They Aren’t FAKE! Dissociative Seizures/Non-Epileptic Events - Parthvi Ravat, Flinders Medical Centre, SA, Australia
Neurologist Dr Parthvi Ravat shares the relationship between epilepsy and Non-Epileptic Events* (also known as dissociative seizures, functional seizures, and PNES), symptoms of the latter, treatment options, and the importance of research and awareness in improving patient outcomes. Parthvi highlights the complexities of diagnosing and managing FND and Dissociative Seizures/PNES/Non-Epileptic Events, the need for a multidisciplinary approach, and the shared experiences of patients experiencing both an epilepsy and NEEs! Transcription and links are below! 👇🏻
*A type of Functional Neurological Disorder (FND)
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Parthvi Ravat
“So, there are lot of comorbidities also, associated with FND or functional seizures. The first step is to address those comorbidities like anxiety, depression, PTSD, chronic pain syndromes things like that but to address comorbidities. Yes, they are not the direct treatments for any but addressing them is important for all people with functional seizures.”
00:25 Torie Robinson
Did you know that heaps of people with an epilepsy don’t ONLY have that but also have Functional Neurological Disorder (FND) or Non-Epileptic Events? Already, I’m like “one is enough, thanks” but these diagnoses do often, unfortunately, often come hand in hand.
So now we ask - what actually IS FND/Non-Epileptic Events? Lots of us have no idea we experience one or the other or that our patients may have them - because we don’t know what they are and what are the symptoms! Good news for today: this week we have the fabulous epilepsy specialist neurologist Dr. Parthvi Ravat joining us to help us all learn a little bit about the disorder!
If you haven’t done so already, please do like and comment on this episode and subscribe to our channel so that we can get way more people around the world learning facts about the epilepsies.
01:13 Parthvi Ravat
I'm Parthvi Ravat. I'm a neurologist trained in India and I'm currently undergoing my supervised 12 months of practice to become a neurologist in Australia. My special interest is epilepsy and I try to do a little bit of research along with seeing my epilepsy patients which is my passion. Epilepsy is very close to my heart and I'm very glad to talk to you today.
01:38 Torie Robinson
Very closely related to epilepsy, although different, is FND or Functional Neurological Disorder. So, could you tell us all about this condition and how it relates to epilepsy, please?
01:50 Parthvi Ravat
So, functional neurological disorders are essentially the grey zone, which we're learning more and more about it. It's something which we don't structurally see on the conventional diagnostic techniques like MRI or CT scans or EEG but it doesn't mean it's not there! It is essentially a disorder of your mind or even the brain because there are some functional changes seen on your PET scans in functional neurological diseases also. It's basically a way that your software is not reacting correctly to whatever triggers that are coming to you. I always use this analogy for my patients: hardware and software. For example, we know epilepsy is a hardware problem because there might be structural troubles or metabolic troubles, genetic troubles which lead to epilepsy or another millions of things that may lead to epilepsy but that's essentially a hardware problem. Similarly, functional neurological disorders and specifically functional seizures is a software problem. So, it might not be very visible but it's definitely there and there's ways to tackle them. And why is it so related to epilepsy? Because it's a very common comorbidity in people with epilepsy. And why talk about functional neurological disorders in relation to epilepsy? Because it's a very common comorbidity that we see in persons living with epilepsy. It's a very common experience. Almost 30 to 50% of people living with epilepsy have experienced functional seizures, which is not a small thing and it has immense impacts on the quality of life and on various aspects of your life. So, it's important to have a discussion about it, to know about it and to be literate about what it exactly is and the most importantly that it is stack level.
03:46 Torie Robinson
And what are the symptoms of functional neurological disorder?
03:48 Parthvi Ravat
As you know DSM5 that's the Diagnostician and statisticians manual that they have laid out of specific criteria for it. It's a established disorder (functional neurological disorder) which encompasses various things including motor symptoms or the lack of thereof; such as loss of power or the ability to move your limbs, or the ability to talk, or sensory positive symptoms like having some parasitias in your body, tingling and numbness, or just a trickle somewhere in the hand or legs. So, those are motor functional symptoms, sensory symptoms, and then we have functional seizures where which come under the umbrella might look like a seizure, but might have some nuances which differentiate them from true epilepsy or true epileptic seizures. And essentially, functional seizures is a term that has now been debated and now they've recently come up with this term called NEE or non-epileptic events because we know they are not seizures, but they are also, they're just non-epileptic events. If you call it seizures, it still gives you a flavour of epilepsy - which it's not. So, that's one more symptom, besides motor sensory and seizures. Sometimes it can also encompass cognitive symptoms.
05:13 Torie Robinson
Okay, so, it's something that can be felt physically, psychologically, combination of both alongside the neurological epileptic seizures. I know somebody who developed NEE or non-epileptic events, and he has an epilepsy. And in the beginning, he didn't know the difference. We spoke about the potential and he spoke to his clinician about it, and they were like “Actually, that's not an epileptic seizure you're experiencing at this point. It's an NEE.” and he was like “Oh, gosh…” And he felt a bit like “Is this, like, kind of…fake?” (or something like it) because he wasn't familiar with it. And I think that that's something experienced by quite a lot of people with NEE?
05:58 Parthvi Ravat
Yes, absolutely. I get a lot of patients in my clinic who say that my friends and relatives, my own family who live with me keep on telling me that “You're faking it, oh not again, she's going to do that again.”, but that's not true! It's just your body's response to something that might be triggering the non-epileptic event. And it's not in your control. Of course, non-epileptic events might develop, like the whole pathophysiology might be fed by a pre… sometimes people who have epilepsy might have seen someone having a seizure and then their subconscious knows that this might be the way to manifest it. There is a good, published paper for it where they discuss how the whole non-epileptic event psychology develops and how they are fed if they've seen a relative with epilepsy or if they have had epilepsy in the past or are still having it. So, it's not that all people with epilepsy will develop NEEs but people with NEEs might have been in some touch with someone who's had epilepsy or might have seen someone or personally experienced epilepsy and that might have fed their schema of developing non-epileptic events and then whatever happens to them happens to them but it's not them doing it it's their body's response. It’s not voluntary, it's not in their control, and what is in their control though is how to tackle it and how to treat it and maybe to talk about it to a neurologist, a psychologist, a psychiatrist. So, it's a multidisciplinary thing of course, no one person can help you treat it but yeah, a team, a good team definitely helps you get on top of it.
07:39 Torie Robinson
And a multidisciplinary team, which is something similar to, often, to epilepsy, as well, because of the psychiatric morbidities. So, how does one often treat this condition effectively?
07:54 Parthvi Ravat
So, there are lot of comorbidities also, associated with FND or functional seizures. The first step is to address those comorbidities like anxiety, depression, PTSD, chronic pain syndromes (things like that) but to address comorbidities. Yes, they are not the direct treatments for any but addressing them is important for all people with functional seizures or any that's the first thing.
08:15 Torie Robinson
Is that because those other comorbidities play an important part?
08:29 Parthvi Ravat
Yes, to some extent. We don't exactly understand how it's related but there have been studies which have shown that people who might have had PTSD have a little higher tendency to develop NEEs as compared to the general population. So, that's an association. We don't know the exact relationship. But that's one part of it. The other thing is cognitive behavioural therapy, to address the psych behind it, the software that now needs to reset. And it's a brilliant thing because once you start talking, you know what's happening and where is all this generating from, and you can address it. But it has to happen under professional guidance.
09:11 Torie Robinson
So, what about preventative measures? Is there a way to do that for NEEs?
09:16 Parthvi Ravat
I'm not sure about how to prevent any NEEs but that's food for thought for a lot of people working in FND area and policy makers because there is a lot of overlay of unaddressed psychiatry issues. So, yes, more talking, more destigmatisation of mental health troubles, earlier talking can help, maybe prevent the psych from developing into something NEE. But I think the discussion is steering more towards that the psychiatry is involved more towards functional seizures but I do want to say that a lot of psychiatry is involved but it's a disorder with an organic basis that there is some functional abnormality which is why you're having these manifestations which another person with the same triggers or same stressors might not have. So, it's not like it's completely in your head but we have a long way to find out things about it, a lot of good studies going on, but there's this paper called CODES, and they talk about how cognitive behavioural therapy has helped in tackling functional seizures and it did make a significant improvement at the end of the period of their study. When you ask the treatment question besides addressing the comorbidities cognitive behavioural therapy and also, regular follow up having your team like team of doctors involved in your care just not saying “Okay bye, we met three times a year and now bye.”. So, no, just making that a thing even after you're well and not had functional events for quite a while, at least once in a while just say “Hi.” and just check if everything is fine.
11:03 Torie Robinson
I imagine something like this, again, like with an epilepsy, there could be a resurgence of the seizures they experience at some point in their life?
11:13 Parthvi Ravat
Yes, so, similarly, if one knows the triggers then they will be able to avoid them, but sometimes you can't avoid them. So, they did a study and found out that all people with NEE will have either one of the three outcomes when you tell them that they have NEE:
One-third will be fine “Okay, I'm so glad I don't have epilepsy because I don't want to want to have epilepsy.” and so they might just stop having those events altogether. That's the first third.
The second one third is are the people who will accept it and will be willing to take cognitive behavioural therapy or address the comorbidities, or be in regular follow-up and talk to their friends and family about what it is, get them involved in their care, and then, you know, basically deal with whatever has come their way.
And the third, the third is the one whom we don't know. They just continue having these functional events, and we still have to find out better therapies for them but they don't respond to any of the therapies that we currently have for functional seizures. And it's like, you know, I always tell these to my patients that I know these… about these seizures because it's like when you're trying to type duck and your phone just autocorrects and you just can't type duck. So, it's difficult for them, but my heart goes out to them. And I usually take them because I know for seizure clinic, a lot of seizure mimics, these are one of the “good” seizure mimics (they fall into the category of seizure mimics) and it's important to classify them as not having epilepsy because a lot of people have that fear and once you tell them “Okay it's not epilepsy.” such a sigh of relief.
12:59 Torie Robinson
But it's like, for instance, I know somebody who has any NEEs and he is debilitated by it. And he also, doesn't have an epilepsy, but it appears his treatment hasn't been successful. So, I do see how it can be equally, actually, debilitating to have these NEEs as it is for epilepsy. So, although I kind of, I guess, I kind of get why people say “Oh thank goodness, it's not epilepsy!”, but it's not necessarily an easy thing to address on its own.
13:27 Parthvi Ravat
The thing is, we do have, like in epilepsy we have the one-third who's only… you might have to go for surgery for those one-third. In the category of functional seizures, these one-third are the ones for whom we still aren't able to offer anything. So, maybe with science, maybe 10 years down the line we'll talk again and that maybe I'll tell you, okay, we have something for them.
13:49 Torie Robinson
Thank you to Parthvi for sharing such empathy, passion, and insight into the challenges of people affected by FND/Non-Epileptic Events! Check out more about Parthvi at the website torierobinson.com where you can access this podcast, the video, and the transcription of this entire episode all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode, and subscribe to our channel so that we can get way more people, around the world, learning facts about the epilepsies (and what often comes with the epilepsies too!).
See you next week!
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Dr. Parthvi Ravat is a neurologist based in Adelaide, Australia, with a deep interest in Epilepsy and Neuroimmunological disorders. “The best part of my clinic is listening to patient experiences of overcoming epilepsy, against all odds, with either medicine or surgery.”
Parthvi is interested in the use of technology in improving patient care, autoimmune epilepsy, presurgical evaluation, and the pathophysiology of functional seizures.
Parthvi is part of the ILAE-YES Communications and Interactive Media Task Force leader and study group leader for ILAE-YES Asia & Oceania Epilepsy Surgery study group.
Trained in India Parthvi is currently undergoing the year of supervised practice in Australia as a SIMG ( Specialist International Medical Graduate ) after which she will achieve FRACP Neurology.
Living on two continents with different cultures has been an incredible journey, broadening and sharpening her clinical perspective in neurology. Outside work, you’ll find her on a run, out on a hike with the family, devouring some delicious food (as she’s a big foodie!), or researching equity markets!
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