Daniel Correa:
And we've seen from research that has looked across different types of populations that stopping driving can be linked to more depression and anxiety. And really that has a lot to do with the change in the need for mobility and social supports. And older individuals who stop driving for other reasons. And this is kind of broadly outside of epilepsy, stopping driving increases that social isolation. And in the UK, they've seen that better access to transportation or public transportation correlates with lower loneliness and really suggest that we need more local options. So tell us some about what you tell your patients about life without the car keys.

Dr. Proleta Datta:
There is a lot to life beyond the car keys, I agree. But I don't want to minimize that. If you live in a big urban city where there is public transport and you can get around to grocery shopping, meeting with your friends, coming for your doctor's visit with maybe relative ease. But if you live in an urban area, say you grew up in an area that requires you to drive to get to the nearest bus stop. Getting to your friend's place, maybe a 30-minute walk. I'm not saying a 30-minute walk isn't good, but that changes your life. And so, it is important that we have better options. And one of the recommendations this position statement also makes is that there should be, it encourages that there should be alternative methods of transport, either from local or national government agencies. And I really hope that we can offer these.
For patients coming to clinic visits, there are medical transports, but again, there are several steps that need to be done often by the patient and their care providers to do this. For even patients who are not by themselves, if they have a family member, or they have a significant other, or parent, or whoever. For them, it also adds the burden not to the patient but their caregivers or family members to have to take them where they need to go. So it is hard. And then, I do encourage them to however, reach out. Nowadays, we have a lot of online options. Some of my patients will do a few tele visits in between in-person visits to prevent them from having to have medical transport or have their loved ones or care providers drive them to clinic, especially if they live far. There are a lot of options where if there's local communities that don't require them to walk distances.
I also think it is really important for patients who are able to work and want to work to be given opportunities where they're able to have some kind of public transport if it's available, but also an alternative method of transport to get to work. Not all patients can live five minutes from where they work. So it would be really... I absolutely echo what this position statement says about having local governments at the level of city, state, or nationally, having agencies provide patients some kind of transport. And this is not just for epilepsy, as you mentioned, there are so many other conditions where a person may not be able to drive. I do think the quality of life of our patients would be greatly improved if these options are looked at and available to them.

Dr. Daniel Correa:
And sometimes the community is not actually aware that epilepsy and its impact on your driving and your social mobility is covered on the American Disabilities Act. And so, they can be eligible for some of these other medical transports or other paratransit options that are available in different areas. In our guide and episode notes, we'll have some links to resources. For more information about that across all disabilities within epilepsy specific, the Epilepsy Foundation has a helpline that has lots of added resources and can help you navigate some of the options that are available to you. There can be ride vouchers, there are travel assistance funds. And then each state and local areas have the other different resources, and often you can find out about that through the local 211 line if you call 211 and finding out about medical care and other resources like transportation access programs. Well, Proleta, I wanted to really thank you for taking the time and joining us here on the Brain & Life Podcast and everything that you're doing to actually say there's more that's unique to you and listening to each patient and individualizing that discussion.

Dr. Proleta Datta:
Thank you so much for having me, and I really hope that, I'm glad that the position statement has come out, and I really hope that this mobilizes, if you will, our local and national governments to do more and have more options for our patients. I'm definitely biased, but epilepsy patients are so amazing, so unique, and have so much to offer and deserve to have their independence and a good quality of life. So again, thank you so much for having me on this podcast.

Dr. Daniel Correa:
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Dr. Katy Peters:
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Dr. Daniel Correa:
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Navigating Epilepsy: Driving Safety and Independence with Dr. Proleta Datta

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