We fight to improve the lives
of everyone affected by epilepsy

 

Sarah

Planning

I did not have any pre-conception counselling before I fell pregnant with my first child. Louie was a surprise!

As soon as I found out that I was pregnant I phoned my epilepsy specialist nurse (ESN). She was really helpful and made sure that I had all the information I needed to get off to a good start. She also spoke to my consultant and midwife to make sure that I received the right care for both my pregnancy and my epilepsy.

I have always found my ESN a key part of my epilepsy journey. She gave meconfidence in how I cope with my condition and helped me communicate with my workplace and family about my epilepsy.

So when we started to think about planning a second pregnancy, I contacted my ESN to make an appointment. During my appointment we discussed all of my worries and care options. My ESN gave me all the facts related to pregnancy, epilepsy and epilepsy medicines and told me to take folic acid before we started trying for the baby.

I had seizures in my first pregnancy, so I decided not to change my medication at all during my second pregnancy. I wanted to protect my baby from my seizures as much as I could. I was taking lamotrigine and agreed to have my blood levels regularly monitored. This is because a drop in my lamotrigine levels during pregnancy could make a seizure more likely to happen.

The responsibility of caring for a toddler (Louie) as well as myself and my unborn child was really daunting. I wanted to make sure that I could still care for and keep Louie safe – having seizures again could pose a problem. My ESN reassured me that my team would keep a close eye on my lamotrigine levels. She empowered me to keep healthy and be observant of what my body was doing.

By the time that I left her office, I was fully reassured and encouraged that baby number two was the right thing for our family.

The moment I knew I was pregnant

I had to lie down! My husband had gone to work and would not be back until late, and I didn’t want to tell him I was pregnant while he was at work.

It did not feel like it was really happening to me, but at the same time I wanted to find out if all would be okay. I would be lying if I didn’t admit that I was worried for a moment. When I saw my ESN in the summer I told her that I was not planning a pregnancy for some time. So I had very little information on how epilepsy could affect a pregnancy. The lack of information is what I think made me worry.

With my second pregnancy it was different. After my pre-conception counselling, we soon went on a holiday. About five weeks afterwards, I found out I was pregnant. This time was much more exciting; I had all the information I needed and expected to fall pregnant!

The first 12 weeks

We found with both pregnancies that the first 12 weeks seemed to go on forever. I did a pregnancy test at five weeks, so we knew pretty early.

I needed my husband, he had to be really understanding.I had mood swings and was very tired. It was hard to put into words how tired I was during the first few weeks - especially to a man who had no idea how I felt.

Sometimes I have severe mood swings before and after a seizure. So whenever I felt emotional, we made sure that I had time and space to rest and that he could keep a close eye on me. We also moved my medication to on top of our microwave – sounds simple but making my medication visible reminded me to take it. It is hard to remember to take your medication when you’re feeling sick and looking after a toddler!

Many couples decide not to tell anyone until their first scan, but we wanted to tell some close friends our news. We found it helpful to take people up on their offers of help from the very beginning. As a working mum it was important that I was able to rest and have quality time with my family.

I am very open about my epilepsy with my employers. I decided to tell them about my pregnancy when I was eight weeks pregnant. I felt it would be helpful for them to know, so that they could make my workplace as safe as possible for me. Thankfully I had no seizures during the first 12 weeks. However, I needed some extra loo breaks along the way!

There’s something magical about carrying a baby and it being a secret from people. You know that there is someone deeply wonderful growing inside of you, that the world will not see for another nine months.

When I was pregnant, I ate A LOT! I found myself eating late at night, anything and everything! I also wanted to chew on bathroom sponges. Everyone is shocked when I tell them, but online I found many pregnant women who craved bathroom sponges!

Epilepsy and pregnancy register

I decided during my first and second pregnancy to join the pregnancy register. I believed it was important to give the medical professionals my data. This allows them to build a better picture of what we [women with epilepsy] experience. It will help women who are planning pregnancies in the future to make decisions. After registering it is of no extra effort to you, as your caregivers [medical team] submit the data.

Sarah
Add your story

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed