Pregnancy and contraception can be a difficult subject for women with epilepsy to discuss with their doctors, however, it is critical for reproductive health.
Women with epilepsy must face certain considerations when starting a family. This webinar focuses on the research surrounding epilepsy and pregnancy, as well as provides strategies to help minimize risks for both mother and baby.
This webinar is conducted by Dr. Elizabeth Gerard, Associate Professor of Neurology with a specialty in epilepsy at Northwestern University. Her clinical focus is contraceptive and pre-conception counseling as well as the management of epilepsy during pregnancy.
Q&A Transcript
Are there a lot of known genes, like filamin-A where you have a 50% chance of actually passing on that particular mutation to your child?
Yeah, there are. There are a growing number of genes where we know that they can be passed on what’s called an autosomal dominant form. So the one that I showed was an X linked form, but there is a growing number of autosomal dominant genes that can be passed on. One of the ones was actually a CURE Epilepsy email today about the SCN1A gene. That’s a very complicated gene because you have a 50% of chance of passing it on, but the symptoms in somebody who inherits it can vary. So somebody who can inherit it could be very normal with just febrile seizures, and another person who inherits it could have a more severe epileptic encephalopathy known as dravet syndrome.
So that’s an example of an autosomal dominant gene, where you have a 50% chance of passing it on, and it’s also an example of what makes it very difficult to do genetic counseling and genetic testing pre-pregnancy. There are growing number, still small, but a growing number of genes that are autosomal dominant, and I typically look in an adult population that can be passed on. So one of the ones is the LGI1 gene, which is associated with focal temporal lobe epilepsy with auditory features. So a lot of patients will hear symptoms before their seizures. It’s traditionally a pretty mild syndrome. Then there are the gator complex genes.
So DEPDC5, NPL3, NPL2. These are just some examples and I don’t have a specific number for you at this time of the number of autosomal dominant genes, but it’s growing. And so that’s an important thing to look at. Signs that you might have an autosomal dominant gene in your family, although it could always start with the individual who has epilepsy, but signs that it might be in your family are if you have several close relatives, usually first-degree relatives in your family. And that would be one of the things that would, if patients see me elevate my recommendation to consider genetic testing.
if you’re no longer looking to become pregnant, what are the reasons to stay on folic acid?
We traditionally recommend to all of our women who might get pregnant to be on some folic acid. Again, how much varies for patients who are still of reproductive age, before menopause, I usually have my patients on one milligram, although if they’re not really planning pregnancy, we can usually go down to the lower amount that’s in a women’s multivitamin or prenatal vitamin. Some people feel it’s good for hair and nails and stuff like that, but there’s not really any strong evidence to treat the epilepsy or other symptoms that a woman needs to continue on folic acid, other than planning pregnancy. We just traditionally continue it. We don’t usually continue it after menopause.
What are some strategies for women with epilepsy during labor or are C-sections more recommended/common?
We actually do not recommend C-sections for women with epilepsy. There isn’t any indication that just because of having a seizure disorder or having epilepsy that you need a C-section in our MONEAD trial, they’re looking at this data, but they’re very few in academic centers who know this information. It’s very rare to have C-sections done for purposes of epilepsy. So we don’t consider it a risk for C-sections. There have been studies that have shown in our country and other countries that C-sections are more commonly done for patients with epilepsy, but we suspect that this is more of just providers thinking that they need to do that rather than any kind of clear indication that needs to be done.
This question deals with a model that this woman follows called the Creighton Model. And she wanted to know if there are studies being done on this methodology and it’s use as a better understanding of women in epilepsy?
I don’t know the Creighton method per se, but I can speak to the issue of what’s known as catamenial epilepsy if that’s the question, but I’m not sure about the Creighton Model. It’s long been known that epilepsy can respond to hormonal fluctuations. So I had a few slides on that, but about 30% of women with epilepsy will find that in some way, their seizure frequency syncs up with their cycles. Usually in my experience, not exclusively that, but if you have more seizures during certain periods of the month, often it’s a few days before the period leading into the few days afterwards. I may actually show something.
So there’s a couple of different periods that people seem to be vulnerable to seizures. Again, 30% of women and those tend to be about ovulation or towards the end of the cycle. These patterns have been designed by Dr. Herzog. And so yes, for many of my patients, there’s different ways. This is an ovulation tracker that you can follow your period. This is actually a way we used to do in our clinic where we followed temperatures. And your temperature goes up when you ovulate and through the end of the cycle. So you can see for this patient, this is her temperatures. This is likely where she ovulated, and this is where her periods started and she had more seizures. This is the period here. She had more seizures, both around the time of ovulation and then leading up to her period.
Treatment for hormonally sensitive epilepsy. I’m not a believer that hormones cause the epilepsy, but that it’s one of many triggers that can trigger people’s epilepsy, just like sleep deprivation or alcohol or stuff like that. And so recognizing these kinds of patterns, I’m not sure of the Creighton method, but any other method can be very useful for women first just to identify the vulnerable periods of the month, and then there’s other strategies that are usually add-on strategies to try to control catamenial seizures. So this is my patient’s seizures here. I like to stress that I don’t think that hormonal treatments or approaches to hormonal modifications typically replace standard epilepsy treatments.
We still do first line treatments, anti-seizure medication, surgery if appropriate, but sometimes there are hormonal treatments that are given in addition to standard therapies. The evidence for this though is very limited. And then the other thing you can do though, and that I often do is that if you can recognize the pattern, which may be the participant was asking about, you can often give time to extra medications at the vulnerable periods of the cycle, and that can be very useful as well.
For women with epilepsy, what resources are available that can help them really track their seizures and track their menstrual cycles?
So seizuretracker.com, I know that they have been developing… it’s a great way to track your seizures and you can share with your doctor. There’s also the ability to put in your periods as well. Many of my younger patients just find that period tracker apps, there’s a ton of them available. They just do that and you can put symptoms in there as well. But seizure tracker is nice if you are in a computer. I know they were working on it, I don’t know if you can yet actually put the information in on your phone. That’s the only limitation for your periods, but they were working on developing that and right now on a computer, at least you can put in your periods as well as your seizures, and you can print out that information and provide it to your doctor.
Why is PCOS more common in women with epilepsy?
It’s not completely known. There’s some interesting research on that, but one of the reasons that we feel is actually early exposure to valproic acid or Depakote. So women who are exposed to valproic acid or Depakote in their teens are much higher risk of having a polycystic ovary syndrome, but there’s some other research in animals that there may be something to the epilepsy itself and to the frequency of seizures that may predispose to polycystic ovary syndrome, not just the valproic acid explanation and some of it is may be because seizures, particularly temporal lobe seizures involve the temporal which is right near, it gives feedback to the hypothalamus and pituitary, which then regulate ovulation. And so there are some theories about that, but there may be a direct effect on hormonal function that may lead to it. But those are the two main theories. One is valproic acid and then the other is this regulation of cycles.
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.