Epilepsy and what to do about getting pregnant and growing a baby
Epilepsy is pretty common, about about 1% of our population take some form of anti-epileptic medication and about 2000 women in Australia each year have a pregnancy when they have epilepsy.
The effect of anti-epileptic drugs are highly relevant to women's health from the contraceptive choice, right up to the management of pregnancy and breastfeeding. If this is you, then this podcast will give you tonnes of answers.
We talk about:
Who is in your healthcare team
Contraception and epilepsy
Folate needs during pre-pregnancy and pregnancy
Labour and epilepsy
How your medication needs may change during pregnancy and breastfeeding
Photo by @sisterscout_
Brigid: Well, welcome everyone. This is episode 35 of the kick.
Dr Pat: welcome everybody.
Brigid: And today we thought what we'd do is epilepsy and pregnancy, which is yet again, another request from actually many listeners.
And I'm sad to say that probably the very first listener she's probably had her baby by now.
Dr Pat: Probably. I think that it's been really interesting to me. Just how many people have asked for this one to be covered and I've learned something, I didn't know quite what the incidence was in our community of people who are on antiepileptic drugs or just how many people in Australia each year are pregnant, who also have epilepsy.
Brigid: Yeah, that's right. And so it may not be everybody's listening, but for those people that do have epilepsy we're really going to cover a lot. So it'll be gold. I want to start with a, a lovely review. And it's from Mrs. M. five stars.
She's said “ What a great podcast. I started listening to this podcast during time of trying to conceive. And in February of this year, we did just that after two and a half years and almost age 40. It was quite incredible. I have enjoyed all these episodes and they have given me many topics to discuss with my obstetrician and it's opened up a line of appropriate questions. I look forward to the episodes to come and the knowledge that I will be able to take with me into the hospital with me in early November.”
Dr Pat: Isn't that fantastic. That's a really great point. And it's one of the reasons why we're doing this is that because she feels educated and informed she's able to talk to her caregivers at a better level.
Brigid: Yeah. And it's, it's really back to that. "You know, you don't know what you don't know". So if you don't know what questions to ask, then you're never really going to get the answers that you actually need in the heat of the moment.
So if you're being prepared and going into that labor prepared that's a big tick for us. Isn't it? Absolutely. We get all excited. I'm looking across at your Paddy and you… we are very tired. Aren't we?
Dr Pat: That's been one of those weeks. I've been up at night a lot this week.
Brigid: And I don't sleep very well when you're not in the bed
Dr Pat: I was whinging the other day about being up at night a lot. And then I remembered my own advice that I give my, well, I call them junior burgers that the junior doctors who work at my hospital. Yeah. So I'm their supervisor. And if they're in obstetrics and they're whinging about being up at night, I always remind them of that classic episode of the Simpsons, where the bullies have got two or three of the nerds strung up on a, on a fence by their jocks. [00:03:00] And one nerd turns to the other nerd and says, this is the life we chose.
And I just think that that's so true about obstetrics. If you’re an obstetrician, that's the way it goes.
Brigid: That's right. And I'm just collateral, right?
Dr Pat: That's your bad luck, you know, that's marrying an obstetrician. That's, that's the life you chose
Brigid: and I love it. It's all great. So, all right. Let's get on with the program, which is.
Epilepsy and pregnancy, I'm going to start and say, I know pretty much nothing about epilepsy. So this is all new to me.
Dr Pat: Me too say, well, I know more than I used to in preparation for this, because whilst I'm no stranger to managing pregnancy issues for people who have epilepsy and are on antiepileptic drugs, it was interesting for me to find out in preparation for today's discussion that almost 1% of our population are on an antiepileptic medication. That seems a lot to me.
Brigid: It does seem a lot like 1%, one in 100 it's a lot.
Dr Pat: And then [00:04:00] each year around 2000 women in Australia have a pregnancy when they have epilepsy. Which is again, a surprising figure to me. The issue here is that both the condition of epilepsy, but more importantly, the effect of antiepileptic drugs are highly relevant to women's health from the contraceptive choice, right up to the management of pregnancy.
And it really needs a sort of a multidisciplinary approach from general practice in particular, in the pre pregnancy phase through neurologist for optimum medication choice, which might change over the woman's reproductive lifetime. And of course the obstetrician.
Brigid: Let's say that someone does listen to this episode who doesn't have epilepsy.
Could we go back to basics and just sort of say, well, what is the condition?
Dr Pat: Yeah, well, epilepsy is a neurological condition. It's a very common neurological condition and it's the most common neurological condition that we deal with in obstetrics. So this will typically be something that a person's had [00:05:00] for many years and neurological disorder that predisposes people to having seizures.
And typically the woman will be on medication that controls those seizures. Ideally. Well, Uh, sometimes control is imperfect and the medications that the woman might need to control, those seizures are complex and have some complex ramifications for gynae and obstetric care.
Brigid: And you mentioned contraceptive, like if we go back before a person gets pregnant, what does a woman who has epilepsy need for her contraception?
Dr Pat: Yeah. Well, one of the first things she needs is something that's really reliable. So some anti epileptic drugs. Affect the metabolism of folate or folic acid, such that if the woman became unexpectedly pregnant on those drugs, she might be at significantly higher risk of neural tube defects, like spinal bifida and encephale, very serious things.
So if she's on one of those medications that affects folate metabolism, she might be better off taking [00:06:00] the five milligram folate dose leading up to becoming pregnant rather than the 500 micrograms. So 10 times the dose. And that's why it's quite important if at all possible that a pregnancy in someone with epilepsy is planned.
Right? So the first thing that we would want for contraception is reliability. And some other antiepileptic drugs also affect the metabolism of contraceptive pills. Oh wow. So they share a metabolism pathway in the liver so that if the liver is busy with antiepileptic drugs, then the pill might be abnormally, metabolized and less reliable.
Brigid: What about things like the Mirena or other contraceptives?
Dr Pat: Yeah, absolutely. So you might go with those instead. Yeah. So traditionally women with epilepsy were on a high dose pill, but they can have their own issues. And Mirena is probably the ideal ,or a copper IUD, is probably the ideal contraceptive with great reliability. Doesn't rely on someone remembering to take it every day.
And largely [00:07:00] unaffected by this issue of metabolism in the liver that the antiepileptic drugs can provoke.
Brigid: And I know you're saying that. Ideally. It's great. If a pregnancy is planned, but what about if somebody does get pregnant while they're taking the antiepileptic drugs?
Dr Pat: Yeah. So that just needs early attention.
So that ideally we can move perhaps onto a better drug for pregnancy and also. Initiate some surveillance for some of the problems that might have been caused by becoming pregnant on those medications. So straight into the GP early and opinion from neurologist and obstetrician, nice and early.
Brigid: And I'm imagining someone with epilepsy perhaps has had that from a very early age, but can it develop around the time that you might be getting pregnant.
Dr Pat: Yeah, sure. So it can, it can sort of come on at any time. And so not everyone won't be able to be prepared for everybody, but if we're prepared for as many women as possible, and that's a good thing.
Brigid: And you mentioned that you might change the drugs that they're on during pregnancy.
[00:08:00] So what happens there?
Dr Pat: Well, that's where the neurologist comes in and the neurologist will be able to assess that woman's pattern of seizures. What sort of control she's likely to need. And how realistic is it that we can perhaps get that woman off the drugs that are much more problematic in pregnancy onto some of the other ones that are less problematic and still maintain good control.
See, the problem is that if we make a major changes and the woman starts having seizures, the seizure's dangerous too. If you're pregnant. Well, the baby is prone to becoming potentially affected or damaged from prolonged periods of hypoxia.
Brigid: So if not getting enough oxygen?
Dr Pat: Yeah, exactly. So if the woman's having a lot of seizures and there, for example, that results in hypoxia, the woman's having difficulty breathing during a seizure.
Or, you know, God forbid some sort of accident you get a seizure, driving the car, or run swimming or in a bath or something like that. Then those things are [00:09:00] obviously very dangerous for the woman, but also therefore for the baby. So it's a balance between optimum safety on the medication, but not reducing or stopping medication to the point where you don't have more seizures.
Brigid: Are there better drugs?
Dr Pat: Yeah. There are a better drugs. And so that's where the neurologist comes in to say, okay, well, are we suitable to changing to a safer drug for pregnancy without promoting more seizures?
Brigid: So what does the woman's team look like in pregnancy? She's got her obstetrician. I, you know, it would be considered a high risk pregnancy.
Dr Pat: I think so. Yeah. And so there's the neurologist, the general practitioner. And then with the obstetrician, what we would typically do is our general obstetric care, but also some special things too, as surveillance against some of the problems that we see in women on antiepileptic medications on occasions.
So that's those neural tube defects. Plus there's a higher risk of other [00:10:00] congenital abnormalities, typically cardiac abnormalities. And facial clefts.
Brigid: What do you mean by facial clefts?
Dr Pat: Cleft lip and palate. Yeah. So as the obstetrician, what we would do is, is get some nice early scanning done by the best person we know.
Right. So go off to a, a super expert clinic and on the referral, not just. Please have a look this baby in the usual way, but this woman's on antiepileptic medication. She's at higher risk of a facial cleft. Could you please have a super close look for them?
Brigid: What do you mean by heart problems?
Dr Pat: Oh, you know, cardiac abnormalities where there's holes in the heart and so forth
Brigid: Oh gosh, some people have a hard time don't they?
Dr Pat: yes, but you know, we're so much better at managing all of these things than we ever were in the past.
Yeah. And the key to this [00:12:00] is that multidisciplinary approach or obstetrician won't be, is not a consultant neurologist and won't be 100% on top of all the latest developments in. antiepileptic medication. So you got to see them as well.
Brigid: Yeah. And I love that point because some people will see, I don't know, a health practitioner from various ilks , that person will deal with it all.
However, when it comes to consultants, I see you all the time. Like you stick to your knitting. So if this person needs help with a neurologist or a psychologist or whatever it is, then I think the beauty about the medical system is that everybody sticks to their craft group
Dr Pat: here. I think that's right.
And then there needs to be someone coordinating that and that's the role of a good GP. And then it's also, I think the role of a good obstetrician. If you're seeing an obstetrician directly for your pregnancy, that that person is helping you coordinate those other services. And. For example, coming back to epilepsy [00:13:00] for a moment, they're making sure that you are seeing your neurologist, that, and that the feedback is coming from the neurologist saying, yes, I've checked the drug levels.
That's in the therapeutic range or we're on the best drug we can, we're not having any seizures, carry on.
Brigid: Yeah. And when it comes to folate like does a woman have a blood test to check her levels of fall late in the first place? Or is it just a part of the course that you would be.
Dr Pat: Yeah. So we've discussed this elsewhere for people who don't have epilepsy that the 500 microgram dietary supplement amount is because it's possible, but quite difficult to get enough folate from your diet.
So to make absolutely sure. That we're getting 500 micrograms, which has been correlated with the drop in neural tube defects. A supplement is the easiest and safest way to do that. Cause you can be very confident. You're getting enough and there are some small groups of people who the, their followup metabolism is more complicated, but for [00:14:00] most of us, that's the way to do it
Brigid: is that that mother
Dr Pat: gene?
Yes that's the MTHR gene and, and, um, and people who need their folate in a slightly different form.
But remember that's the exception, not the rule. So for most, for most women leading into pregnancy after contraceptive stops, take start taking an ordinary amount of folate in a pregnancy multivitamin or by itself. And then again, with, with people who are. On these medications that put them at higher risk, there's a definite benefit by taking 10 times as much.
Okay. Why did they decide on 10 times as much? Probably it's a round figure that says if you take this much, you know, you're very likely to be fine.
Brigid: Is there a problem with taking too much folate?
Dr Pat: Well, no, but you just don't need that much. So there's evidence that 500 micrograms is enough
Brigid: is enough. Good.
Alright. So. What about, like, if we've gone through the pregnancy and all as well, and we've got to labor, is there any, like, do they need to be induced or is there any sort of interventions or any special needs?
Dr Pat: It's not, Induction. Probably not. Um, especially if the situation is stable, but [00:15:00] labor's differently.
A danger time
Brigid: What if they have a seizure during labor?
Dr Pat: Yeah. So the seizures are often provoked in people with epilepsy by tiredness, pain. Exhaustion. There are three really common provoking things for a seizure and is all of those things. So it might take a long time. First baby, it's painful and it's stressful. It can be stressful.
So it's a risk time. There's also a problem that in active labor, very active labor, your body naturally shunts blood the way, from your stomach towards your uterus, which is working very hard. So. That's the same phenomenon. It's like, you don't stop for it for lunch in the middle of a marathon, but absorption from the gut's, not very good when you're using all your muscles in your body to run the marathon or your uterus to run the labor and antiepileptic drugs given via the stomach via swallowing the drug.
It might not be terribly well absorbed in labor either. So that's a potentially risky [00:16:00] situation and we need to be all set up for that.
Brigid: . Is it only that pathway, could you maybe have an IV anti-seizure drug?
Dr Pat: there are some IV drugs and that's something that we might even do in conjunction with her neurologist, for someone who was potentially unstable.
Yeah. And pain can obviously be managed. Yes. And the duration of the labor can be managed. And these are some of the situations in obstetrics that get a little complicated because we may wind up interfering a fair bit because the cost of not interfering might be higher.
Brigid: Yeah. And I suppose that's what this podcast is about.
So somebody that perhaps is a first time mum, who has epilepsy going into her labor, it's kind of good to know that you will have potentially higher intervention.
Dr Pat: Well, I think it is, we think it is. Yeah, because none of the interventions are for fun. They're there because we feel that the price of not doing those things could be much higher.
And I think if we communicate well with our patients, it's to bring them along with us on that thought process. Yeah. [00:17:00] And so I'm not, I'm not suggesting that you have an epidural for no reason. I'm suggesting that you have an epidural because throughout your life with epilepsy, bad pain has caused you a seizure.
Brigid: And that's all case by case isn't it? So whatever patient they'll know what their triggers may be, or
Dr Pat: I saw exactly that once, a woman who had always had a epileptic seizure in response to severe pain right throughout her life. And she had a seizure in labor, I was the consultant on call and I was called in to assess her situation.
And honestly, I thought if I'd been involved from the beginning and we'd made a better plan for that patient, it might've been that we had acknowledged that respected that, that, that pain causes are fit in this woman and popped an epidural in at the start of the labor.
Brigid: Yeah. Yeah. Oh gosh.
Dr Pat: Or at least recommended
Brigid: that and recommended that's right.
I think that's everything that we talk about is about increasing someone's satisfaction during that [00:18:00] process. So they're not blindsided. Like that's the whole reason we do grow my baby. Really? Isn't it. Yeah.
Dr Pat: We're trying to help women feel that interventions are not thrust upon them, but to bring them along and say,
here's here's why we're recommending this. Yeah. What do you think? And if you agree. Let's do it.
Brigid: Yep. Yep. And yes, we can't help every medical person's communication or lack thereof, but at least you'll know going in. What about they've had their baby all's well, and they've started to breastfeed. Do those antiepileptic drugs, are they problematic for breastfeeding?
Dr Pat: Some are. Right. So what we might do at that point is, again, in conjunction with our friends, the neurologists, we might change again, change the drug again to something that gives us the best breastfeeding safety without compromising the seizure control. Again, it's not an ideal time to have a feed either.
If you're at home looking after a baby,
Brigid: maybe by yourself,
Dr Pat: it could be by self. Exactly. Yeah. So a seizure control is paramount. [00:19:00] There are safer options. And in conjunction with the neurologist, we'd find one weigh up that risk benefit ratio and find them.
Brigid: Yes, but it is an option available to women who are epileptic to breastfeed if that's what they choose
Dr Pat: with the right.
Brigid: Yeah. Wow. Okay. Well, I really hope that that episode has been good for those that have epilepsy and they know they've got epilepsy, they've come into the pregnancy and they're sort of concerned about what their pregnancy and labor might look like
Dr Pat: yeah. Or nerds like us who just like,
Brigid: like listening. And I know that there are people out there that listen to all our episodes, every single one,
Dr Pat: even the ones that don't apply directly to them.
I think that's cool. That's if I wasn't an obstetrician, I'd like to think I'd listened anyway.
Brigid: Yeah. Yeah. That's exactly right. Alright. Well, everyone have a fantastic week. Hopefully we'll get the next podcast out in a week. Not the 10, 12 days that we've been managing we are trying hard.
Dr Pat: Thank you for listening everybody. [00:20:00]