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Sparking interest and understanding in the epilepsies whilst bridging the communication gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Hosted by Torie Robinson.
**NOT FOR CLINICAL OR PATIENT DECISION-MAKING*
Visit www.torierobinson.com & www.epilepsysparks.com.
Trailer
00:00 Jacob Pellinen
“For some people they develop depression and anxiety before seizures start. And so there are other things that are happening in the brain before seizures start that we need to be thinking about.
Intro
00:10 Torie Robinson
Welcome to Epilepsy Sparks Insights! I’m your host, Torie Robinson, and today - well, this isn’t a usual episode - I’m sharing with you our past episode with neurologist and epileptologist Jacob Pellinen - to hear again all about some of his work on the Human Epilepsy Project! Jacob shares with us his research and results proving that people can experience things like learning difficulties at school or work before seizure onset and that many of us are having seizures and we don’t even know it! If you’re new here, please subscribe so you don’t miss future chats about epilepsy - and let’s get into today’s episode!
Meet Jacob Pellinen
0:44 Jacob Pellinen
I am Jacob Pellanen. I'm a neurologist and epileptologist at the University of Colorado and an assistant professor with the School of Medicine. I have been doing a lot of research lately on the Human Epilepsy Project (which is something I'll talk a little bit more about today) and that led to one of a recent publication - which is why I believe I was invited on this podcast.
01:10 Torie Robinson
Indeed, it's a topic in my opinion not touched on enough and developing epilepsy perhaps later on than people largely expect. Could you just tell us why did you decide to focus on the epilepsies? Because we need more of you and it's not quite a “cool” sphere to work in as far as neurology goes quite yet.
01:36 Jacob Pellinen
I went to medical school at the University of Colorado and kind of always knew I wanted to be a neurologist. What I was going to eventually gravitate towards, I hadn't figured out at that time, but as I started training in neurology and seeing all of the ways that seizures can present clinically and all the different treatments and the technology behind how we treat seizures nowadays, it was really inspiring. And I ran into a couple of very inspiring people at NYU where I trained and that's how I got started down this whole pathway - in both clinical care and research. And I would encourage trainees to look into the field and it certainly is something where neuroscience meets medicine in very exciting ways and can be very inspiring.
Epilepsy is more than seizures
02:34 Torie Robinson
The sphere is not limited to seizures alone, right? There's a lot more often challenging a person with an epilepsy than solely seizures.
02:43 Jacob Pellinen
Right. And you soon realise during your clinical training, even when you're focusing on things like seizures and epilepsy, that when your goal is to take care of people, it involves recognising a whole larger spectrum of potential issues and things that people are struggling with, anxiety, depression, and other issues going on in their lives that you need to think about.
Later epilepsy diagnosis & The Human Epilepsy Project
03:05 Torie Robinson
So, let's go on to this paper of yours, which I read the whole shebang, which certainly takes a certain amount of concentration I don't always have. So titled, this is quite long, but “Later onset focal epilepsy with roots in childhood, evidence from early learning difficulty and brain volumes in the human epilepsy project.”. So, tell us about that.
03:26 Jacob Pellinen
Let me start by just briefly describing the human epilepsy project because it was something and is something I've been doing research on for several years now. And it was a group of people with newly diagnosed and treated focal epilepsy. And it recruited almost 500 participants and followed everyone for at least three years and collected just a ton of information on their seizures, starting with what led to their diagnosis and then at the time of diagnosis, what treatments they were started on, their MRIs, their EEGs, and all of this other testing they got. And so, when I started looking at this data, I was interested initially in the enrolment data and what had led to people's diagnosis. How many seizures have they had? How long have things been going on? And some of the initial papers that I wrote on this were all based on that and how people can experience long delays to diagnosis and how people with subtle seizures (seizures that aren't overt convulsions), can slip under the radar and not be recognised by families and health care providers for long periods of time. So that was the first thing that I did, and then, separately, the imaging group with the Human Epilepsy Project had done an analysis and realised there was a group of people who had smaller brain volumes than other people and we weren't sure why. And so, one of the things that I did was look at what factors could be associated with reduced brain volumes in the Human Epilepsy Project. Is there a group of people who we don't understand their epilepsies very well yet or what's causing the seizures. And so that was kind of a whole area of investigation that led to this paper and is going to be leading to a lot more subsequent investigations after this. So, this current paper is basically just the tip of the iceberg. We saw that there was a change in brain volumes and sought to kind of figure out why, and I would say the two things that I found most interesting about this analysis were, number one, when I looked at everybody's pre-seizure or pre-diagnosis seizure histories, the number of seizures that people had and their seizure burden prior to being started on medications wasn't associated with any structural brain changes. So that was reassuring. People are having a lot of seizures and they get started on treatment, that's still early enough to prevent anything like focal atrophy, the temporal lobes, and other things that we found in groups of people that have seizures for much longer periods of time. And then the other thing that was very interesting was that the one association that we found with structural brain abnormalities was people reporting history of learning difficulties in childhood or in school. And in retrospect, I find people will, in clinic who I'm taking care of, will mention things like struggling in school and struggling with work prior to seizure onset. And we know that for some people that's the case, and for some people they develop depression and anxiety before seizures start. And so there are other things that are happening in the brain before seizures start that we need to be thinking about.
Anticipating seizure onset
07:29 Torie Robinson
So, I mean, this might sound random and totally impossible, but is there some way potentially that if we identify in a person that they seem to suddenly out of the blue be struggling on school or college, or they have an onset of depression with no identified cause; would it be worth speaking to a neurologist in that case? I mean, that happens to loads of people, doesn't it? So, I mean, how do you…
07:58 Jacob Pellinen
Yeah.
07:58 Torie Robinson
…take those early signs and figure out if that may be an epilepsy or not? Or do you just keep tuned and see if something else happens?
08:07 Jacob Pellinen
Yeah, that's a challenging question, especially when you kind of overlay the health care resources question on top of that, and the lack of resources, well, particularly the numbers of neurologists and epileptologists in different regions. But I would say that it's worth for any clinician to try to figure out what the underlying cause of new onset symptoms are. And part of what I would like to do over the course of my career is just increase the recognition of seizure symptoms and symptoms around seizures that are being under recognised. A lot of focal seizures have subtle symptoms that tend to get under diagnosed and under recognised and just recognising those earlier can make a big difference in people's lives.
Seizing for years before diagnosis
09:02 Torie Robinson
So, I was on the tube today. I just gone to see a friend and I was thinking time, for some reason, that I remember having what I considered to be tiny little focal seizures years ago when I was just traveling. For instance, they would happen almost daily, but I didn't recognise that for what it was. And it wouldn't get brought up with a clinician, one of my neurologists, it was, and I was just like, well, that's just feeling a bit funny and it's no big deal, it's not a seizure. That was the presumption I had back in the day. And now in retrospect, I'm thinking “Oh my God, that was valuable information to record and convey to my neurologist!”, would you agree?
09:47 Jacob Pellinen
Absolutely, I agree, and it's a surprisingly common story! I see people in my clinic all the time who have, you know, come in, they're brought in, they're referred to me because of a larger convulsive seizure and then when I'm getting into their history and talking about things with them, they'll realise, oh, I'm also having these other “sensations” that are short lasting, sudden onset, strange and they're all similar and that's really the hallmark of what a seizure is!
10:24 Torie Robinson
If you don't feel what you consider to be normal and it feels a bit weird inside, it's worth bringing up, right?
10:31 Jacob Pellinen
Definitely worth talking about.
Learning difficulties not Intellectual DIsability
10:33 Torie Robinson
I just want to clarify before when you said learning disabilities, and sometimes different clinicians I speak to there can be a bit of a confusion depending on, so if one says learning disabilities or intellectual disability or both, in your study what could you just clarify whom you were referring to who was involved?
10:52 Jacob Pellinen
Yeah, so the Human Epilepsy Project had pretty strict inclusion and exclusion criteria for that cohort and they wanted to try to mitigate the effects of significant developmental delays and neurocognitive disorders on looking at seizure outcomes. So, the study was designed to really look for biomarkers to assess for treatment responses. So, they were trying to reduce confounding variables. And what makes that interesting is it's a relatively normal range of cognition. Everyone who took a test and had an IQ score below 70 was excluded from participating. So, there's a broad range of cognitive functions, but kind of essentially within that normal range, more or less. And so, what we looked at was a screening questionnaire, and it's more what I would frame as learning difficulties than learning disabilities. So, this was a patient reported at a point in which people said “When I was in school, I had to repeat a grade, or I had to go to remediation for a subject, or I was diagnosed with a formal learning disability.”. Like, and there was a spectrum of them that they were asked about and other questionnaires. But kind of the presence of any one of those three things or combination of them, I put in a bucket of “Well, they were having a hard time in school more or less. And let's see if that correlates with anything.”. Because oftentimes, when I talk to people in clinic, they won't necessarily have had a formal diagnosis of something, but they can tell me they were really struggling with certain subjects and memory was a problem and depression was a problem. And so, you get these kind of… this constellation of symptoms. And a question in my mind is people who have this or have this finding on their brain MRIs, are they more difficult to treat or do they respond to specific treatments better than others? And how can we more rapidly optimise people's care? And so that that's kind of the avenue for future investigation, jumping off of this study into the next.
Closing thoughts & thanks
13:18 Torie Robinson
Well, thank you so much for the inspiration and I look forward to hearing more about your work in the future!
13:23 Jacob Pellinen
Thank you so much for having me.
13:25 Torie Robinson
Thank you to Jacob for such an exciting, insightful conversation - which, I personally related to! It was great to “hear” it all again! What really stood out to me though - was that epilepsy is often developing long before a person receives a diagnosis - and that subtle focal seizures, memory difficulties, anxiety, depression, or struggles at school or work, can sometimes be part of a way bigger neurological - and psychiatric - picture. Another important point - focal seizures can go unnoticed for years if people don’t know what they can present as!
If today’s chat taught you anything, please give this episode a like and subscribe to the channel so you don’t miss future episodes. And, if you work in this space - or you have experience with what we’ve spoken of - I’d be really interested to hear your perspective in the comments below. Thank you so much for listening, and I’ll see you next time.