Understanding Acute Symptomatic Seizures: A Deep Dive - Clio Rubinos, UNC School of Medicine, NC, USA
What are Acute Symptomatic Seizures, how do they differ from epileptic seizures, and how can one recover? Who will develop an epilepsy after one and what are the causes?! Think stroke, TBI, tumours, infection, encephalitis, status epilepticus...! Find out all about it from neurocritical care and epileptology specialist neurologist Clio Rubinos.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Clio Rubinos
“...initially they were unaware and then at the moment that they heard they get a… they get a bit upset that they happen, you know (understandably, because it's not only the brain injury they had now they have something else to worry about right, “Oh my god I had these seizures)”, but it's good to discuss it because then I explained why these medications are taken and in the ones that they need to continue “Please do not stop it because if you stop it you have another seizure…”
00:22 Torie Robinson
Fellow homo sapiens! Welcome back to, or welcome to: Epilepsy Sparks Insights. Today we are chatting about Acute Symptomatic Seizures - which aren’t epileptic seizures although… and thank goodness they usually don’t, but can lead to epilepsy. Meet Clio Rubinos who’s a neurologist specialising in neurocritial care and sees and cares for people affected by these Acute Symptomatic Seizures.
00:44 Clio Rubinos
Hi, Torie. Thank you so much for the invitation and for having me in your podcast. So yeah, my name is Clio Rubinos. I am an associate professor at the University of North Carolina. I work in the divisions of neurocritical care and division of epilepsy as I'm dual-trained in both of these. And I'm bridging both divisions with my passion in the management of Acute Symptomatic Seizures, the ICU EEG, which is electroencephalogram monitoring. It's all the stickers in your head to see your brain activities in critically ill patients. And also, my passion is about management of the status epilepticus which is a condition, a neurological emergency that your brain goes into seizures, the seizures non-stop, that you need a strong medication to give a break to your brain.
01:30 Torie Robinson
And status-epilepticus used to be considered a seizure that lasted over 15 minutes, right, but now it's 5 minutes, correct?
01:35 Clio Rubinos
Yes, we have evolved over time. Before it was actually 30 minutes. And I can imagine parents…
01:40 Torie Robinson
30! Gosh!
01:40 Clio Rubinos
Yeah, I can imagine parents seeing their kids, seeing for so long! Now for the convulsive one (is the one that had a motor activity, the one that we typically see in the movies) is 5 minutes.
01:52 Torie Robinson
Mm-hmm.
01:52 Clio Rubinos
But we have what is called an “operational definition” of a status epilepticus that is based on 2 types T1 and T2. And the importance of this operational definition is to say T1: it tells you when the mechanisms in your brain that should have stopped the seizures are not working, or, the mechanisms in your brain that are active in the seizures are over activating, which needs more medications. And T2 is a time that tells the clinicians “You must stop the seizure as soon as possible because there's going to be long lasting effects such as neuronal injury and then [the] brain will suffer and then you will have more comorbidities”. And this T1 and T2; if you want to translate into minutes, it changes in the place of the type of seizure that you have. Is it the motor one that you have all body shaking? You know, T1 will be 5 minutes and T2 will be 30 minutes. If it's a focal one, just an area of your brain, you know, with or without awareness (I mean, your meditation is not there); T1 will be 10 minutes and T2 will be 60 minutes. And then you have the other one that you have no motor activity whatsoever. So it's the electrographic [where] you only see changes in your EEG (EEG, again, is electrocephalogram), but no [physical] movement whatsoever. Then the definition for T1 is between 10 to 15 minutes, and T2 we don't have determined yet on what is T2.
03:19 Torie Robinson
Gosh, it's more complex than the general media tells us, right? But I think that's a good representation actually, or example of how complex the epilepsies are, right? No two seizures or seizure types, let alone are the same, so…
03:33 Clio Rubinos
Absolutely. Yeah, they don't cause the same long lasting effects, but I think what is important for this operational definition is just to tell the person who's treating the patient (, right, the physician), that this is an emergency and that we had to treat it because time is great.
03:48 Torie Robinson
No, totally. And I've actually had a friend go into status epilepticus in front of me before (focal and then tonic for about an hour). It was horrific? And unfortunately she didn't have specialists around her and it was just a bit of a palava. Luckily she's fine, but I'm very aware of how dangerous, like so dangerous that is. We are sometimes talking about death, right? So it has to be taken seriously.
04:11 Clio Rubinos
Yes, and I'm so sorry you have to witness that because it's very distressing, you know; for the caregivers or the families or the friends. You know, that's one of the things that I highlight in my clinic and I have a post-ICU clinic that is called the Post-Acute Symptomatic Seizure clinic. I will…
04:28 Torie
PASS?!
04:30 Clio Rubinos
Yeah, the PASS clinic, yes! And I'll tell you more about what Acute Symptomatic Seizure is following my statement of the education that I do for the family members and for my patients. Because it's very important for them to be, you know, ownership of their care and to have expectation of what can occur and then they can be prepared for that.
04:51 Torie Robinson
And also minimise panic, I think, as well, ‘cause the less you know, the more scary it is. And like, it was a bit scary for me, but also I think I felt a lot less scared or worried than most people would because I understand it to a degree. So, I'm kind of lucky in that way, but I can imagine… especially if it's like a child that you love, my god…
05:09 Clio Rubinos
Yes.
05:09 Torie Robinson
…and a child of any age, right? That can just be horrific.
05:13 Clio Rubinos
Yeah, absolutely. So having, you know, knowing what to do, knowing what to expect is a valuable tool for the patients to have. And in the patients that have breakthrough seizures or cluster quite commonly; we can give rescue medications. There's inhalers for asthma attacks, we also have nasal sprays for also as a rescue medication for seizures. So, I also recommend that to my patients and give it to my patients (the ones that have a risk for breakthrough seizure or have had breakthrough seizure before) so that the family be in doing the ABC or seizure first aid can also activate some sort of rescue medication to stop that seizure from continuing to happen.
05:50 Torie Robinson
So, tell us more about your PASS clinic, so “Post Acute Symptomatic Seizure”. And then I know you've got another one I'm going to talk about quickly, which is the “Post Acute Symptomatic Seizure Investigation and Outcome Network”: PASSION.
06:02 Clio Rubinos
Yes, now thank you for your interest! Yeah. So Acute Symptomatic Seizures are those seizures that are symptom of disease, right? Seizures are not equal to epilepsy.
06:13 Torie Robinson
Right.
06:14 Clio Rubinos
Seizures, right? Not everybody that has seizures will have epilepsy, but everybody that has epilepsy will have seizures, right?
06:20 Clio Rubinos
So, Acute Symptomatic Seizures are a symptom of a disease and the disease can be structural in your brain or not structural as well. But definitely it's an event that has happened that decreased your threshold for your brain to have a seizure.
06:35 Torie Robinson
‘Cause anyone could have a seizure. We've all got a threshold right?
06:37 Clio Rubinos
Exactly.
06:38 Torie Robinson
That’s the way I look at it: everyone's got threshold but people with an epilepsy; their threshold is lower.
06:43 Clio Rubinos
Exactly. The threshold is lower, but also the brain has learned how to seize!
06:47 Torie Robinson
Yeah! Good on it, right?
06:50 Clio Rubinos
We learn English, we learn Spanish, we learn French, you know. We talk about neuroplasticity in our brain after ischemic stroke. The same happened for epilepsy, you know. You either are born with a condition that your brain has [been] born with a condition to have seizures or you learn later on in life. And this, with Acute Symptomatic Seizures goes into it. And then we talk about structural disease ([which] is called ischemic stroke, hemorrhagic stroke, trauma, tumours); we talk about non-structural disease or aetiologies, with talk about infection, right; meningitis, encephalitis, it can be alcohol withdrawl…
07:27 Torie Robinson
I met someone who told me about that once, actually; I was in hospital and the guy asked about me and I just mentioned it and he said “Gosh, I had a tonic-clonic once!” - because he had come off the alcohol without support and he just went into a seizure.
07:41 Clio Rubinos
Yeah, and it's just that the one seizure that happened and he didn’t have epilepsy, or like low sodium, right, and other toxins as well. But the importance of this Acute Symptomatic Seizure is that, again, not everybody will have epilepsy. However, a subset of patients will have epilepsy. And different studies give you different rates, about 20 to 35%, right? And what happens is, of course, the majority of these patients that have had a seizure, they're placed on anti-seizure medication, and then they're discharged on them to prevent the recurrence of seizure. I want to make sure that everybody knows that anti-seizure medication are not anti-epileptogenic.
08:22 Torie Robinson
Right, and that's a good reason that we changed the name, think, as well, isn't it? Because, like, for instance, what is it? Lamotringine is used often for bipolar, that these just happen to, hopefully, fingers crossed, in how [many]… [in] 70% of us, stop the seizures. So then, but it's not anti-epileptic, because you can't stop the epileptogenesis, right, from having occurred!
08:42 Clio Rubinos
Exactly, right, and epileptogenesis is the capacity when your brain has learned how to seizure, right? So, it doesn’t stop for your brain to learn it but it stops your brain to have the seizures.
08:54 Torie Robinson
Right.
08:54 Clio Rubinos
Yeah, and so in, you know, with an increase of continuous EEG (which is, again, the neuro monitoring that we do for the brain activity), we have detected a lot of seizures that are just electrographic, not clinical movements, but also patterns that are possible or most likely to be seizures or what we call...
09:13 Torie Robinson
Mm-hmm. Yeah.
09:13 Clio Rubinos
…“ictal”, right? There's the ictal, inter-ictal continuum. And with this, we have started putting the patients on seizure medication to prevent the seizures to reoccur and then they get sent home on these medications. But then the thing is, in the follow up; some of these patients get missed, and they don't get seen by an epileptologist that is trained to manage these seizures and to assess what is the likelihood or their risk for seizure recurrence in these patients. And I guess, I mean not 100% of the patients are going to have epilepsy (probably 20 to 35), so, the PASS clinic is a specialised post-ICU clinic in which I follow these patients and I do a personalised assessment of the likelihood for these patients to have seizure recurrence, and then advise them to continue/discontinue, and then should we win it, and then if you have to continue, if this drug is good for you - because there are side effects to a drug too. And then we just go to other drug if it's needed.
10:08 Torie Robinson
And how do you feel that people take this news when they're told “Okay, by the way, not only has your life been “excellent” because you've had a stroke, but also, by the way, you've developed epilepsy too, and you're going to have to be on these drugs pretty much kind of forever, probably?
10:23 Clio Rubinos
Yeah, you know, It's interesting, we're trying to improve our education in this realm. A lot of these patients or a lot of their family, they don't know that this patient had seizures. Because, sometimes it was only in EEG, right, like “What do you mean? But he never or she never shake!”, right? So I have to explain, it was like an EEG-based. So we're definitely improving in that situation - at least in my centre, because I had this past clinic and I'm a big advocate of patient education and then why use of seizure medication [so] they know about it, but initially they were unaware. And then at the moment that they heard [(about their epilepsy)] they get a… they get a bit upset that they have it, you know (understandably, because it's not only the brain injury they had now they have something else to worry about, right.
11:07 Torie Robinson
Yeah.
11:07 Clio Rubinos
“My god I had these seizures!”. But it's good to discuss it because then I explain why these medications are taken and in the ones that they need to continue “Please do not stop it because if you stop it you have another seizure, then you can have aspiration pneumonia, you can have a fracture, and these things can pull you in a disadvantage as you're recovering from your primary brain injury.” At the end of the discussion, the family and the patients are very grateful for this intervention and especially when we discuss about seizure first aid. Because we always do that. I always have an hour for my new patients because a lot of talking, a lot of teaching, and being a critical care physician, I can also answer some questions that has happened in the ICU. So, it gives a more comprehensive value to this. But for your questions, yeah, they are a bit upset that they have had the seizure during the brain injury that they have for admission to their hospitals.
12:01 Torie Robinson
So you mentioned that about 30ish percent of people do develop epilepsy post stroke, but we've also spoken about how not all clinicians know when to take a person off of the medications, i.e. find out do they have epilepsy or do they have the symptomatic seizures? So tell us how you contribute to getting people off the drugs if possible.
12:24 Clio Rubinos
This is a personalised approach that we have to do and it's based on: brain age, the aetiology of the brain injury, the aetiology of what has happened to the patients, right? Again, when we talk about Acute Symptomatic Seizure, we say it's a cause of the disease and then the idea is that when you reverse the disease, right, there should be no problem. But then some of these brain injuries as a stroke or trauma, they leave scar tissue, right? That it might be epileptogenic by itself. So we have some, some scores, for example, we have the CAVE score that is a predictive score for epitogenesis in patients that have intracerebral hemorrhage. We had a SELECT score that is a score for ischemic stroke. And we had the DS score that was just validated a month ago that is for cerebral sinus venous thrombosis. So, I use those scores in those 3 different types of pathology and we have a way of objectively see the risk of them. And then what I also use, the group use, the PASSION group use, we use the EEG as well. yeah, seizures are a neurophysiological disease, right? It's a brain activity disease, like, they have a threshold. So, we use the EEG data from the inpatient hospitalisation and the EEG data for the outpatient hospitalisation, one which have waited for the brain to chronify. So we can see.
13:47 Torie Robinson
Like, kind of calm down a bit and...
13:49 Clio Rubinos
Yes, and we can see the chronify of the EEG signature for that patient. And there are biomarkers on the EEG that have been identified to be associated with seizure recurrence. So, putting all that together, we make an assessment and then we make recommendations to where, like, we can give a trial of seizure medication or I should advise you not do a trial. I think your likelihood is very high.
So in terms of, like, seizure for Acute Symptomatic Seizures, it's very rare for the patients that had Acute Symptomatic Seizure…to become refractory…
14:20 Torie Robinson
Okay, interesting.
14:22 Clio Rubinos
…which is different to the patients that have epilepsy, right? Refractory means in the long-term, right? Because in the acute term, yes, there's some Acute Symptomatic Seizures in the acute, within the ICU, in the hospital, intubated; that they can be more hard to control - in the acute term. But the long term is rare for them to have a refractory disease for the epilepsy by itself. Now, not forgetting about underlying brain injury, yes, depends on where the brain injury is, you might be able to recover somehow [or] you might be able to not recover as much. And that all depends on your brain reserve and the extension of your brain injury. And that might be a bit disabling for the patients. But, just to make a connotation that the Acute Symptomatic Seizure by itself in the long term is not going to add negatively, generally, right (we have the outliers). Generally won't add that negatively to that patient. But it's important for them to know that if they have a high risk of seizure, should continue taking the medication so they prevent to add it negatively, right? I would say it's variation of pneumonia, fractures, head injury, you know, subdural haematomas.
So, I want [people] to know, once you develop epilepsy after brain injury, that you know, we can definitely offer support in order how to try to be and gain your quality of life as much as closer as it was before. I know that it's a struggle; not only you have a brain injury, but you have another second thing to be aware of and take care of. So we want to make sure that there's a support for them in place, anything that they need. And there has been experiences, especially the patients that have had a New-Onset Refractory Status Epilepticus which is “NORSE” , they start as an Acute Symptomatic Seizures, right, due to possible autoimmune disease or pyranoplasty, and sometimes we don't find an aetiology. And these patients have…are… not the only ones, but the majority of these patients are the ones that have a very big change in their life, not only for themselves, but also for the caregivers, hence, because of this, there is a big consortium, that is a NORSE consortium, that is making sure that we address all these needs in the outpatient and the long-term outcomes for the patient and the caregiver as well. Aside from them, we also have patients in their 60s or 50s that could have had a traumatic brain injury, subdural hematoma, or contortions, or could have had a stroke, and they also are debilitating for the underlying disease and also having seizures on top of that might not make them be capable to go back to their normal life. So, we're here as well for them in order to make sure that all the medication that we give minimise side effects and provide them health for their recovery and reintroduction to society. We have to give a good social support, you know therapy support. So, not only for the patient but also for the caregivers - because it can be very burdensome for the caregivers. So, in the clinic, so there is a consideration of the health of caregivers too and this brings me to something that we do take care of because there's an area of Acute Symptomatic Seizures that are secondary to an autoimmune disease.
17:35 Torie Robinson
Right, we've actually had an episode on this. It's so interesting, right?
17:39 Clio Rubinos
Yes, the new onset of the NORSE, or the NORSE and the FIRES: and then the NORSE is New-Onset of Refractory Status Epilepticus, like refractory, right, to higher medications, this patient, we sedate him heavily, and then sometimes we don't find the aetiology, and it's called cryptogenic, right? Or a non-cowsess NORSE. And sometimes we find the etiology, and it's autoimmune or pyranoplastic NORSE, right, and then these are mostly young people, right? They have an Acute Symptomatic Seizure. They're young people, but with all the sedation and then the inflammatory response, they can have cognitive functional disadvantage and then it's a huge life change not only for the patient but also for the caregivers. And so then we have to really assess the long-term outcome for these patients and the caregivers and how to support them in clinic with a comprehensive approach, you know, that includes physical therapy, social workers, psychologies, like neuropsychology assessment as well, how to improve and help them with cognitive therapies. So, yeah, it gets complicated when we talk into disease. So, I should really not be so hopeful because there are patients that definitely, you know, get a little more of a complicated outcome.
18:50 Torie Robinson
Thanks so much to Clio, for explaining to us Acute Symptomatic seizures, the huge number of things that can cause one of these seizure, New-Onset Refractory Status Epilepticus, and the important things that, you know, contribute to people’s recovery, like social, familial support and care, and psychological care
Check out more about Clio and her work on the website torierobinson.com (where you can also access this podcast, the video version, and transcription of this episode). And if you haven’t already, don’t forget to like, comment, and subscribe to the channel, share this episode with your friends/colleagues/family members, whoever it might be (!) and, see you next week!
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Clio is is a neurologist with dual training in Epilepsy and Neurocritical care. Her research interest is ICU-EEG, status epilepticus, and epileptogenic after brain injury (biomarkers, management, and patient-related outcomes), bridging both specialties. However, she has a passion for global health, and I am working in global health neurology (ICU-EEG and Neurocritical care).
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LinkedIn: clio-rubinos
X: rubinorth
UNC PASS Clinic: unc-health-follow-up-for-neuro-icu-patients
Rubinos Lab: rubinos-lab
UNC: clio-rubinos-md
ResearchGate: Clio-Rubinos