[00:00:00] Pete Waggoner: This is Neurology Now, the podcast that explores the fascinating and complex world of neurology. Join us as we explore the human brain and beyond with expert guests who share their knowledge and insight. Welcome to the Neurology Now podcast and on today’s show we welcome Dr. Natalia Dorland of the Minneapolis Clinic of Neurology.
[00:00:20] Pete Waggoner: Today, we’re going to be talking about epilepsy, understanding it a little bit more. Also, we’re going to get into living with epilepsy and some more on the awareness and advocacy part of it and support that goes along with it as well. Dr. Norland, good morning to you. Thanks for joining us here.
[00:00:37] Natalia Dorland: Good morning.
[00:00:38] Natalia Dorland: Thank you so much for allowing me to participate in podcast. Appreciate that.
[00:00:42] Pete Waggoner: It’s our pleasure and our honor for sure. So before we get into the nuts and bolts of understanding what epilepsy is and those things, let’s just understand a little bit about you, which led you into the medical field. Can you tell us what some of the key things in your life were that led you to say, Hey, I want to do this?[00:01:00]
[00:01:00] Natalia Dorland: In my teenage years, I came across family members getting sick or my loved ones getting sick, and I felt that I wanted to know what to do, want to know, how to help people. And I think that’s definitely what started the process. And then once I went into the world of medicine, I discovered how fascinating it is, and later on, I kind of learned that in my mind, the most interesting, neurology is specialty.
[00:01:32] Natalia Dorland: Because as I tell my patients, there’s artificial heart, artificial kidneys, et cetera, but there is no artificial brain. I guess we do have artificial intelligence now, but they’re still not replacing the actual brain. And it’s a very, very complex structure. A very cool, I would say, subject to learn. I don’t think we have a full understanding of how brain works, even up to date with all our technology with so [00:02:00] much understanding we already have.
[00:02:01] Natalia Dorland: And that’s what making it very interesting. There’s so many more things to come. And as we’re learning more, we’ll know how our brain works. We’ll know so much more that we’ll allow us to do more things.
[00:02:15] Pete Waggoner: That’s incredible. So my follow up question was going to be, is there’s still more to be learned with the brain and how it works?
[00:02:23] Pete Waggoner: I don’t even think your average person who doesn’t spend time in the area that you do
[00:02:28] Pete Waggoner: really understands how we say in our open, how incredibly complex it is. Even you as well, first in the field are you still, there’s plenty to uncover there.
[00:02:37] Natalia Dorland: Oh, yeah. Then once you learn more, it’s like you understand like how much more we need to know.
[00:02:42] Pete Waggoner: So then that must be like a never ending, well, it’s called job security, you know, is what I would say for you, right? Because it’s never ending. But what led you into the world of epilepsy and what got you interested in that?
[00:02:54] Natalia Dorland: Yeah, so I think epilepsy is the area of neurology that, in my [00:03:00] mind, is one of the most mysterious kind of areas, and it’s purely about how brain functions and what goes wrong with the function.
[00:03:11] Natalia Dorland: You know, for example, most people are very aware of the strokes. And it’s one of the most common neurological conditions. But in reality, brain suffers secondary to the blood vessel problem. Versus epilepsy, it’s the condition of the brain itself. And it’s affecting people’s life to a very significant degree.
[00:03:31] Natalia Dorland: However, compared to some other conditions, when you get people seizure free, it definitely making changes in their lives. And I’ve seen it and that’s what drives me to work with my patients as hard as I can. And sometimes easier than sometimes it’s much harder, but to get them to that place.
[00:03:52] Pete Waggoner: What would you say the number one difference is between other neurological conditions and epilepsy?
[00:03:59] Pete Waggoner: Is there one [00:04:00] layman’s term that would say it’s different in one area or so?
[00:04:04] Natalia Dorland: I mean, it’s different in one of the conditions that’s sometimes harder for a patient to understand themselves because it’s affecting their brain function. And when the brain is not able to perform normal function, you’re not able to record what’s happening.
[00:04:21] Natalia Dorland: So it’s like we discussing it, but then patients can connect sometimes, and that’s making it more challenging. But once you’re able to get them, do better, that benefits not just them, but their families and loved ones, their whole life.
[00:04:36] Pete Waggoner: Is this something that is diagnosed early in life, later in life, middle life?
[00:04:40] Pete Waggoner: Where do you learn of having epilepsy?
[00:04:43] Natalia Dorland: Seizures can start at any age. That’s another fascinating part of this condition, too.
[00:04:49] Pete Waggoner: Is this something that is hereditary or are you not able to draw a lineage to that?
[00:04:54] Natalia Dorland: That will be typically a number one question. When someone has a seizure, why did [00:05:00] it happen? And from this standpoint, that comes to like a definition of seizures and seizures being divided into different types.
[00:05:09] Natalia Dorland: And that’s what helped us to understand why a seizure happens in the first place and what we can do to make sure they don’t happen in the future.
[00:05:17] Natalia Dorland: So, what is a seizure? How I typically explain to patients seizure, it’s a type of electrical disturbance in the brain. That’s my personal definition. It’s not maybe a physical definition, but I think it’s easier to understand.
[00:05:29] Natalia Dorland: Our brain cells use electricity to function, and so they send each other electrical signals. What happens with a seizure is those electrical signals go off track. It’s kind of like arrhythmia, but happens in the brain, not in the heart. And once the electrical signals go off track, they interrupt the normal electrical firing and the brain has to shut itself down and restart like a computer to stop the seizure.
[00:05:53] Pete Waggoner: Rebooted.
[00:05:54] Natalia Dorland: Rebooted, yeah. Depending on where a seizure happens in the brain. Is it in one [00:06:00] spot, versus all over the brain at once. That would make a division of the seizures into what we call focal onset and generalized onset. And that’s the major division of the seizures. And it actually helps to further determine the type of epilepsy that the person has.
[00:06:19] Natalia Dorland: And when do we call seizures an epilepsy? It’s when a person would have at least two unprovoked seizures, and they have to be divided by 24 hours apart. Or sometimes we can diagnose epilepsy with just one seizure, but then we see other features that we know that It’s just the tip of an iceberg and there can be more to come.
[00:06:40] Natalia Dorland: Sometimes it’s another, like the third type definition, the diagnosis of epilepsy. If we see like there are changes that would fall into like epilepsy syndrome, which is not just seizures, but other manifestations as well. So another type that kind of looking from completely other area will be [00:07:00] provoked versus unprovoked seizures.
[00:07:02] Natalia Dorland: So provoked seizures, those are seizures that happen in association with some sort of insult to the body or brain. Anyone can have a seizure with a certain circumstances happening. Like, for example, if someone’s blood sugars run really low or extremely high, or if someone’s electrolytes are off, like sodium becomes super low, someone has been using illegal drugs, or they’ve been drinking alcohol and stopped drinking and gone through withdrawal.
[00:07:29] Natalia Dorland: So those are examples. The brain itself is Okay, but there are changes in the body and around the brain that made it easier for it to go into a seizure. However, the unprovoked seizures are the one that person was just in a fine, right health and had just had a seizure. And that’s when it comes to the cause of five dollar vortex etiology.
[00:07:50] Natalia Dorland: That’s what we use. So the cause of the seizures and those. The reason for us to do all those testing that we do and typical tests that we [00:08:00] perform will be that taking the pictures of the brain and MRI will be like a test of choice because it’s on a lots of details. So we’re looking for any structural abnormalities and brain like someone has a brain tumor or they had a stroke Which healed with the scars that’s causing this abnormal area in the brain, or they have a developmental change in the brain where there is an abnormal developed part of the brain.
[00:08:27] Natalia Dorland: So then we’ll do a test called EED, which stands for electroencephalogram, a recording of actual brain electricity. Okay, it’s kind of like AQG, but down on the head. It’s like a snapshot of how brain is actually working. What we’re able to see, the electrical impulses, and in the case of epilepsies, we hope to see the electrical changes of those abnormal electrical firings that I was talking about earlier.
[00:08:53] Natalia Dorland: There are also other tests, there is a blood work done, there’s a genetic test available, [00:09:00] because there’s a whole area of epilepsies that are genetic. I think it’s typically more applicable in a pediatric world now than adult world. And then more tests that potentially can be done. It’s getting into kind of more detailed questioning of getting more to the bottom of how you start, et cetera.
[00:09:18] Natalia Dorland: But that’s what the test I mentioned, that’s what typical the start platform.
[00:09:23] Pete Waggoner: A couple things for you there that I wanted to just follow up on, which I’ve always wanted to know. So I had a friend with epilepsy, but never once when I was around him did he ever have any seizure activities or anything like that.
[00:09:38] Pete Waggoner: Is there a situation where maybe they come in bunches, or they spread out, and they slow down? Is there any rhythm to how these occur? Or does that play back into the risk factors of what you were saying? The sodiums in the world and things getting knocked out of balance. But do you see any patterns, I guess, is the question.
[00:09:57] Natalia Dorland: What we’re talking about are the sodium, etc. That [00:10:00] was provoked seizures. So that’s if those are eliminated, the person will not have seizures. If we’re talking about epilepsy, that’s a different situation, right? There are known, what we call “triggers” for epilepsy, sort of misfire. And there’s a whole list of very, very known common triggers.
[00:10:18] Natalia Dorland: For example, sleep deprivation. That’s a very common trigger. For example, what happens when we do not sleep, those metabolites in the brain that produced when we awake, they’re supposed to be cleared up while we sleep and they stick around. And for example, one of them is glutamate, which is activating substance.
[00:10:37] Natalia Dorland: If you’ve seen kids who eat too much sugar and they all revved up when they’re sleep deprived. Then any illnesses like being sick with cold, flu, bacterial infection, etc. Alcohol is known to influence. Unfortunately, it works on the chemicals of the brain that regulate the state, how Brain cells work.
[00:10:58] Natalia Dorland: Stress is, unfortunately, a [00:11:00] very common trigger. For seizures specifically, flashing bright lights are known to be triggered. For the seizures as well, there are certain foods and most of the time, in a nutshell, it’s like sweets, sugars. Because they over activate the brain, they trigger them. Actually, low blood sugars, skipped meals, can trigger seizures.
[00:11:20] Natalia Dorland: And having too much caffeine, also one of the risk factors. Not drinking enough water is always, like we keep talking about it. And then hormonal changes, especially in women. As well known to trigger seizures and then when it comes to medications is one of the known factors to trigger seizures and then there’s a certain risk with taking certain other medicines that can interfere with person’s anti seizure medications.
[00:11:48] Natalia Dorland: We don’t call them anti epileptic medications. I mean, you probably heard that word, but the more accurate term will be anti seizure medications because the medications they don’t alter [00:12:00] the brain cells themselves.
[00:12:02] Natalia Dorland: What they do, they change the chemical environment around the brain cells and help them to not misfire electrically.
[00:12:10] Pete Waggoner: Okay, so as far as the current state of epilepsy and the treatment options, we’re kind of going down that road. And when we look into the current state of epilepsy treatment options and advances that have been made in recent years, if you look back to where this was, let’s say 20 years ago, to where it is today, where do you see it right now?
[00:12:28] Natalia Dorland: So we do have quite a few advances compared to 20 years back. We do have more anti seizure medications and we do have more surgical treatment options as well. So regarding anti seizure medications, we gained quite a few of them. We have about, give or take, 25 anti seizure different pills. And until most recently, what the main difference was is the effectiveness of the neuromeds have been about [00:13:00] similar to the old medications, but minus concerning side effects.
[00:13:04] Natalia Dorland: Until just very recently, the success rate with anti seizure medications have been roughly over 60%. So about one third of patients would continue to have seizures, despite being on a very good anti seizure pills. But you were asking about most recent advances. We did get, for example, one newer medication called Cenobamide, which did show pretty significant difference with getting a certain percentage of patients who’ve been very resistant to treatment.
[00:13:35] Natalia Dorland: I mean, not they’re resistant, they’re epilepsy resistant, right? But there’s a certain percentage of them went seizure free, which was very amazing news for us as neurologists. As far as I know, there’s still certain medications they have been worked on. I guess there will be more to come. Not that I know like something is coming immediately, but I know that they’re still working on coming up with a better anti seizure medication.
[00:13:59] Natalia Dorland: [00:14:00] One of our doctors in our clinic, she’s involved in research and that’s why I know I’ve been involved in research with a certain degree. I’m doing more clinical work, but there are several medications that have been tried and tested, and we’re still trying to get that ideal medication that would get the seizures eliminated and patients would feel great on it.
[00:14:19] Natalia Dorland: We do have quite a good options. Obviously not every medication works great for every person. So it’s a work to sometimes to find the right treatment options and we’re still working on getting more of it.
[00:14:31] Pete Waggoner: In terms of seizure reduction, do you feel like it’s better with these new advancements at all?
[00:14:37] Natalia Dorland: So what we’re able to achieve, about two thirds of patients, we’re able to get them seizure free with them taking medication.
[00:14:44] Pete Waggoner: Sometimes people get a little lazy on stuff. I would assume that’s part of the process.
[00:14:48] Natalia Dorland: So if patients prescribe medication and they take it, two thirds of patients will go seizure free. And with the newer anti seizure medication options, there’s a better chance of them [00:15:00] actually feel fine on their anti seizure treatment.
[00:15:02] Natalia Dorland: The main concern that we typically have is we’re happy when patients go seizure free, but about a third of patients are not able to achieve the seizure freedom. And that’s when we start to find a combination of medication options or look into the surgical treatments that I was talking about.
[00:15:21] Pete Waggoner: Well, then in terms of other lifestyle changes and things people can do, I think we kind of covered that earlier where obviously, drink water. I don’t care what we’re talking about. Drink water. Everybody’s like, ah, yeah, I need to drink more, but drink water, obviously get plenty of sleep. Also sugars, avoid those as much as you can and don’t bury the caffeine and that pretty much.
[00:15:42] Natalia Dorland: And take your pills.
[00:15:43] Pete Waggoner: Yeah. Take your pills. And then some semblance of strength training, exercise, those types of things don’t hurt either.
[00:15:51] Natalia Dorland: Overall, those will be great as well, because as I mentioned, stress was one of the factors that known to trigger seizures. And one of the [00:16:00] best way to counteract the stress is the physical exercise. That’s a natural way to counteract the stress, because over the centuries that. existence of humanity, we were built to run away from our stressors because historically it’s been like a tiger attack or something like this.
[00:16:16] Natalia Dorland: So we’re built into, we need to run away from it. Unfortunately, we can’t run away from our modern stressors, right? There’s nowhere to run from them. However, our bodies still would respond if you start doing exercise regularly. This will kick in those embedded responses and will help to get those hormonal levels back in place and will help with well being, not just your body, but also your mind.
[00:16:41] Natalia Dorland: And which in turn, turns into helping your body to deal with all the health conditions, including the seizure control. Well, we’ll help your blood pressure and heart health, et cetera. So, comes with additional benefits. Example, that good cholesterol known will counteract the bad cholesterol that blocks the blood vessels that [00:17:00] goes up when you exercise.
[00:17:01] Natalia Dorland: Another example of how exercise is really good for you.
[00:17:05] Pete Waggoner: These are all almost common sense things we’re talking about that fit into everyday life. Really, you follow those things and you’re usually in a better spot. So let’s talk about networks and resources and those types of things that are available for individuals.
[00:17:17] Natalia Dorland: Absolutely. Actually, can I just add one quick thing for the patients with epilepsy? In addition to those very common things, the little bit uncommon recommendation that we typically give is to be cautious in life. For example, avoid swimming in the swimming pool by yourself, avoid climbing ladders or heights.
[00:17:37] Natalia Dorland: No roof climbing, avoid being next to the open flame, et cetera, will prevent, if the seizure would happen, prevent the person from getting themselves injured. And that’s why there’s restrictions applied to driving as well.
[00:17:50] Pete Waggoner: Do seizures come on fast? Can you say, Oh no, I can feel it’s coming or does it just bang happen?
[00:17:55] Natalia Dorland: So excellent question. So seizures sometimes have a [00:18:00] warning, the official term called aura. Those are type of feelings or symptoms that some people get prior to seizure start. And it can be like a rising sensation in the stomach, unusual kind of feeling sensation. It very depends on where the actual seizure starts in the brain.
[00:18:18] Natalia Dorland: So that’s what gives the aura warning, but then it goes into a seizure, a person would sort of lose memory of what’s happening. Unfortunately, there’s quite a big percentage of seizures that just people would sort of wake up and it’s like something has happened and they don’t know what. So many people don’t get warning.
[00:18:35] Pete Waggoner: Do you have people like lay down or do they fall down? How do you get through it the best? And if you’re supporting that.
[00:18:42] Natalia Dorland: Unfortunately, many, many times people do because many types of seizures affect the body muscle tones. And that’s one of the features that we are looking at to know what’s happening with the seizures.
[00:18:54] Natalia Dorland: That’s how we divide seizures in a different types because seizures can cause two [00:19:00] types of manifestations, right? They can alter the awareness, make person unconscious, or basically like lose consciousness, like they stare off into space, right, and not connected with the world. The second type of manifestations will be changes with the body, and that will be, depending on that, also goes into definition.
[00:19:19] Natalia Dorland: So you probably have heard word like tonic clonic seizure, right? That’s basically tonic means the body turns up, clonic, it jerks, like rhythmically twitches. Then there’s a myoclonic, for example, seizures. That’s when the brief jerks of the arms or legs. There’s atonic seizures where the people just lose all muscle tone and fall.
[00:19:39] Natalia Dorland: Those are… Not as common as the first ones I mentioned, but with many seizures, unfortunately, patients may fall down. And if that happens, there are other people around the person. That will be the best time to support the person who is having a seizure. And the main recommendations for that will be to turn person on the side.
[00:19:58] Natalia Dorland: Support head, because [00:20:00] many times contraction movements kind of go through the body, people can bang their head and get injured. So important to support their head. Most recent recommendation will be not to put anything in their mouth. Because unfortunately, because of the contraction of the chewing muscles, the people clenching their teeth very hard and they bite their tongue.
[00:20:19] Natalia Dorland: Before people used to know, Oh, I need to put like a spoon or something in the mouth. It’s not recommended. Because what happens? People bite off the spoon or someone’s finger and choke on it. Unfortunately, worse than biting the tongue. I know it’s typically very disturbing experience, but it’s very important to attempt the seizure to know how long it’s going on.
[00:20:40] Natalia Dorland: And most the seizures are able to resolve on their own, because brain is working hard to stop in the seizure. If seizure is not stopping after five minutes, that’s the definition, medical help definitely needed. So that’s why I’m saying the timing of the seizure is important.
[00:20:57] Pete Waggoner: If you’re rolling into the five, six [00:21:00] minute mark, now you should be concerned and getting help.
[00:21:02] Natalia Dorland: Correct. Yeah, especially if it’s a big convulsive seizure. Also, I also recommend if someone has trouble breathing with the seizure, if they hurt themselves like the fall and they crack their head and bleeding, that’s important to make sure you call help. Okay. If the seizure is short, and it goes away, it’s important to stay with person because people get dazed and not feel right. It’s important to make sure they settle. They’re not in a danger of injuring themselves. Important to kind of know with any seizures.
[00:21:33] Pete Waggoner: What’s out there in terms of support network and resources for individuals with epilepsy and their families?
[00:21:39] Natalia Dorland: There’s a support available, family, friends, etc. But more official, for example, a blind community. There are several resources exist. One of the common ones that we recommend is called Epilepsy Foundation. It’s a website with lots of great information. For example, there is an Epilepsy Foundation of Minnesota specifically.[00:22:00]
[00:22:00] Natalia Dorland: It’s a lot of resources actually to read. All what I was talking about, like how to help a person who is having a seizure, et cetera, that’s all listed there. People can find it there. There are also community forums with online discussion groups on certain topics. There is also an epilepsy community called PatientsLikeMe, where there’s information about how epilepsy medications that other people tried and how medications work for them and side effects, etc. There is another one called WEB EASE. It stands for Epilepsy Awareness Support and Education. It’s a free online self management program for patients with epilepsy. The last one will be Living Well with Epilepsy. It’s an online community that was actually created by a woman with epilepsy, and there’s stories shared of patients with epilepsy, and there’s information on how to live well with epilepsy as well.
[00:22:57] Pete Waggoner: How about misconceptions? There are plenty of those along with [00:23:00] stigmas that are associated with epilepsy. What do you see those are like the most common and and how are they dealt with?
[00:23:07] Natalia Dorland: The most common is not to take the diagnosis seriously. And unfortunately, because of the Epilepsy in nature is an unpredictable, sometimes it would happen, that causes troubles for several areas of well being. There’s a lot of psychological changes that occur with a person. It’s interruption for work, their mood can fluctuate. And in the community, I think many people are not aware of what seizures are and what to expect with a person who have an epilepsy. I’ve just seen it when I have a patient who come and they have like a family member with seizures or epilepsy.
[00:23:49] Natalia Dorland: It makes significant difference. Like they have a different outlook on this whole approach to condition versus someone who never dealt with seizures and not aware of it. They exist.
[00:23:59] Natalia Dorland: So, I mean, [00:24:00] people are aware, but they may not be aware of the types of seizures where they would think, oh, seizures only when someone falls down and shakes, but if someone just stares out into space and kind of gets their thoughts interrupted, then people don’t recognize it, someone is having a seizure.
[00:24:17] Natalia Dorland: Unfortunately, it’s been, the stigma has been about epilepsy for centuries. People used to believe that people are possessed by devil or some sort of evil forces, not realizing that’s the condition of the brain. I mean, it’s still present, even up to date, even though there are lots of efforts been done to counteract it.
[00:24:36] Natalia Dorland: There’s like International League of Epilepsy. There’s American with Disability Act, to name a few. Typically what’s helpful the most is we’re doing, November’s the Epilepsy Awareness Month. I think educating will be the most helpful. Once people know, then unknown becomes known.
[00:24:54] Natalia Dorland: Then it’s a sort of a different ballgame. And people have a very different approach to it.
[00:24:59] Pete Waggoner: Perception becomes [00:25:00] reality as opposed to just… Misconceptions. Do you think there will ever be a cure?
[00:25:04] Natalia Dorland: That’s what we’re working on. Once we know what starts those abnormal discharges happening will cure the epilepsy.
[00:25:10] Natalia Dorland: We don’t know that yet, but that’s definitely the focus of some scientists working on it. Absolutely. We will hope for it. We don’t have it yet, but we hope for it.
[00:25:19] Pete Waggoner: We kind of talked about where listeners could find reliable sources of information and support related to epilepsy when you mentioned those things, and we went through some of the things that you can do.
[00:25:30] Pete Waggoner: I think what’s interesting that I take away from this, it seems as though you have to have a lot of patience because it is unpredictable. You could be planning on going shopping or doing something in that your plans could change very quickly. You have to just manage that and deal with it. But you have a lot of tools in place that allow for a better lifestyle.
[00:25:49] Pete Waggoner: It sounds so much better today than it was for my friend years ago. That much is what I can tell you. That’s what I’ve gathered from this. So that’s great news.
[00:25:56] Natalia Dorland: And our goal is always for patients with epilepsy [00:26:00] to have normal lives. You can’t go shopping, you can’t do, go and do things. That’s why we’re doing all the tests and having all those wonderful pills and other treatments.
[00:26:10] Natalia Dorland: The whole goal is to no seizures, no side effects, and people able to live normal, healthy, as healthy as possible lives, back to work. back to driving, doing things in life. That’s the goal.
[00:26:24] Pete Waggoner: Well, let’s get it there. Dr. Dorland, your work is invaluable and appreciated and as was your time here on the podcast today.
[00:26:30] Pete Waggoner: So thanks for sharing your insights and thoughts on a great topic. We appreciate your time.
[00:26:36] Natalia Dorland: Thank you very much for the kind words. Thank you. Appreciate it.
[00:26:39] Pete Waggoner: My pleasure. And thank you all for joining us on this episode of neurology now, we hope you found it informative and engaging. If you enjoyed this episode, please subscribe to our podcast to stay up to date.
[00:26:50] Pete Waggoner: Help us educate our community and beyond. We welcome your feedback, comments, and suggestions for future topics. So please feel free to reach out to us through our website or [00:27:00] social media channels, that’s going to do it for today’s show. I’m Pete Waggoner, so long everybody.