James: Hello and welcome to the I’ve Got This Owning My Epilepsy Podcast series. My name is James, I’m 22 years of age, living in Sydney, Been living with epilepsy since I was 18. I’m here with Kaitlyn and today’s episode is Get Your Freak on, where we talk about epilepsy, relationships, and sexual health.

Kaitlyn: I’m Kaitlyn Parratt. I’m a neurologist, an epileptologist, working in Sydney, and I have a special interest in looking after young people and women with epilepsy as they navigate different periods in their lives.

James, being diagnosed with a medical condition of any sort when you’re young can be tricky. But epilepsy, with all of the nuances we’ve talked about, can be a little bit hard to communicate with your friends and your family, and particularly your partner.

Did you have a partner at the time you were diagnosed and how did you find navigating that whole space with them?

James: Yeah, I did have a partner still do have the same partner. Fortunately, she had found out shortly after when I was in the hospital and obviously really concerned. But I sat her down and went through everything about epilepsy and, you know, developed her understanding. It didn’t necessarily affect our relationship, basically, because I outlined everything and, you know, developed her understanding.

So just being patient, developing an understanding with my partner really did help. I didn’t have many, many or any issues really.

Kaitlyn: And can you imagine if that happened to you and you were single at the time and then you sort of met someone new? When do you think you’d talk to a partner about it? When would you discuss it? How would you go about that?

James: I would discuss it. You know, when you’re pretty interested and you see, you know, the relationship going somewhere or, you know, they’re an important person to you and you like them. It’s nothing you should hide, especially with your partner or anyone that you necessarily meet. And you know you’re looking for a future with anything.

I would just, you know, open up as soon as possible. Really. It’s you shouldn’t hide it and it’s nothing to be ashamed of because you didn’t put yourself in that situation. It’s. It’s not your fault. So just. Yes, as soon as possible, really. Or when you feel comfortable. And I guess that also comes down to, you know, being comfortable with, you know, what we’re talking about.

Kaitlyn: Did you worry ever that it’d have an impact on your intimate relationship with your partner?

James: To an extent, you might be worried, You know, in some certain situations, maybe, you know, you’re not feeling right, or you’re not, you know, maybe a little bit tired or anything like that. But no, not often. It doesn’t didn’t really and doesn’t affect me at all. And it shouldn’t really.

Kaitlyn: And your medication that you take, did you ever have concerns that that was impacting your intimate relationship with your partner?

James: Fortunately, no.

Kaitlyn: And that’s that’s a great thing. And most of the time medication doesn’t. But it’s one important thing, particularly for young people to be aware of, is that sometimes it’s a low risk. Some people can have problems with their sexual function as a consequence of medications, that it might not be something you kind of think, oh, that’s from the medication or want to be something you feel comfortable raising with your neurologist or your doctor.

But it’s important to consider that if you’ve seen a definite relationship between starting medication and problems with your intimate relationships, which may be different for men and women, and to talk about them to determine whether it is related to the medication at all. Because if it is, we can certainly adjust things and tweak things to make sure that you feel confident, you know, in your in your physical well-being and capability to have the sort of relationship that you want to have.

And it’s just something that often people might not think about.

James: Yeah, well, you know, if that was if I was in that position or if I was in that situation, the first thing I do is, is tell my neurologist about it, just see to get it all sorted and see the solution. It could be as simple as, you know, changing your medication, you know, being open.

I’m always here saying be open and be positive… But that’s that’s the best way to get help and, you know, push through things.

Kaitlyn: You’re absolutely right. Because those sorts of issues with maybe forming, relationships or intimacy may be related to medication uncommonly, but they may also be related to anxiety around the diagnosis or worrying about, you know, whether you might have a seizure during sex or something like that. And so being open and dissecting what could be impacting your relationships in a negative way is super important.

But sometimes it’s the elephant in the room because we’re all a bit, you know, kind of reluctant sometimes to talk openly about these things. So what you say is exactly true, even if you you know, you’ve only met your neurologist a few times where he had to talk about all of those things. And we talk about it all the time.

So it’s not it’s not anything to be reluctant or embarrassed to discuss. And whether it’s medicine or anxiety or trying to adjust to everything, that’s what we’re here to try to make, right, so that you can go ahead and get out there and meet people and have the relationships that you want to have, the issues that men and women face in this space can be quite different.

And that’s why we’re very fortunate to also have Ingrid and Rosie talking about the challenges that young women living with epilepsy can face with regards to their medications and potential impact on their contraception and family planning in the future.

Rosie: For a women’s perspective, I’m Rosie and I’m here with Professor Ingrid Scheffer.

When I was maybe 13, when one of the first times I see my neurologist, they talked to me about contraception or they’re like, you know, say, you know, when you’re going to get when you’re thinking about getting pregnant, you know, and then kind of gave all this information that you can’t be on this medication, you know, etc…

And I remember being like… what?

I was very shocked that they were bringing that up when I was quite young. And I thought out of all the things that epilepsy was going to, the way it was going to impact my life at that moment, contraception and pregnancy was like.

Ingrid: A million miles.

Rosie: A million miles away. And so it was a little bit confronting when a neurologist who you haven’t been saying for a while, brings that up because you’re sort of, you’re not thinking about that. And then suddenly you’re like, wait, should I be thinking about that when you’re quite young? And so I think that I probably wish that I didn’t get that conversation when I was so young.

But I guess as a neurologist, when do you think it’s important to start talking about reproductive plans? Because, you know, especially being on some medications, maybe that will impact pregnancy, when should sort of that conversation start with your patients?

Ingrid: Look, that’s a really great question, Rosie. I think it’s really interesting to hear your perspective about getting it too young. And I start it from the we talk about women of childbearing age. So strictly that’s when you get your period, which is when you’re 12 years old and you see an awful lot of girls. They almost go red when they start talking about it.

And then parents are shocked. You know, my little baby’s nowhere near pregnancy. But the problem for us as doctors is some girls get pregnant at 15, and you can’t pick them. You can’t say, this one will and that one won’t. So you’re left having to give that information. But I make a point of then reiterating it every year or two as you watch that young lady blossom into a young woman, and then at the right time, they hear it and they don’t go red quite as much.

And you also need to sort of get them to own this issue, because, as you said, it’s nothing that you’ve even thought about. It seems like light years away, having children and thankfully it usually is. But you just can’t pick the one where it might not be. So I do raise it from childbearing age. I also start to change the drugs over.

So there are some anti-seizure medicines that have major risks of teratogenicity, and it’s a big word, but it means damage to the baby. And that’s a real worry. And so if there are drugs that the girl is on, that could be risky for pregnancy from the time they start to menstruate and have their periods, I will think about how to move them to a safer anti-seizure medicine for their adult life.

And that may come with some risks of seizures coming back, etc., And so I think very carefully about the strategy, about getting them driving. So I will try maybe when they’re 15 before they can even think about driving at 18 to move them to a safer drug. But sometimes that’s a real balancing act and you can’t always get them off the drug that works best for them.

Then you have to deal with the issue of the safety for a baby if and when they fall pregnant.

Rosie: I found that there’s a lot of conflicting information out there about medications and what’s safe to be on. And contraception. Is it I assume it’s very important to bring it up with your neurologists as a patient if you’re maybe you haven’t seen your own neurologist for that long, and you don’t feel like you have a really, you know, a really great relationship or you’re a bit, you know, like embarrassed or shy to bring it up, how would you what advice would you give?

Because it obviously is a very important topic and it’s about your health. But how would you what advice would you give to bring it up and help them so that they don’t feel as embarrassed talking about it.

Ingrid: Really important questions. So there are a few things I would advise. One is to go in with a list. If you have a list and say, I’ve got these things, and then if you want to leave it till later in the consultation, maybe not walk in and ask the first thing that maybe the 5th thing, and then you can say, I also wanted to touch on this with you and just get your advice.

That’s a good idea. And the neurologist should be, you know, the major person, but your GP can also help you. And there are also a lot of community bodies that will have information and people that can talk you through it. But I think you neurologists is the most important in getting this right. And then the gynecologist obstetrician is also a useful resource for this.

So there are numerous ways you can try and get the information and decipher what you can see on the Internet and work out what’s really relates to you.

So did you find that your periods impacted your epilepsy at all?

Rosie: No because I got diagnosed pretty much the same time that I started getting my period, so I don’t know whether it made them better or worse or any impact on them, but I would be interested to know whether they can have an impact. 

Ingrid: I find lots of women come along and they think that their periods are making their seizures worse. So either just before their period or at the time of their period. And it’s very common that I think the human condition is we want to blame something. And maybe it’s these rotten periods women have to have that could make your epilepsy worse.

So what I do then is I get them to keep a seizure diary, which is just a piece of paper, much better than all the apps, because you can see it very clearly as six months on each side. And I get them to draw a red line when they have their periods. And then we actually look at the correlation and 99 times out of 100, there’s no correlation.

It’s just us wanting to say, why is my epilepsy worse at the moment? Now, if there is a correlation, there’s things we can do about that

Rosie: Looking back, I probably did find that because I get more tired on my period and then being tired used to increase my chances of seizures. There probably was that.

Ingrid: So your point is right. I mean, the biggest trigger to seizures is stress and fatigue. And often when one is premenstrual or menstrual, one might be a bit more tired and that could trigger seizures. But like I said, when you look at it objectively, often they don’t really have this around menstruation increase in seizures, but really they do. And then we have to think about it very carefully.

Rosie: Contraception is always a challenge. What would you say is the best method for women?

Ingrid: I think the best thing is to talk about it with your GP. It’s really not the province of the neurologists, but there are a whole lot of different ways you can use contraception. Obviously, the contraceptive pill is the most common and that can work very well. But in addition to that, there are intrauterine devices that you can also use and they can mean you might not have a period for five years, which lots of women would welcome.

So I think it is a complex discussion. The pill certainly can interact with your anti-seizure medicines and so often we recommend that patients have higher dose oral contraceptive pills because the anti-seizure medicines rev up the liver and that means they metabolize the pill more rapidly and that may mean it’s less effective. So, again, you need to be really up to speed with what the pill does, and what’s the best one for you.

Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “Let it Go,” Where Rosie and Ingrid discuss the role parents have in managing epilepsy.

This podcast has been produced by Lateral Connections with support from, Eisai Australia. The information in this podcast is general in nature and not intended to replace the advice of health care professionals. Please see your healthcare professional for any specific advice.