Epigraph Vol. 26 Issue 1, Winter 2024

"Talking about things that no one else will talk about": Torie Robinson, host of Epilepsy Sparks Insights

Reported, edited and produced by Nancy Volkers, ILAE communications officer

Cite this article: Volkers N. "Talking about things that no one else will talk about": Torie Robinson, host of Epilepsy Sparks Insights. Epigraph 2024; 26(1): 12-18.

Listen below or download the episode.

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For her podcast, Epilepsy Sparks Insights, Torie Robinson interviews epilepsy clinicians and scientists from around the world. Diagnosed with epilepsy at age 10, Torie is working to share knowledge with people with epilepsy, their families, and the public. Her episode topics range from the biochemistry of epilepsy to gastrointestinal issues and much, much more.



Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

Podcast Transcript

[00:00:00] ILAE: So today's episode, we are speaking with another podcaster and epilepsy advocate, and I'm going to let her introduce herself. So here we go.

[00:00:15] Torie Robinson: Oh, thank you very much for having me today, Nancy. My name is Torie Robinson. I'm a person from London in the UK at the moment. I have my own podcast called Epilepsy Sparks Insights which also is a company, Epilepsy Sparks, and I do public talks about epilepsies, comorbidities, and what it can be like to live with an epilepsy, because I have one myself. But I'm also a person who loves plants. So I think it's very important to say that people aren't or shouldn't be defined by their epilepsy alone. I love traveling. And yeah, I swear I'm getting less mature the more I age, but that's okay.

[00:00:56] ILAE: I think I'm right there with you. So can you tell us a bit about the podcast? Because I came across it and I was intrigued by it because you interview this wide range of people, and I would say the vast majority of them are clinicians and researchers. So can you explain how it came about and why you focused on that particular area?

[00:01:21] Torie Robinson: Well, first of all, I guess it was a little bit selfish, in that I have an absolute love for science and medicine. And I had kind of been reading all about this most of my life anyway, obviously not to this degree prior, and I love finding out more and more about the human brain, but I also realized post-surgery, which is something we could talk about, that largely the population was less, even less knowledgeable about the epilepsies than I'd realized, to put it politely. And I really wanted to try and help spread not just awareness, because I think that word is thrown around a bit. Like you can be aware of anything, like, what does that even mean? But try and spread an improved understanding of what epilepsy can mean.

And I figured the way to do that, or my way of doing that, was to actually speak to the experts in the field. So we're talking about clinicians and researchers and I'm not saying that people with an epilepsy and family members aren't experts, but I wanted to convey the cool, exciting, la di da, sciency, medical side of things to people.

Also, because I realized nobody else was really doing that, at least not from the same angle as myself. I just wanted to give it to people. I thought if it excited me, then maybe it might excite them as well.

And then in addition, also to help promote some people who I feel aren't promoted enough. It can be a really, really long journey once you've left medical school, or whatever you might be studying, you know, you've got your PhD, then get however many publications and how long is it going to take until you actually get recognition for what you are actually doing.

So I'm really trying to help promote the people that deserve to be promoted. And also their stuff is so exciting. So yeah, it's a two-way relationship, you know?

[00:03:13] ILAE: Yeah, absolutely. So you've mentioned your own epilepsy a couple of times. Can you give us a bit of a history, quick history on how things have gone for you.

[00:03:24] Torie Robinson: Yeah. So I had febrile status epilepticus when I was about 10 months old. And then I started having seizures, focal seizures when I was at primary school. The first one I remember, I was about 6 years old, but everyone just thought I was being weird, and my parents didn't notice I was being extra weird until I was 10 and then I was diagnosed with an epilepsy with no abnormalities showing on EEG at all. But as we know, that’s very common.

And then I was plunked straight onto antiseizure medications, obviously. And I was basically refractory. I've tried many different medications and my seizures were getting worse over time, more frequent, I was getting clusters. I went on to have secondary generalized seizures. And I had multiple accidents. I've smashed my collarbone on my desk, requiring two surgeries. I fell on the railway line during rush hour. I fell off my bike in the middle of the road. Didn't cycle after that. And lots of different things.

And then I saw the most magnificent clinician, called Tim Gaynor, who's now based in Germany, but was based here in London. And who kindly said to me that things weren't looking good in terms of lifespan, potential lifespan. So would I consider surgery? And I laughed. I loved how candid he was and said yes. And I was lucky to be suitable. So I had a temporal lobectomy; this was in 2013. But what happened after that, apart from a cerebral spinal fluid leak, which was no big deal, really, I then ended up in psychiatric hospital afterwards.

And I can say definitely in retrospect that that admission could have been prevented, or alternatively, should have happened many years earlier. So we know that mental health conditions or psychiatric illnesses are extremely common in people affected by the epilepsies. But the thing is sometimes, and this was in my case, even when my life expectancy was short, the psychiatric issues were affecting me much more than seizures. Seizures are just one thing. And I've said many times, I would rather have a seizure every single day of my life if it meant I was more stable mentally.

You know, how we feel inside is not visible. It doesn't mean it's not there. And I think we really, really need to follow that up with people with epilepsy and indeed their families and stuff.

So anyway, so that was joyful times in 2013 to 14. And yeah, so today, I still have seizures, but far fewer. I was having on average about one tonic-clonic a year post-surgery, but I've really cut those down by having therapy, mental health therapy. But the primary thing, I kid you not, has been getting more sleep. And that has really helped as well by, I take an antipsychotic, and that helps me sleep. It does help with my mood, I'm on a very low dosage, but it really helps, and without that, I would have been having multiple tonic-clonic seizures.

So today, I have focals maybe about once every three months or something like that. I had my first, that I'm aware of, status epilepticus since I was a baby a few months ago, and it was focal aware, and it was just the most horrific thing. I'm aware these are very rare. Because I was just thinking, “Oh, please can this become secondary generalized so I can get it over with, please.” And it never continued. It just remained there. It was pretty awful. But anyway, it gave me other insight into what some other people are going through as well.

Yeah, so that's my joyful little brain of today. And I'm just, yeah, trying to hopefully keep the seizures at bay, but also, and sometimes more importantly to me, I look after my mental health a bit better. So I have therapy and things like that. And that's ongoing. Yeah.

[00:07:22] ILAE: Well, thank you for sharing that.

And that's making me think about kind of swinging back to the podcast. Are there, are there particular topics that your own experience made you interested in discussing on the podcast? And how do you find people? Because you have had people on your podcast, which is Epilepsy Sparks Insights, one more time, you've had people on there talking about topics that are, you don't see anywhere else.

[00:07:52] Torie Robinson: I like talking about things that nobody else will talk about, especially if they are a bit taboo, because I think it's silly that things can be taboo when they are so impactful upon people's lives.

So you'll notice I've done ones about sex. I've done ones about pooing or defecating, you know, bowel issues. I mean, as far as I'm aware, we're all animals and this happens upon occasion, ideally daily. Why aren't we talking about it?

But also having spoken to so many other people or connected with online and chatted to them, so many people around the world. These are sometimes the issues that they want to bring up with a clinician, but they feel they can't.

Whether it's embarrassment or whether it's cultural issues, whether it's not having enough time, like people often go to the appointment, okay, if you're lucky you've got 10 minutes, what are you going to bring up? Often it's seizures, and then by the time you get more comfortable enough to bring these things up, it's the end of the appointment.

And I also noticed that, as in all parts of life, we have trends when it comes to research and what is cool to study, what is cool to give advice on. And I don't think talking about things like sex or defecation is yet cool enough, despite the impact it has on a person's life.

Also things like, you know interictal psychosis. Nobody talks about it. I wonder how many more people might go through it, but they just never tell anyone. For instance, I know a person who has, and she may or may not listen to this, I don't know, but who has ecstatic seizures. But she's ashamed to tell anybody because she feels they won't believe her. Her clinician is fine with it, but I wonder how many more people might be having those. So I like bringing up those topics. And what was your other question? I've forgotten now.

[00:09:51] ILAE: Just how you find those people.

[00:09:53] Torie Robinson: Oh, yeah. And how I find these people, well, I chat to people online. Most people I meet through Twitter. If I see somebody new, for instance, a new Twitter account, somebody's a... I don't know, they may either have been studying the epilepsies for a year or, you know, 15 years, but they're quiet. It's the quiet ones I often reach out to as well, and say, “So what are you up to?” Because I feel that they need more promotion sometimes. Yeah, I just, and look them up. And if it sounds interesting to me, or if I think it might be interesting to some other people, then I will ask them if they want to come on.

Obviously not everybody's up for it. Some people are too shy. Some people are too busy, but largely, yeah, people seem to be quite interested. And what I really appreciate is that more and more people are becoming, they see the worth in trying to help me bridge the gap between clinicians, researchers, and everyone else. It's not to be any more, well, we hope, a sort of two-tiered society or, you know, do you have people in silos that never connect. Instead more and more people are coming out, out of those silos and want to make that connection. So those type of people you can kind of tell online as well. So I'd reach out to them as well. Yeah.

[00:11:16] ILAE: You do some public speaking, and I've seen you on TV. And so it's like this whole scope of activities, right? Was that something that you sort of had, did you go to school for that? What was, did you have a past career or how, how did that come about?

[00:11:36] Torie Robinson: I didn't study media at all at school. I was either going to, this is funny, I was either going to be a dentist, a surgeon, or a, what was my other thing, or a commercial pilot. And I always feel upset about that because obviously I couldn't do any of those things.

My most impactful thing was I worked in corporate finance for a few years and yeah, and none of that was related to this at all. I had never been able to sort of follow my, the desire to learn more about the human brain. And I'd always wanted to help people in some way and I felt like I wasn't really doing that in finance and corporate.

For 9-11, I worked at the airport. So that was a really interesting job, which kind of ended because of my epilepsy, although I didn't realize it at the time. But yeah, so I, I'm just following my passion, which is to learn, learn, learn, although it takes me a while because of my cognitive function, or that thereof.

And, and it's just fun. It's just so ultra interesting to do this. So I'm just kind of playing, what do you call it? Flying by the seat of my pants or something like that. And hoping it kind of, you know, comes out okay. This is like awkward for me because I don't like really talking about myself. I'm trying to do this for other people. I hope through all of us working together, we can improve the lives of people in the future. And it sounds ultra cheesy and I might need a bucket actually now, but that's what I'm trying to help be achieved long term.

[00:13:03] ILAE: No, that's not cheesy. I think it's awesome. So, if you have an audience of, of clinicians whose lives are spent caring for people with epilepsy and their families, what would you choose to talk about?

[00:13:21] Torie Robinson: I would talk about first of all, mental health. I would try and get them to understand that there is no point in decreasing seizure frequency or ideally controlling it, if the impact of drugs or whatever it might be on the person's life is not acceptable. Some of us would rather have a seizure like every week or whatever, if it meant that we would have significant cognitive function and we could go to work.

From the perspective, say of people who are nonverbal and stuff like that, I would say, please don't forget us. Our lives are worth just as much as anybody else's, just because we might not be able to articulate it, or we might have degrees of intellectual disability, our lives are equally of worth.

I would also say that, sometimes I think the impact of having a child with an epilepsy, especially one that still has seizures, can be equally impactful on the parents as it can be on the child themselves.

Say for instance, I lose consciousness during a seizure. At least for that moment, I'm not conscious and I don't know what's going on. But the person who has to observe that and knows that they can't do much, largely, that's pretty horrific.

So I think, and also even I would say to clinicians, even if we'll say, okay, we don't have enough time to concentrate on the parents and the family members, even though we know they're important, I would say it's worth realizing that as animals, largely, we can sense how another person is feeling, even if we have degrees of intellectual disability and things like that. We know how the ones that love us and that we love feel to a degree. I mean, it's commonly, it's been researched that for instance, children will be impacted if their parents have depression, anxiety or suicidal ideation or whatever. And I think it's worth remembering that for the people affected by epilepsy who aren't able to talk to us verbally.

I would also like to say to them, it's okay to pimp yourself to us because we want to know all about your work and the research that you're doing. You don't need to be feeling embarrassed for telling us all the work that you're up to. And I'm saying this from my heart, but also having spoken to other people, even when we know that maybe at the moment, there's not a lot that can be done to control our seizures or improve our quality of life. However, just knowing that you guys are putting in all the effort like there is out there and you're doing work other than seeing us once or twice a year, because that's all we'll see and remember. If we know that you're doing all that other work behind the scenes and bring it out from behind the scenes, that's amazing because it helps us calm down a bit like, “Oh, we aren't forgotten.”

Share that with us. It would be amazing. Come on the podcast and I’ll share it with people if you like. Yeah, So without you guys, we're lost. And we appreciate what you're doing.

And also, oh, also one more thing, I'm really passionate about this. And this is perhaps not related so much to this question, but to everything as a whole. In terms of epilepsy promotion awareness, research, et cetera, we really, really need to try and work on how to get a more diverse population of people involved. Because it's pretty un diverse, I made that word up, at the moment, to put it politely and I think that could be a distinct benefit, especially for people from different backgrounds and different countries as well. Everybody deserves a voice.

[00:17:05] ILAE: Awesome. Thank you so much. My other, the other question is sort of like an attitude question and I'm not completely sure how to ask, but you're obviously you don't carry any shame about having epilepsy and a lot of people do so. Has that always been the case? And what would you tell people who do feel ashamed and they feel that stigma?

[00:17:28] Torie Robinson: So I don't feel ashamed that I have an epilepsy because the epilepsy isn't me anyway. The epilepsy is a disease that I have. I mean, it affects me like obviously getting tired and things like that because of the drugs, but and it has helped contribute to make me anxious and depressed and stuff, but it isn't me. And I have always been able to see it as such. So it's like part of some awful thing that's happening, whether it's down to genetics, whether it's down to whatever, but it's happening in my brain. It's affecting the rest of my body. It is not myself.

But I would say that, especially when I was younger, not everybody believed I had epilepsy. And even though I was having seizures and it was refractory epilepsy, they thought it was just something else. And that did cause me to have a deep-down feeling, almost a shame of who I was in the middle, because you don't, it's like the person was looking for a justification for everything I did wrong, if you like. Why is she falling asleep all the time? Why wasn't she doing so well at school? Not that this was said, but you know, you can tell culminating all the information from all around. That's kind of the picture. And then it wasn't until I had a tonic-clonic in front of this person that they were like, “Oh, okay. Yeah. I didn't really think you had it before.”

So, but anyway, knowing that when I was younger, without the person actually saying, “I don't believe you have epilepsy,” really contributed to me feeling, having a lack of self-worth that I am the failure because this is wrong with me.

Nobody should have to feel ashamed of having an epilepsy. I wouldn't feel ashamed of having asthma or diabetes or I shouldn't feel ashamed if I had schizophrenia. I have a personality disorder, they call it, which I hate the term for that, but I have an emotional disorder too. And I shouldn't have to feel ashamed for that either because it's not a choice. And people shouldn't be ashamed for having depression or, you know, I compare it seriously to going if somebody's an amputee, I'm not going to say, by the way, you should feel ashamed for having one leg. It's ridiculous. And that's the way that I see the epilepsies as well.

But you know, I've been brought up in a different country and environment to many people. And I see that other people might have different things affecting their own perception of epilepsy. Whether we're talking about religion, for instance, that can impact things, other parts of culture.

But at the end of the day, we are all of the same species. And I do, I strongly believe that if we all learn a bit more about what's happening in our brains, whether it's dodgy or not or certainly unwelcome, we can learn to see it as external to us. It's happening internally and you want to kind of bash its face in, but it's not part of you.

My tip for any families or any patients or clinicians looking to maybe advise their families and patients on how to improve quality of life is to learn more about your brain and your body and how they interact, but also learn what you can't change. You know, that is also really important. Because sometimes people say, you can do anything! Darling, really? No, you can't. You can't. Nobody could do everything.

And I, you know, I learned at a young age, it's not ideal for me to even attempt to become a commercial aircraft pilot, you know? So there are things that you can't do, as there are for everybody in this world, it's just that we may have to make more unfortunate compromises, to put it politely, than other people generally. But acceptance is a huge thing and that can come through education as well. In my opinion.

[00:21:23] ILAE: Thank you. Well, I'm sorry you never were able to become a commercial airline pilot, but that's good because now you're an amazing podcast host of Epilepsy Sparks Insights, which arguably is more important, but don't tell any pilots I said that. Is there anything else we didn't talk about that you wanted to mention?

[00:21:45] Torie Robinson: I'm sure there was, and I forgot what it was now because I should have written it down.

[00:21:49] ILAE: I was going to say, is it wrong that I'm asking you that because you may not remember what we talked about? I apologize.

[00:21:54] Torie Robinson: Yeah, there is that too. And I love that you just said that actually, that is hilarious. Do you know what? Maybe you should even include a bit about that in the podcast because I think it is quite funny. Do you know what? That's another thing I've really done is to laugh at myself more. Because, what else can you do, right?

I really want to try and encourage, you know, listeners to be a bit more open and more have a laugh where they can, you know, it's not funny, but it's funny.

[00:22:22] ILAE: Well, thank you so much for joining me today to talk about your podcast and yourself and we'll speak again soon.

[00:22:31] Torie Robinson: Indeed. Have a lovely day. See you later, Nancy.