Sexual Health & Epilepsy: Building CONFIDENCE for Patients & Clinicians - Drs Brad Kamitaki (RWJMS, USA) & Lucas Orellana (Jonas Salk Medical Center, Argentina)
Sexual health in epilepsy is vital - but often avoided. Epileptologists Dr. Brad Kamitaki and Dr. Lucas Orellana join Torie Robinson for a warm, open, giggly chat on building confidence for both patients and clinicians when talking about sexual health. They explore clinician and patient fears, cultural influences, and practical ways to create safe spaces for open conversations. Plus, get a sneak peek at the IBE Lisbon 2025 conference, where these important topics will be tackled interactively! Transcription and links are below! 👇🏻
Our talk "From Awkward to Empowered: Having truly 'patient-centered' conversations in epilepsy care and research" https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Brad Kamitaki
“I know we've been kind of talking separately about how we can help patients bring up topics they might not want to talk about and, like a forum where there's like, there's something I want to talk about, can we just bring it up without having to say it? Because I know, like, sort of, that there's a barrier, just like, you know, saying it.”
00:14 Torie Robinson
What is it that you are embarrassed to talk about with your doc or your nurse? Or, actually, what is it that you’re embarassed to talk about with your patient? Because, too often, for each party, the taboo topic is sex. Which is kinda crazy since we are all animals, mammals, primates, homo sapiens (you get what I’m saying) - it’s a natural, primitive thing that we DO, WANT to do, or think about - and much of the time our focus might not be on that spreadsheet or what your friend is saying - but on sex! Since sex is still so taboo amongst many, and because sexual dysfunction is so common amongst people with an epilepsy, it is a topic we are covering at our upcoming IEC conference in Lisbon, and today we hear - all talking about sex in the appointment - from Epileptologists Brad Kamitaki and Lucas Orellana!
If you haven’t done so already, please press the thumbs-up for this episode, comment below, and subscribe to our channel, so that we can get way more people around the world - clinicians, patients, and the general public - learning facts about the epilepsies!
01:17 Brad Kamitaki
My name's Brad Kamitaki, I'm an assistant professor of neurology at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey, and I see people with epilepsy, do some research, teach medical students, residents, fellows.
01:31 Lucas Orellana
My name is Lucas Orellana. I'm from Buenos Aires, Argentina. I'm an adult neurologist and epileptologist as well.
01:39 Torie Robinson
Last week we spoke about one of the topics that people don't like to talk about in appointments, which was suicide. But this week we're talking about S-E-X. So, why is sex seen as such a challenging topic to bring up - by both parties in fact. Let's start with clinicians. Brad, why is it difficult from your perspective or can it be difficult?
02:08 Brad Kamitaki
I think it's probably the fear of expectation of how the patient might take it, you know, I wouldn't want to, you know, if it's something they weren't expecting, I guess, you know, I wouldn't want to make them feel uncomfortable or, yeah, bring up something they weren't prepared to talk about. You know, sometimes I notice that we have certain topics that we want to bring up that the patient may not have, you know, expected - sex being, you know, could be one of them. But that's kind of my fear, I guess, my internal fear, my thoughts about it,
02:39 Torie Robinson
So it's not actually about talking, it's not doing the talking about the topic, it's about the potential reaction of the patient.
02:46 Brad Kamitaki
I would say so, yeah, for me.
02:48 Lucas Orellana
As Brad says, probably from the point of view of the clinician, there is sometimes some worry about offending the patient, probably during the first interviews. But from the side of the patient sometimes; having that fear that what you say is a little bit embarrassing or ridiculous or okay, so first of all; these are the common situations that ⁓ usually happen, especially during the first meetings.
03:22 Torie Robinson
And then there's the looking at it from the perspective of the person with the epilepsy as well. And sometimes their family, if they're family in the room… oh my god, that just makes me want to cringe just to the thought of it! But as a patient or person with an epilepsy, even I am rather open-minded and open here on this podcast, but just the thought of like “By the way…”... I don't know if it's something from when I was little or it's a societal thing, I just like, yeahhhh, you know, but I do speak and have spoken about it, but it doesn't come easily. What are your thoughts on how what it can be like for the people with the epilepsy?
03:59 Brad Kamitaki
Yeah, mean, I think definitely if it's something on their mind, I'm sure it's great, it's good to have the space to bring it up. So, you know, I know we've been kind of talking separately about how we can help patients bring up topics they might not want to talk about and, like a forum where there's like, there's something I want to talk about, can we just bring it up without having to say it? Because I know, like, sort of, that there's a barrier, just like, you know, saying it.
04:24 Torie Robinson
Some cultures are grown-ups in this world. They're totally cool with it. It's a… it's a function of who they are as humans, and they're totally cool to speak about it. And I would love to grow up one day and be like that because I think it's great. But not all of us in the world are yet like that!
04:41 Lucas Orellana
Well, I think that the complexity resides on the fact that there are different cultural backgrounds (as you mentioned), languages, identities. This changes daily. So it's our work that we can adapt to the new times and to adapt to the new realities. If we work on that, this idea of talking about this is like a big advance to probably previous decades where these topics probably were not talked [about] because when we talk about sex and epilepsy, we're talking about some traditionally considered “secondary” issue, but I don't know if that really a secondary... as secondary as is probably thought. I think that is as primary as the control of seizures.
05:42 Torie Robinson
Thank you. I think that's really powerful what you've just said. And even if, I know I've said this a million times, things like this, but the thing is, if you look at people's quality of life, and often that's in relationships, and it can be in sexual relationships sometimes, and if that's not where you feel it should be or could be, that affects how you feel and could actually indirectly be responsible for seizures.
06:05 Brad Kamitaki
I was just thinking Lucas, as you were talking, like, probably people aren't used to even bringing up sex with their doctors in the first place. Like, I wonder when we started. I mean, I'm sure, like, my parents' generation, probably, it wouldn't be “natural” to bring it up with a doctor, or even anyone probably!
06:22 Torie Robinson
I think that's why lots of them drank alcohol so much, actually. Not that people of this generation don't, but yeah…
06:30 Torie Robinson
Have you guys had any “interesting” - which might be kind of funny upon reflection, but weren't so funny at the time - events, talking about sex with a patient or even a colleague?
06:41 Lucas Orellana
To be honest, no, but the good thing for me is that at first patients are sometimes a little bit shy about talking about these kind of issues. But, with the passage of time and the interviews and having a more confident space, probably they throw the subject spontaneously. And I think that this is great because this is our aim: to make a safe space for people with epilepsy to talk about these and other considered taboo subjects. But particularly I didn't have any particular, or I don't remember that!
07:31 Torie Robinson
We're talking about “yet”. I'm sure you will at some point. So get ready. What about you, Brad? Have you had any experiences in this realm yet?
07:38 Brad Kamitaki
Yeah, definitely, more the patients I've known longer. think, as you said, Lucas, like perhaps it's not the first visit, but, you know, the fourth, fifth, you know, even [after a] few years seeing them. So, yeah, definitely patients have brought it up. I have to admit, I need to ask about it more. Maybe I'll have more stories in that case! But I was just thinking, remembering as I was listening to your last video about sex and epilepsy, how lamotrogine might be…might increase sexual desire. And I've had actually a patient say the opposite, you know. So I think whereas another patient said clobazam - which you might think might put them to sleep or, you know, put them out of the mood - actually another patient said that increased his sexual…
08:23 Torie Robinson
How interesting!
08:23 Brad Kamitaki
…sort of drive! Yeah! So, it's so interesting. I think it's hard to say, like, you know, everyone's so different. And of course we know that in how people respond to medications, their side effects. So, I think, yeah, like keeping an open mind, like… of course, like keeping your clinic a non-judgment zone, like, does lead to some interesting conversations that I wasn't really trained for, you know, I would say!. I've had other patients ask for, you know, Viagra, like erection, erectile ⁓ dysfunction medications. So I mean, you know, something I did learn about and tried to prescribe if I'm able to, you know, like if they don't have a primary care physician, for example. So yeah, I mean it's been like, constantly it's a learning process and and yeah, there's definitely questions that come up that always surprised me, I guess you could say!
09:14 Torie Robinson
But I guess you welcome them anyway, right? Just because they surprise you doesn't make them bad questions.
09:19 Brad Kamitaki
Mmm-hmm, definitely. And if I have to look it up, I think, you know… or ask someone like, you know, for example, like a family medicine colleague, you know, what do you do with this situation? Yeah. Learning is always good!
09:33 Torie Robinson
When it comes to diversity of patients and families, because we all come from different backgrounds, religions, cultures, et cetera, et cetera, have in your experiences, have you found that that has impacted your ability to talk to them about sex or for them to talk to you about it? Or do we need a study on that? Or I don't know.
09:58 Lucas Orellana
Yes, totally. It's always a challenge, but, well, as we mentioned before, it's all about adaptation, adapting ourselves to these situations that not only happen in the field of epilepsy, but in medicine in general. So, I think that if we work on that, I think that everything has its time.
So, for me at least, I prefer that patients and families pace the time. So not all the subjects (such as sex) are going to be discussed probably during the first meetings.
10:41 Torie Robinson
Right!
10:41 Lucas Orellana
This, probably in some cases, yes, and that would be depending on, as we mentioned, culture and the history behind that patient and that family, and the previous ⁓ members of that family. fears, personal experiences. So, I think that everything should be taken in account.
11:06 Torie Robinson
Open mindedness, think is a key thing here.
11:10 Brad Kamitaki
Yeah, I mean, this is something, like, that's I think also evolving in medical education too. I mean, when I was a student, which I mean was like 2008, you know, so not that long ago when I started medical school, there was this like movement towards “cultural competence” where it's like, you should know about every culture and try to anticipate like, I mean, it can come up with very stereotyped sort of things that, you know, kind of get in there. And now we've moved towards basically, kind of a different approach, where we're curious: we don't know, we can't know everything about everyone's culture, but being curious, like, you know, everything we're saying, asking those questions, asking permission to talk about subjects, which I think is, you know, something… an approach that you can take. You know, really, we're moving towards that direction with sex as well. Like, when I was a student, I learned this. like: ask every patient or ask your patients in clinic “Do you have sex with men, women, or both?” You know, it's like the sexual question, you know, sexual history screening question. And obviously there's like a lot more than just that, you know…
12:21 Torie Robinson
There are other choices, right? Options!
12:21 Brad Kamitaki
…who your partners are. Yeah, yeah, yeah. Right. Definitely now, you know, the, you know, yes, not just the gender binary, of course, but also like, you know, sexual practices. So there's, there's much more in the sexual history, I guess, that we're trying to teach our students that I certainly learned, which, you again, wasn't even that long ago.
12:42 Torie Robinson
It's so good. think we're getting better and more open-minded, and I think that's what we need. So! We are going to be talking about sex in Lisbon!
12:50 Brad Kamitaki
Hahaha!
12:51 Torie Robinson
I’m not sure if we'll literally be talking about sex on a stage, but we're certainly going to have an audience there. And sex is one of our topics. So, we're going to be presenting about the awkward topics that nobody wants to bring up or lots of people don't want to bring up in a consultation, whether they be a clinician or be the patient or be the family. And so it's great that we're doing all together myself as a patient and you guys as the clinicians and we’ll role play as well… Tell us about the role play! What's going to happen?!
13:19 Lucas Orellana
There's going to be a really interactive theatrical…
13:24 Brad Kamitaki
Hahaha!
13:24 Lucas Orellana
…way to make this session more fun and more funny and it's going to be good.
13:34 Brad Kamitaki
It's going to be really interactive sessions. So, hopefully if you come, yeah, come ready to talk and discuss, and we're also having some audience role play - I mean, you know, in small groups where, you know, you can try to think about approaching difficult topics, whether as a patient clinician, you know, yeah, so a lot of, a lot of fun activities, I would say. Yeah!
13:58 Torie Robinson
Thank you so much to Brad and Lucas for such a fun, candid chat! Come and meet us at the International Epilepsy Congress in Lisbon - with our colleagues Milena Gandy and Heidi Munger Clary (who are from the podcast last week!) - at 8am on Monday Sept 1st in Pavillion 3C!
Check out more about Brad and Lucas at the website torierobinson.com and you can access this podcast, the video, and the transcription of this entire episode all in one place - and links to the Congress as well. And if you haven’t done so already, please press the thumbs-up for this episode, comment below, and subscribe to our channel, so that we can get way more people around the world - clinicians, patients, and the general public - learning facts about the epilepsies!
See you next week!
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Dr. Brad Kamitaki is an assistant professor of neurology at Rutgers Robert Wood Johnson Medical School (RWJMS). He was born and raised in Honolulu, Hawaii, and graduated from Pomona College, where he majored in Japanese language and literature. He obtained his medical degree from the University of Hawai’i John A. Burns School of Medicine. Dr. Kamitaki completed both his neurology residency and two-year clinical neurophysiology and epilepsy fellowship at Columbia University Medical Center in New York City.
Since joining the medical school in 2018, Brad has published on several clinical epilepsy topics, with a focus on patient outcomes and health services research. His multi-center observational study examining factors that predict a refractory outcome in patients with idiopathic generalised epilepsy was awarded the 2023 Epilepsia Clinical Science Prize for a young researcher. His work aimed at addressing barriers to comprehensive epilepsy care using quantitative and mixed-methods approaches has been funded by the American Epilepsy Society and the New Jersey Health Foundation. Brad is a current Resource Center for Alzheimer's and Dementia Research in Asian and Pacific Americans (RCASIA) pilot scholar investigating disparities in neurological care for this population. He also serves as the co-director for the health equity thread for undergraduate medical education at RWJMS.
Previous episode with Brad:
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Dr Lucas Orellana is an adult epileptologist from Buenos Aires, Argentina.
Lucas is a member of the Argentinean Neurology Society (SNA), the Argentinean League Against Epilepsy (LACE), and the YES (Young Epilepsy Section) Latin America of the ILAE (International League Against Epilepsy).
He is currently a staff member and organiser of the Epilepsy section of Jonas Salk Medical Center. He is also working in the Neurology department of FLENI Institute.
Lucas’ main areas of interest are currently electroencephalography and the pharmacological aspect of seizure treatment.
Lucas enjoys teaching, and believes in the importance of continuous medical education.
Links to Lucas:
LinkedIn Lucas Orellana
Doctoralia Lucas Orellana
ResearchGate Lucas Orellana
Previous episodes with Lucas: