Google Cloud Speech-to-Text API (Chirp) + Gemini 2.5 Flash Non-Thinking. Treat it as a searchable index of what was broadcast, not a quotation record.
00:17:37for the invitation, can Doctor Hartono tell us a bit
00:17:41about yourself? Yes, ehm, my name is
00:17:44Hartono, I originally came from Indonesia, but in
00:17:481930 I came to the Netherlands and I worked in the Netherlands
00:17:51for over 25 years, and then
00:17:55I ehm decided to stop last year, but a week after
00:17:59stopping I was asked if I could
00:18:02help here and from that moment, this is my fourth time that
00:18:06I am here. Last year twice for four weeks
00:18:09ehm last spring three months and now
00:18:13I am here until mid- January, until mid-January
00:18:16yes yes yes okay ehm let's talk
00:18:20about SUDEP, what is SUDEP
00:18:22now? Eh Jasmin, you said it yourself eh that SUDEP
00:18:26is an abbreviation, right? That is a a eh
00:18:30Sudden Unexpected
00:18:32Death by Epilepsy in epilepsy, in Dutch it
00:18:36is actually sudden. unexpected ehm eh
00:18:39death in people with epilepsy, but there is one
00:18:43important point, which is that you have excluded all other
00:18:47causes, and what are all other causes? Those are for example
00:18:50heart attack or eh, just to name a brain hemorrhage, those kinds
00:18:54of things, you have to exclude those first, yes, so it is really a
00:18:57direct answer, really, yes exactly, it is really in people with
00:19:01epilepsy, yes, and how often does this occur?
00:19:04Ehm eh that is in adults ehm
00:19:08one in 100 patient
00:19:11years, now pay close attention to those words patient years, what
00:19:14does that mean? That means that if you follow
00:19:18100 patients with epilepsy for one year, then you have
00:19:22one SUDEP. In children, that is
00:19:25slightly less, because that is one in
00:19:294500 patient years, so if you express
00:19:32it in percentage eh eh then it is
00:19:340.02%. But yes, it may be
00:19:38small, but the consequences are of course disastrous,
00:19:41yes, and how does
00:19:44SUDEP occur? Ehm, what is it actually? Yes, that
00:19:48is eh unfortunately the precise cause
00:19:51is not clear what it is,
00:19:54but the mechanism itself is also
00:19:57ehm eh eh different eh
00:20:00let's just stick to eh this mechanism is
00:20:04multifactorial, there are at least four
00:20:07factors that play an important role and number
00:20:11one is respiratory depression, so that
00:20:14means that your breathing is so eh
00:20:17eh eh suppressed ehm eh inhibited
00:20:21so to speak and that has to do with eh
00:20:24eh suppression of your respiratory centers
00:20:28in your brain and the second is eh
00:20:31arrhythmias, cardiac arrhythmias
00:20:35ehm that also has to do with suppression of the
00:20:39eh eh brainstem, right? And
00:20:42thirdly, during that SUDEP, the entire
00:20:46system, the entire brain, as it were, gets a lockdown.
00:20:50And the fourth, yes, that is also
00:20:53a risk factor if you lie on your stomach
00:20:57yes, so there are four mechanisms, I say, right? It is
00:21:00not the cause, because we do not know the cause of SUDEP, those are the four
00:21:04mechanisms, but number one is the most important, it indeed has to do with breathing,
00:21:08yes, yes, and who runs more risk for
00:21:11yes, in principle
00:21:13eh eh eh almost all
00:21:17epilepsy patients with what we call
00:21:21eh generalized tonic clonic epileptic
00:21:24seizures, so that is people with
00:21:26eh eh eh eh how do you say
00:21:30that eh tonic then e really
00:21:34get the big ones, those are the most vulnerable, but of course there are
00:21:37a number of things that also contribute to that, among others
00:21:41one eh that tonic clonic, that is number one, the second, if
00:21:45that tonic clonic often occurs especially during the
00:21:49nocturnal and thirdly
00:21:52in people who do not take their medication properly,
00:21:55it is very important to ehm mention that, and the
00:21:59fourth, some people with generalized eh
00:22:03eh eh eh clonic tonic grand
00:22:06mal epilepsy seizures, which we call refractory, what is refractory? You
00:22:10have tried everything but those people keep having seizures,
00:22:14in short, the risk factors are
00:22:17ehm eh chronic tonic eh seizures, nocturnal
00:22:21seizures if you do not take your medication properly
00:22:24ehm eh eh if
00:22:28you have a refractory refractory eh so
00:22:31untreatable and why is ehm
00:22:34seizure control important? Well, as
00:22:37I said, ehm the more seizures you
00:22:41have, the greater the chance of
00:22:44eh eh eh eh increase in the frequency of
00:22:48seizures, that is also one of the factors that you really
00:22:52need to discuss with your neurologist, because then the
00:22:55neurologist might consider an extra medication or
00:22:59more medication or other medications
00:23:02eh for the patient themselves, what is most important is
00:23:06please faithfully take your medication, because if you
00:23:09take your medication, which increases your seizures, then you
00:23:13simply increase your risk of SUDEP, yes, so
00:23:17medication is important yes yes yes
00:23:21yes, so and how can they reduce the risk? Really
00:23:25steps from all, well, I just mentioned a number of factors
00:23:28right, what is eh important in eh eh
00:23:32the chance of SUDEP increasing
00:23:35but there are of course other risk factors
00:23:38that play a role, well, I mentioned nocturnal rest
00:23:42right, so eh lack of sleep lack of sleep but also
00:23:46stress oh yes certainly that is really a big risk but that is
00:23:50not only for SUDEP of course but for
00:23:53epilepsy in general yes right, as you know that but well
00:23:57it is a trigger is a trigger right, so that means and and those kinds of things
00:24:01play a role and but well all other general things are drugs
00:24:04alcohol etcetera, note I did not say that that is the cause
00:24:08but at the moment that you do that while your epilepsy is at
00:24:11its best, so that means the seizures are so
00:24:15very frequent and you do not take the medication
00:24:19then and
00:24:22you don't take it and then you also have nocturnal seizures and you still drink and you still drink
00:24:26then you're asking for trouble and it can only happen
00:24:29once, so normally you have to take it every day
00:24:33on the same day hm hm so it can also be that
00:24:37you don't do it one day and go drinking that can happen
00:24:40yes because that is sudden right, so that means unexpected
00:24:44the idea is sudden unexpected death so is there
00:24:48more in teenagers a bigger? No, no, it has not
00:24:51been shown that there is a higher risk
00:24:54in teenagers, but I can well imagine that
00:24:58yes, if you are a teenager you naturally want to try
00:25:01all kinds of things, all kinds of things
00:25:05in short, I don't think it's fair to only
00:25:09eh eh age, puberty, teenager, that
00:25:12that eh eh is called a risk factor, I
00:25:16would not dare to call that that, but
00:25:19eh... eh the attitude, the behavior and how you
00:25:23deal with yourself and your illness, it does play a role, do
00:25:27you think Doctor Hartono that it is important that everyone knows
00:25:30about SUDEP, absolutely, especially
00:25:34eh eh eh the risk and
00:25:38again the importance of what we call compliance, compliance that means
00:25:42the medicine, look, let's be honest, we are humans and
00:25:45humans do forget things, so if you for example
00:25:49forget once. Then the question comes: yes, but then I'm in
00:25:53danger with SUDEP, yes, that's how it is, only I think
00:25:56that you are not talking about once, yes
00:26:00what you are talking about is precisely people
00:26:03who do not take it several times
00:26:07or their own medication for example up and down, up and down the
00:26:10dosage because there are those patients who are also there so actually at
00:26:14the beginning of your diagnosis it is
00:26:17absolutely correct because then absolutely you still have because
00:26:20it takes years for my son to get everything, absolutely yes
00:26:24absolutely because look a
00:26:26patient who comes in at for example the emergency room or at
00:26:30the outpatient clinic with one
00:26:34generalized clonic tonic seizure, is he at
00:26:37risk of getting SUDEP? Yes, but yes, he
00:26:40is of course at less risk than
00:26:43someone who for example has 10 seizures a week, yes,
00:26:47I'm just giving an extreme example right, someone
00:26:51who has 10 seizures, if he then still takes his medication
00:26:54properly and another person has eight seizures, but he
00:26:58does not take his medication properly, then you know who will.
00:27:11if you do that then you will certainly get that yes that's not how it works I have read
00:27:15about eh nocturnal alarm systems hm hm
00:27:18do they work what do you think of yes and no
00:27:21eh yes in the sense that at the moment that you have such an alarm system
00:27:25then you hope
00:27:28you think that you can immediately help
00:27:32such a seizure in the night, yes you can come
00:27:36help, but pay close attention, that does not prevent
00:27:39the seizure, that does not treat the seizure,
00:27:43but if it is for example on your back or something then you can, yes, that's what
00:27:47helps, yes, that's how it is, yes okay, so that means as I said
00:27:51in the beginning too, eh, those are the four mechanisms, one of them is on the stomach
00:27:54right, and if you if you notice that you I don't know, stop breathing or
00:27:58something, then you can just and then
00:28:01directly. Yes, ehm and how can
00:28:04we talk about SUDEP without fear, because that is actually
00:28:08not the idea to bring fear into it, because I know that people
00:28:11don't know about it, yes yes, so I
00:28:15think eh, you have to of course present
00:28:18it calmly, yes and that calmly, that is of course
00:28:22also location, geographically,
00:28:24culturally, socially, socially also determined
00:28:28right, yes, look eh eh eh, I can very...
00:28:33directly talk about this in the Netherlands
00:28:36for example, but here you have to do something
00:28:40else, yes, so calmly, calmly,
00:28:43but the other thing is also clear
00:28:46honest, because there is no point in simply
00:28:50covering things up or sweeping them under the
00:28:53table, so two words, calm,
00:28:57honest, calm, but also honest, and as a neurologist
00:29:00do you tell your patients?
00:29:03Yes, directly ehm or maybe after or it
00:29:07is of course dependent on what kind of patient you have, right, as I said
00:29:10there are different types of epileptic seizures, but with
00:29:14eh generalized clonic tonic seizures then yes
00:29:18it is a discussion whether you then from the beginning
00:29:21suppose a patient comes with one seizure yes
00:29:24yes would you want to discuss that or would you want
00:29:28to say well we'll just wait and see yes I think
00:29:32it is very individually determined and said individually
00:29:35individually eh of the patient but also individually of the
00:29:38neurologist themselves yes okay that means there is
00:29:42no right or wrong choice in my
00:29:45opinion honestly if you force me now
00:29:49to answer what would I do
00:29:52for example a single seizure then I would like
00:29:56to say very probably I would not mention that yet yes
00:29:59thank you Doctor Hartono for the tech