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Epilepsy and Pregnancy – what to expect

Abby’s Story

I’m Abby and have been blogging here at Living Well with Epilepsy for a while. I had a baby, and I am proud to say that I stayed seizure free throughout my pregnancy (I did have some intense auras) but overall I did well.

Pregnancy and epilepsy

That said, there are a few things that I have to say about pregnancy and epilepsy.

One: it’s hard. It is by far the hardest thing I have ever done in my life for so many reasons, and I’ll get in to those for those of you kind of wanting to know more.

Two: it’s life changing, for obvious reasons.

Three: it’s worth it.

I do not want to scare anybody with epilepsy away from having a baby when I walk through my experience. First and foremost, know that you are not alone. My ultimate goal is to help educate women with epilepsy and maybe give them a sense of what can be expected and that it will all be okay. Rewind my life to when I was in the thick of pregnancy, I was not so sure.

Pregnancy is hard (epilepsy makes it a little harder)

I never could have imagined what I would go through and for purposes of keeping things simple for a blog post – there were three difficulties I had – morning sickness, severe depression, and pure exhaustion.

For starters, I had extreme morning sickness that lasted throughout the day. I was sick in the mornings (hence the name) and then again around 3:30 or 4 p.m. every. single. day. until around 22 weeks. Was getting sick an inconvenience? Absolutely. Do a lot of women have this? Yes. So why is it different for those of us with epilepsy? For starters, I could not keep my medicines down. When I would get sick in the morning, I’d usually lose some of my medicine. Not good, and my levels were dropping.

In addition, many women when these symptoms get bad enough, they are able to take an anti-nausea medicine to help them. Well, when it got the absolute worst, I took it, however the anti-nausea medicine safe for women who are pregnant can counteract your epilepsy medication, so you have to take it sparingly. Plus, there are side effects to the baby on that medication and you’ve already got enough side effects to worry about with the epilepsy medication by itself.

So, moral of the story, I took the anti-nausea medicine all of twice the entire pregnancy to ensure I did not have a seizure and that my meds stayed in my system. Other than that, all I can say is that I survived it while we continually increased my medication dosage.

Expect the unexpected

Second, for me, the depression was unexpected. This should be the happiest time of your life, right? For me, I believe that the depression came (or got worse) from not feeling well overall and not having enough time to give my body the proper rest it needed. I also am able to look back and know that some of that was because I was absolutely terrified that something would be wrong with the baby because of epilepsy, because of the medicine, because I would have a seizure, etc. My mind was constantly racing about if she was going to be healthy. The last part of feeling down came from the constant changing of my doses. My whole pregnancy, I’d go get my levels checked every two to three weeks and each time, my levels would drop because my body was metabolizing my medicine so fast. By the time my daughter was born, I was on three times my normal dose… also considered a “toxic dosage” as soon as I had her.

Sleep more if you can

Lastly, the exhaustion is overwhelming. It’s overwhelming for anybody. You’ll never meet a pregnant lady who is not totally exhausted. So, I do not want to say that the pure exhaustion is just for those of us with epilepsy. I DO want to say if I had to do it over again, I would work in time for more sleep and rest. I’d figure out a way to get more rest the next time around, because I do think I would have been in better shape all around had I taken a little better care of myself in this regard.
All that said (and I’m still exhausted by the way, just in a different way), Emma is the best thing that has ever happened to us. She was three and a half weeks early (so she was a preemie), but so far, she is healthy and doing fantastic!

Reach out for help

If you are thinking of getting pregnant or are already and struggling, please reach out. I had people help me (a BIG THANK YOU to Jess and Maureen) and I want to be there for somebody else and pay it forward. We are all in this together!

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Contributing Writer

Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern.

3 Responses

  1. kaylee
    | Reply

    Hi Abby. I’m almost 7 months pregnant, and was wondering if I could talk to you more about your late-pregnancy experiences.

  2. Lauren A Brunell
    | Reply

    I am nowhere near getting pregnant, as I have no found my man yet. But ever since my diagnosis, I think about this all the time. I hope that someday when I attempt to have children I remember you.
    Thanks for your post.

  3. Lorraine Lally
    | Reply

    IBE launches a special website for women with epilepsy
    Being diagnosed with epilepsy is a significant moment in anyone’s life but for a woman with epilepsy there are additional issues with which to contend, such as pregnancy, hormones, sexual relations and planning a healthy family.

    To provide women of childbearing age with all the information they need, IBE has developed a dedicated website brimming with information and support tools, which has just launched.

    The website was created following a survey involving 900 in nine countries across Europe which found that there is huge room for improvement when it comes to educating and supporting every woman with epilepsy who would like to have a child.
    While many women receive sound education and advice around the topic, others we surveyed told us that the information they received was frightening and confusing, with some deciding not to have children or being afraid to get pregnant because of it.
    Between a third and two thirds of those we surveyed, depending on the country, told us they didn’t get any information about contraception. High numbers also told us they weren’t given advice at all about planning their pregnancy.

    Trustworthy information and empathetic support is vital for women with epilepsy, particularly as they consider pregnancy, and this is what we have made available at WomenAndEpilepsy.org. We invite you to visit the site where you will find the answers to questions such as:
    Why is epilepsy different for women?
    What are hormones and how do they affect epilepsy?
    How does puberty affect epilepsy?
    Will epilepsy affect my sex life?
    Epilepsy and contraception
    Epilepsy and valproate
    Accidental or unplanned pregnancy
    What you need to know to have the healthiest pregnancy possible
    Risks to the foetus of an unmanaged pregnancy in a woman with epilepsy
    Questions for your doctor and much more!

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