Neurologists Recognising & Addressing Symptoms Other Than Seizures - Claude Steriade, NYU Langone Health, USA
Learn of when an Autoimmune-Associated Epilepsy can onset, potential causes, and the needs of people affected - other than seizure control! All in part 2 of 2 with epileptologist Claude Steriade from NYU Langone Health Epilepsy Center.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Claude Steriade
“We just did a study where we looked at patients who had Autoimmune Encephalitis and we followed them over time, and then we did structured psychiatric interviews to find out how often they had psychiatric diagnoses at follow-up. There was…about half had a mood disorder. And a third of them had active mood disturbance. But the crazy part is that only a third of people who had depression actually had a psychiatrist and were diagnosed.”
00:26 Torie Robinson
Fellow homo sapiens! Welcome to, or welcome back to Epilepsy Sparks Insights - and part 2 of 2 with star specialist epileptologist Claude Steriade - an Autoimmune-Associated Epilepsy expert - who played a key role in the conceptual definition through The ILAE Autoimmunity and Inflammation Taskforce. Today we chat about the common symptoms of Autoimmune-Associated Epilepsy - but beyond the seizures. Such as the ultra-common, significant cognitive issues, mood disorders (which affected about 50% of people in Claude’s latest study!), and mood disturbances (affecting about 30% of people in the study!)
Please don’t forget to like, comment and subscribe to our channel so that we can get the messages about the epilepsies - and all the “lovely” stuff that goes with them - out to more people around the world.
Now, in part 2 of 2, may I introduce to you, Autoimmune Associated Epilepsy specialist, epileptgologist Claude Steriade from NYU Langone Health, US!
01:26 Claude Steriade
Thanks for having me. So, I am a neurologist. I work at New York University in the Epilepsy Center. And my area of interest is the world where immunology and epilepsy interfaces; so, my clinical and research interest is basically people whose seizures may be driven by an autoimmune problem
01:48 Torie Robinson
When does it “normally” start?
01:50 Claude Steriade
For Autoimmune-Associated Epilepsy - that's a really important question - so, it really depends on the type of antibody. So, for Autoimmune-Associated Epilepsy, which is basically the main situations that you see this in, is GAT65 antibodies that tends to affect usually younger women…
02:07 Torie Robinson
Hm!
02:08 Claude Steriade
…that starts earlier in life. You can see Autoimmune-Associated Epilepsy associated with cancers - that's usually in older people who are at risk of having an underlying malignancy. And you can also see epilepsy after an Autoimmune Encephalitis. So, there's a proportion of people who will have acute symptomatic seizures from an Autoimmune Encephalitis [and] a very small proportion of them will continue to have seizures. For LGI-1, for example - which is usually a disease of older men (although, you know, there's some variability to this) - about 20% of them will continue to have seizures at the 2-year mark, you know, which is higher than it was previously thought to be. And that probably continues to go down over time because some people just have a more protected disease course. But the point is that it sort of varies depending on the specific antibody, the clinical situation. It probably happens less in children, you know, there have been a few studies looking at paediatric epilepsy and these antineuronal antibodies, and most of the studies actually haven't found a significantly increased risk of these antineuronal antibodies in children compared to control cohorts. Probably the main autoimmune condition where we see epilepsy in children is Rasmussen's Encephalitis, which is an exceedingly rare condition. But usually, when I think of Autoimmune-Associated Epilepsy, I think teenage and above. I think focal epilepsy of unknown cause, and then there's these specific sort of syndromic associations with specific sort of like ages and sex and comorbidities.
03:38 Torie Robinson
Maybe these are just correlations, but it does impact that they're of certain genetic components to this?
03:46 Claude Steriade
Yeah. So, for example, with GAT65 tends to be young women who tend to have other systemic autoimmune problems, higher incidence of type 1 diabetes, Hashimoto's thyroiditis. So, their body's prone to autoimmunity. They can also have vitiligo and other autoimmune conditions. And so, it's probably genetically driven. And in fact, there's like a little bit of genomic evidence for this. In some of the other conditions, there's maybe less of a genetic driver and it's maybe more related, like, in onconeural antibodies, so antibodies associated with an underlying malignancy (it's driven by an underlying cancer), It's not so-much genetic. But in many cases, you don't really have anything to really explain it. There are many people who have just GAT65 associated epilepsy, no other systemic autoimmune problems, no other, you know, clear triggers for it, and it's really frustrating for patients because they don't understand why it is that this happened. And the truth is that a lot of the time we don't know.
04:44 Torie Robinson
Which I guess is another reason for (as if we need any more) for funding for research, then we can find out more answers to this...
04:44 Claude Steriade
Absolutely. I mean, that's why I do research because, you know, I have questions that are come to me every clinic that I don't have answers to, and it's so motivating to go back and, you know, design studies that hopefully will give us the answers to these questions. And I think this is such an exciting field to be in because I think we're so close to having answers that are going to really change clinical practice, you know, and I think that we're really lucky to have patients who are willing to participate and want things to be better for other patients. And I think we have tools to try to be better at diagnosing these patients, finding better biomarkers to know if we're doing a good job of treating them. And absolutely.
05:40 Torie Robinson
And also, I think, checking the impacts on quality of life overall and any other symptoms, right? Not is it just effective in say, you know, stopping or managing seizures/seizure control, but what are the other impacts? Because we've spoken before about anti-seizure medications and often they can just, like, dope you up, they can do so much and impact your quality of life. So, is that something you look at as well with these treatments?
06:04 Claude Steriade
Yeah, absolutely. I mean, like you said, in general in epilepsy, that's the case, but in particular with Autoimmune-Associated Epilepsy, patients don't just have disability from their seizures, they often have significant cognitive issues. They often have psychiatric comorbidities and that affects their quality of life significantly. And a lot of the time, they end up being on a lot of anti-seizure medications because the anti-seizure-medications don't work very well. And so, then they have to deal with all of the side effects from these anti-seizure medications. So, absolutely, you have to look at all of that. I think you have to look at all of that as, you know, diagnostic clues, because I think when you meet somebody who has really severe cognitive dysfunction going along with their seizures - especially when it's early on in their disease - that's a red flag…
06:50 Torie Robinson
Right.
06:51 Claude Steriade
But you also want to look at it as a marker of disease and I think that's something that we have to want to try to treat and make better with treatments. And it's really under-diagnosed in terms of the other comorbidities that come with an autoimmune cause of seizures. So, for example, we just did a study where we looked at patients who had Autoimmune Encephalitis and we followed them over time, and then we did structured psychiatric interviews to find out how often they had psychiatric diagnoses at follow-up. There was…about half had a mood disorder. And a third of them had active mood disturbance. But the crazy part is that only a third of people who had depression actually had a psychiatrist and were diagnosed. Because, you know, they're being followed by neurologists and we, as neurologists, and I'm probably guilty of this too, we really focus on the neurologic symptoms a lot more than the psychiatric, even though the psychiatric drive the neurologic symptoms to a lot of the time, they can make the seizures worse, they can make the experience of the cognitive symptoms a lot worse. So, absolutely, I think that we need to do a better job of involving our colleagues in psychiatry, involving our colleagues in rehab to help with all of the non-pharmacological tools that we have to make patients feel better from all of their comorbidities. And we need to do a better job of asking questions about these different types of symptoms to find the patients, find out that they have a neuroimmune cause of seizures, but also make sure that we're addressing all of the symptoms when we're seeing them in clinic and treating them.
08:30 Torie Robinson
Because identifying symptoms other than seizures also helps you make a more accurate diagnosis of the type of epilepsy.
08:35 Claude Steriade
Exactly. Yes, exactly right.
08:38 Torie Robinson
You said involving other clinicians (your colleagues), how often does that happen, do you think? And because I've spoken to so many patients and they're just like “Well, I just come into my appointment and I'll say, they'll ask me how many seizures I've had and severity, and then you kind of leave with another prescription.”. And there isn't enough time or priority given to the psychiatric comorbidities - or morbidities - as well as any movement disorders and stuff like that. How do we get more people on board, more of your colleagues on board when it comes to this?
09:12 Claude Steriade
I mean, I think there's like different ways of looking at it, right? I think you need to look at it probably on a more systemic level, ‘cause I think a lot of what drives these short visits and the fact that all the problems are not being addressed is unfortunately the way a lot of billing is sort of designed in many healthcare systems - that doesn't encourage doctors doing a good job of addressing all of those things. You know, you've got these long wait lists to see all of these patients and it's, you know, sort of discouraged, almost, to, like, address all of these things in a mindful and adequate way. So, there's that level(!), you gotta fix it at a greater level, but I'm not a politician, I'm not gonna be able to fix this. So, in my world, on my day to day, what I can do is, for example, what we're doing is we're starting a multidisciplinary clinic where it's gonna start actually in 4 weeks(!), where I'm gonna have a psychiatrist and a physiatrist or a rehab doctor all in the same place. We're gonna see patients and patients are gonna not just see me but see the psychiatrist and see the rehab person. As I think, you know, you can try to do it all as a neurologist, but the truth of the matter is I'm probably not that good at doing rehab. I'm not that good at treating psychiatric symptoms, because that's just not my training. And I think that neurologists need to stop being scared of identifying these things and at least starting first line treatment. So, there's like, that's a whole separate discussion. Like, should neurologists know how to treat depression or at least start treatment for depression? And there was even, I think a debate at AES about this at the American Epilepsy Society meeting, like pros and cons. And personally, I think that neurologists should know at least the basics, get things started and then refer, because just the reality of getting access to a psychiatrist in the US at least is challenging. But I digress. So, I think…
10:57 Torie Robinson
Hehehe.
10:57 Claude Steriade
I think you have to try to, you know, and of course not every place can have a multidisciplinary clinic, but I think that's the important thing is to at least know that patients need this and to, you know, have at least a network of other physicians that you trust, that you know you can refer the patients to, that you're gonna be communicating with about the patients to make sure that they're getting all of the other things addressed.
And, you know, I think, honestly, like you said, sometimes, you know, patients just want to be listened to. They don't want to just leave with a prescription, they want to know that all of the other symptoms they're experiencing… even if they're not going to get fixed, I think patients are so reasonable -they know that you can't fix all of their problems right away in a 15-minute visit or in a 30-minute visit. But I think asking the questions and them knowing that you care about all of these different symptoms that they're having, to me, I think is very therapeutic, is my experience of it.
11:51 Torie Robinson
Totally, and also it kind of reassures them that you are looking at more than 1 symptom. So, you're not making a decision based upon just seizure activity. You are…
11:59 Claude Steriade
Yeah.
11:59 Torie Robinson
…taking into account everything, whether you might not be a specialist in those other things too, but you take it into account. And maybe it's something that can be addressed in the future or, you know, it's not forgotten. I can say from patient perspective, it's so important and it's reassuring as well to know that you're listened to…and you won't be scared about bringing up another appointment as well - at a follow up, which is maybe when it could be dealt with or it can be, you know, you can look at it again.
12:25 Claude Steriade
As physicians, we're, like, a bit worried about talking about things that don't have an easy fix to it. I feel like maybe there's a psychological component to this, right? So, it's… with seizures, you can adjust someone's seizure meds, up their dose, try something new. Like that's a lot easier to do. And for cognitive symptoms: I don't have a pill for that! That works, you know, for psychiatric symptoms, there's pills for that, but that's not the only fix, you know, by any means! So, I think those are issues that are complex, that have no easy fix. And I think maybe sometimes physicians shy away from that because we don't have, you know, something easy to offer patients to fix the problems that they're having. But, I don't know, I haven't been doing this very, very long, but I don't think patients expect you to fix things for them.
13:15 Torie Robinson
No, they don't. And also, you know, looking at things from the clinician's perspective, sometimes the other challenges aren't necessarily complex. They won't always be hard to fix. If you can,,, as we were talking about before: if you can help a patient get better sleep, you can often reduce seizure frequency and improve quality of life and reduce depression (for instance), when I'm not saying it's a case with everyone, but that is not looked at enough, I don't think, like quality of sleep or what is their… you know, their familial situation and you know, or even sometimes (and I know that this is not the job of you guys) a referral to somebody who can help them financially. Okay, so, what if they can't work anymore, right? Like that is one of the biggest stresses for all of us.
13:56 Claude Steriade
I completely agree. I mean, in an ideal world, we would have, like, a clinic with a good social worker who can help all of our patients who, you know, have a lot of needs.
14:06 Torie Robinson
Thank you very much to Claude who has provided us with such a brilliant insight into the complexities and challenges of Autoimmune Associated Epilepsy and indeed acknowledging and addressing the additional symptoms presenting their lovely selves -such as mood disorders and significant cognitive challenges.
Check out more about Claude and her work on the website torierobinson.com (where you can also access the podcast, video, and transcription of this episode - and all the other episodes), 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, and see you next week!
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Claude Steriade an epileptologist at NYU Langone Health Epilepsy Center and assistant professor of neurology at the NYU Grossman School of Medicine, USA.
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LinkedIn: claude-steriade
NYU Langone: claude-steriade
ResearchGate: Claude-Steriade
Neurology Live: neurologylive.com/view/2024-clinical-preview-epilepsy-seizure-disorders-claude-steriade
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