The Silent Witness: Seizure Diaries, Missed Seizures & Epilepsy Care - Dr. Ewan Nurse, University of Melbourne, Australia
Dr. Ewan Nurse, epilepsy researcher and advocate, explores the truth about seizure diaries - from memory accuracy to missed seizures - and what it means for both patients and clinicians.
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Episode Highlights
Seizure diaries aren’t always accurate - many seizures go unreported or are misreported, with huge implications for diagnosis and treatment.
Research insights from “The Silent Witness” - Ewan shares data showing that over half of focal and non-convulsive seizures witnessed at home were not recognised.
Why this matters - improving seizure reporting is crucial for patient safety, quality of life, and guiding effective epilepsy care.
About Dr. Ewan Nurse
Ewan Nurse is a Principal Fellow in the Department of Medicine (St Vincent’s Hospital) at the University of Melbourne. He leads collaborative projects that bridge academic research and industry in the field of epilepsy. His expertise includes electroencephalography (EEG), clinical epileptology, and AI.
Full profile ewan-nurse
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Clip
00:00 Ewan Nurse
“58% of the focal seizures and 57% of non-convulsive generalised seizures (so these might have been absence or more minor motor generalised seizures) with a witness were not recognised by the witness."
00:14 Torie Robinson
Wow!”
Intro
00:15 Torie Robinson
Who here keeps a seizure diary, or encourages someone to? Well, today we’re diving into how accurate they really are - and the answers might surprise you! Did you know that many seizures never make it into a diary, even when there’s a witness? Or that sometimes people record things that aren’t seizures at all? These errors have huge consequences for people’s treatment and quality of life.
Joining me today is the brilliant Dr. Ewan Nurse from Melbourne, Australia - an engineer who specialises in EEG, epilepsy, and AI. We’ll be talking about his paper “The silent witness: The unseen gaps in eyewitness recognition of seizures”, and uncovering why seizure reporting is so challenging, yet so fundamental to improving epilepsy care.
If you haven’t done so already, please press the thumbs-up in this episode, comment below, and so subscribe to our channel, so that we can get way more people around the world - clinicians, patients, and the general public - learning facts about the epilepsies!
Meet Dr. Ewan Nurse - Engineer & epilepsy researcher from Melbourne
01:09 Ewan Nurse
My name is Dr. Ewan Nurse. So, I live in Melbourne, Australia. My background is in engineering, and I do research in a variety of things to do with the epilepsies. So, mostly EEG, clinical epilepsy, and a bit of AI.
01:25 Torie Robinson
AI, I think lots of people think of mathematics, and you say EEG, and most people think of doctors involved in that. So how do you fit into that picture?
01:34 Ewan Nurse
Yeah, so a lot of what I try and do is seizure detection from EEG. So, basically, instead of the poor neurologist having to sit there and read pages and pages of EEG, we make software to try and reduce the amount of time to read an EEG.
01:49 Torie Robinson
Yeah, because it often takes so, so long, I've spoken to loads of clinicians and neurophysiologists who are going “Oh my god, it takes forever.”, so you've got to make that a lot quicker, yeah?
01:58 Ewan Nurse
Yeah, yeah, that's the plan.
Why seizure reporting is fundamental for diagnosis & treatment
02:00 Torie Robinson
And so why focus on seizure reporting, specifically, in your work?
02:05 Ewan Nurse
Yeah, so, I mean, reporting seizures to your neurologist (or whoever it is in your care team) is a very fundamental part of diagnosis and treatment of the epilepsies, right?
02:17 Torie Robinson
Hmm.
02:17 Ewan Nurse
When you're describing your seizures and how many you're having, when they're happening, your care team is trying to process that information and come up with a diagnosis and come up with a treatment plan. Maybe what medications you should be taking, what dose you should be taking, things like that. Yeah, I really like focusing on the problem of reporting seizures because if we can improve how people with epilepsy report their seizures, hopefully we can improve their treatment outcomes, whether that's having fewer seizures, better quality of life, producing all those other side effects like brain fog, memory issues, things like that, so…
02:55 Torie Robinson
Aw!
02:55 Ewan Nurse
…it's really fundamental, right? It's that bridge between the individual and their care team, and making sure you're sort of optimising treatment.
Landmark study: only 1 in 3 seizures recorded during video EEG
03:03 Torie Robinson
Because heaps of us (and we were talking about this before our call, weren’t we!) How, like, we'll be on medication and then we'll go for an appointment…. “How many seizures have you had?” - “I don't know, because I felt like I don't remember stuff because of the seizures, or because… or/and because of the medications, or/and because of this potential psychiatric aspect.”. So, how do you work on challenging all of that?
03:20 Ewan Nurse
There's quite a famous study in the literature done about 20 years ago in Germany where they took a bunch of patients who had focal epilepsies (mostly temporal, but a mix of others as well) and they basically asked them to keep as accurate a seizure diary during monitoring as they could. And then, as it happens, at the end of any video EEG, they go through and find all the seizures. But then they also tried to match up the diaries to those seizures.
03:46 Torie Robinson
Yep.
03:46 Ewan Nurse
And they found that these patients would only record (of the total number of seizures) about one in three. So that is for every seizure that they found on the video EEG, only 1 made it into the diary. Now, of the big tonic-clonic seizures, they did tend to log 4 out of 5 of them. So, as you can imagine, the bigger events that are longer, a bit more dramatic, you can feel it in your body a bit more; patients were better able to record them in their diaries. A lot of these other events, the more minor focal events, and all the different ways they manifest in everybody; they were harder to get into diaries. I should say as well, this was inpatient data, right? So, these are patients who are in a hospital for a video EEG, and they already have a known diagnosis of an epilepsy, so they would have undergone medication withdrawal as well. They're having a rough time of it; it's done to induce seizures, right? So, they're more likely to be having bigger seizures than they usually would because they're not on their usual schedule of tablets.
Overreporting - when non-seizure events make it into diaries
04:51 Torie Robinson
Was there sometimes overreporting of seizures as well? Because I've heard about that happening sometimes.
04:55 Ewan Nurse
Yeah, so this study did not look at that, but that is something that our previous researchers definitely looked at. So, I guess the concept of overreporting is that not everything that makes it into a diary is, of course, a seizure. Maybe, yeah, you have some sort of strange experience that isn't actually a seizure. Maybe you have a different health problem. Maybe you stood up too quickly. Maybe we just don't call it a seizure on video EEG…
05:58 Torie Robinson
Oh!
05:58 Ewan Nurse
…because it was quite a small one - you know, there are certain parts of the brain that have seizures that we don't always pick up on so well. So, the frontal lobe is traditionally best known for this, right. People can have what is on video, a seizure, no dispute. But we've just got a bit more skull to record through, basically. And it's harder to pick up those seizures on the EEG.
Overreporting, I guess is important too, because some patients might be coming to you with diaries that say they're having lots of seizures... They are experiencing something. The fact that something's happening should not be minimised, they're obviously still coming to a health care professional concerned about these events, they're just not always epileptic seizures, even if the person has epilepsy.
06:09 Torie Robinson
I mean, I totally relate to that. I've had times where I thought “Okay Is this almost like an anxiety thing, which is making me feel funny? Or is it a seizure?”; and I don't know.
06:19 Ewan Nurse (05:50.723)
Mm.
06:19 Torie Robinson
So no, I totally get it, and I've spoken to other patients as well who've said the same thing. It's a bit like how sometimes you don't know if it's an epileptic seizure or non-epileptic seizure.
06:29 Ewan Nurse
Mm.
06:29 Torie Robinson
Sometimes people can't even tell the difference between those things. So, how does all of this play out in daily life when somebody goes to see their team, they bring along their seizure diary and say “Okay, here you go, leave it to them.”; what are you gonna do?
06:44 Ewan Nurse
That's the really interesting thing to me because a neurologist or whoever it is has to make a judgment based on their diary, right? Are the seizures getting worse? Are they happening at different times? Is it a different type of seizure? So, youre… yeah, what you're telling them and what you're putting in a diary or your calendar or your apps or whatever it is, you know, your care team has to really have a think about that very carefully in order to make any adjustments to your treatment. So, yeah, this is a very important problem because if you have more accurate diaries, you're hopefully improving quality of life for your patients, improving safety, proving independence, all of these things.
Why subtle seizures are the hardest to track
07:28 Torie Robinson
But what are the biggest challenges that you've discovered through your work that people face when they are tracking their seizures or attempting to track their seizures?
07:37 Ewan Nurse
So, I guess the biggest problem is just that many seizures are quite subtle, right? We might think of seizures as the big, generalised tonic-clonic type events, but for most patients, that is not what most of their events look like, right? So, if you're having small absences, or even if your seizures have motor manifestations, they might be quite subtle. So, they might not always make it into the diary. And remembering a seizure and then putting it in the diary is quite a complicated thing. We know that the brain circuits involved for seizures for most people overlap with the brain circuits where memory is encoded. So, fundamentally, the wiring of your brain is affected by the epilepsy, and you might not remember as well.
08:26 Torie Robinson
Mm-hmm.
08:28 Ewan Nurse
But then we all forget things regardless of our diagnosis or not. You know, you might make a cup of tea and forget about it, and these things happen, right?! Epilepsy or not, right!
08:37 Torie Robinson
Yeah. Yeah, yeah.
Psychology, identity & why some people don’t record their seizures
08:38 Ewan Nurse
So, I guess the epilepsy itself affects our memory, human memory is imperfect regardless, and then in a small number of cases, you may have people who are intentionally not putting things in their diary - for whatever [reason]; that could be a stigma reason, it could be a medical legal reason, but yeah, there's a minority of cases where people are intentionally not putting that information in their diaries.
09:03 Torie Robinson
I wonder how common, actually, that is (people not putting it in their diary). ‘Cause also, I think sometimes it's like confronting yourself “I do have a real, real problem with my epilepsy.”. ‘Cause I think, sometimes we're taught to [say/pretend] “Oh, it's no big deal”, you know, I'm having these seizures... I mean, it's a huge deal(!), but you try and get on with your life... No, it's really important that you write them down. I think for some people, that's probably an issue.
09:28 Ewan Nurse
A lot of colleagues in neuropsychology and neuropsychiatry talk about the idea of sort of how well you internalise the idea that you have epilepsy, compared to epilepsy is something that's happening to me.
09:39 Torie Robinson
Right, does it define you or not? know, is it something that happens? Yeah.
09:39 Ewan Nurse
And if you think that, yeah “Is it part of who I am or is it this external thing acting on me?”. Because if you're like “Oh, it's just this thing that happens.”, you might be less motivated to engage with your care team, and you might be less motivated to put it in your diary. Whereas people who do internalise it, and they think “No, no, I am a person with epilepsy. This is something my brain does, at least for now.”...
10:06 Torie Robinson
Yep.
10:06 Ewan Nurse
…they're more likely to sort of engage in the whole process and be motivated to fill out seizure diaries.
The role of witnesses in reporting & why so many seizures are missed
And I guess another element to add in here is; a lot of people don't always do their diaries by themselves, right? They might have a partner or a family member or a flatmate, or something who assist with that. So, that's something I've been really interested in lately is adding this other link in the chain, having other people as part of that seizure reporting process.
10:33 Torie Robinson
Hmm, because how they perceive it, you know, might be accurate, but it also might not be.
10:37 Ewan Nurse
Exactly, yeah. And I think neurologists in particular find this information incredibly valuable, right? Which makes sense: if someone's a witness to events, you want to take that very seriously. But humans aren't actually wired very well to remember traumatic events very well! So, particularly if someone's having generalised tonic-clonic seizures, people can have a lot of trouble reporting those if they've witnessed it. And even just things like if you sleep in a bed with someone with epilepsy, you might mistake sleep issues for minor seizures or something as well. So again, have this…
11:17 Torie Robinson
Or vice versa, you know, yep.
11:19 Ewan Nurse
Exactly, you have this exact same under and overreporting issue, but there's another human in there as well.
11:26 Torie Robinson
So, your paper that you've written all about this, could you give us an overview?
11:31 Ewan Nurse
Sure. So, we wrote a paper in Epilepsia called “The Silent Witness, the unseen gaps in eyewitness recognition of seizures”. And we took at-home video EEG (sometimes called ambulatory video EEG or home VEM) and we took a bunch of these recordings from 76 patients who together had 640 seizures. And what we found was that 58% of the focal seizures and 57% of non-convulsive generalised seizures (so these might have been absence or more minor motor generalised seizures) with a witness were not recognised by the witness. So, I'll just emphasise that again…
12:10 Torie Robinson
Wow!
12:10 Ewan Nurse
…so, the majority of seizures are more minor focals and these more minor generalised events, 57, 58% were not recorded by a witness during their monitoring at home. This is not including big convulsive seizures, right? Which are easier to report. These are the more minor ones; they're still diagnostic, they're still important, they weren't…
12:31 Torie Robinson
Yeah.
12:31 Ewan Nurse
… they weren't reported. We also looked at non-epileptic events…
12:40 Torie Robinson
Ok.
12:40 Ewan Nurse
…and these were recognised much more often. So, we found that 94% of the patients with non-epileptic seizures had at least one witness event versus 61% for our focal epilepsies and 43% for generalised.
12:56 Torie Robinson
Why were their events more likely to be recognised than epileptic events?
13:01 Ewan Nurse
I guess the theory is that an individual might have those events more in response to or because of someone is around. Whereas an epileptic seizure is a bit more organic. It may happen as a stress response or something, but they just happen a lot of the time, right?
13:20 Torie Robinson
Yeah.
13:20 Ewan Nurse
Especially these more minor ones.
13:22 Torie Robinson
Okay.
13:22 Ewan Nurse
Whereas a non-epileptic seizure is far more intertwined with our environment, the people around us, our feelings… It's more complex and it's more likely, I guess, to be brought upon.
13:33 Torie Robinson
Do you mean, like, it might be slightly more predictable? Or they might see the connection between environment…?
13:39 Ewan Nurse
Having somebody around is sort of part of what precipitates a lot of these events, let's put it that way. So, it's sort of more part of the process of the event is having a witness, I think.
13:50 Torie Robinson
It's so interesting, a bit scary too, but I guess this makes a point that we need to be able, we need to educate the people not just with the epilepsy but the people surrounding them.
14:01 Ewan Nurse
Yeah, exactly. I guess general education about the epilepsies and seizures, and the importance of seizure diaries, and the care of that person.
14:10 Torie Robinson
Thank you to Ewan for opening our eyes to the challenges of seizure diaries and sharing insights from “The silent witness” paper. Next week for part 2, join us where Ewan goes deeper into seizure reporting in developmental and epileptic encephalopathies (DEEs). We explore how technology like wearables and implants could help, and why collaboration between engineers, clinicians, and families is the only way forward.
Check out more about Ewan at the website torierobinson.com where you can access this podcast, the video, and the transcription of the entire episode all in one place.
And if you haven’t done so already - you know how it goes(!) - please do press the thumbs-up for this episode, comment below, and subscribe to our channel, so that we can get way more people around the world - clinicians, patients, and the general public - learning facts about the epilepsies! See you next week!
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