We exist to improve the lives
of everyone affected by epilepsy


Smiles and trials of the first 12 weeks

These diaries were written in 2012 by mums with epilepsy. Lots of mums-to-be have found them really helpful and reassuring.

For up-to-date information about epilepsy and having a baby, go to Epilepsy Action's advice and information pages.

Many mums and parents-to-be decide that they want to keep their pregnancies quiet for awhile. This can be tough, as mum’s-to-be might experience nausea, tiredness, mood swings and (potentially) a change in their seizure frequency. 

Euggh - morning sickness!

Nicola: The days drag by until the first scan. I am convinced there will be something wrong. All I can think is that the risks of major birth malformation is double that for mothers without epilepsy (although still small). However, my neurologist keeps telling me that the risk is still only a couple of per cent and the best thing I can do is to relax. 

The other reason for counting the days is that the 12-week point is the magic time the morning sickness is supposed to go away. 

Please God! Throwing up outside Waterstones on the way to find a book about how to treat morning sickness is not very dignified. Neither is jumping out of the car in a traffic jam on the south circular. Head down the toilet in the privacy of my own bathroom if I must please…and lots of fennel tea and sympathy.

Really? Yuk!

Clair: I also suffered from morning sickness. I discussed this with my epilepsy nurse who said: “If you can see the tablets in the vomit, retake them”.
A bit disgusting but made sense! However my morning sickness built over the morning. I only actually vomited after about 9am, so I made sure I took my tablets plenty before that.

A lot of help from Hula Hoops

Faye: From week six to 14 of my pregnancy, I had really horrible morning sickness and complete exhaustion. I got through it eventually, with a lot of help from Hula Hoops! The main thing I was conscious of was being careful not to take my epilepsy medicine first thing (in case I was sick and lost it). So I waited until mid-morning to take my morning dose (to make sure I kept it down). I've continued to be a lot more tired than my friends. But I know pregnancy is different for every woman.

Rebecca: When my first visit to the midwife came around I was really nervous and excited! It was my first pregnancy, so I had no idea what to expect. I had a lot of questions about both my pregnancy and my epilepsy. I received good information about the pregnancy. But when I asked about my epilepsy she said: “I only deal with the ordinary” and therefore I would be referred to the ominously named 'High Risk Clinic'.

I felt worried about having to wait to find out how my epilepsy would be managed throughout my pregnancy. But I also felt reassured that there would be additional support available if needed. Luckily at this point in my pregnancy I was completely symptom free. My concerns at the beginning were much more about birth malformations and the impact of my medication.

Just by chance I had an appointment with my neurologist coming up. My neurologist is great. I always feel happy with the outcome of my appointments with her. The only down side is that she spends so long with each patient that sometimes you wait hours to see her!

Thankfully, my appointment date arrived and I found it as useful as always. She reassured me that my decision to continue taking my medication during pregnancy, had been a sound one. She said that breastfeeding would be safe. This is because my baby would have already been exposed to the lamotrigine in the womb - I found this a horrible idea! She also talked me through some safety issues involved in having a small child and epilepsy. I felt she was reassuring but also totally honest which I appreciated.

My neurologist also suggested that I saw her again, when I was six months pregnant. However, the earliest appointment available was six months. I would be eight months pregnant by then - this wasn't much use!

Sharing good news

Sarah: 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!  

“Many mums-to-be experience ‘morning’ sickness and might feel nauseous or actually vomit at anytime of the day or night. While it’s unpleasant, it’s not usually a problem. However if you tend to vomit shortly after taking your epilepsy medicine inform your GP or epilepsy specialist. You may need to adjust the time you take your epilepsy medicine. Your midwife will advise you to get plenty of rest, drink plenty of fluid and adjust your diet. This is so that you eat smaller more frequent meals and avoid foods that lead to nausea and vomiting. If the vomiting becomes more severe and you start to feel unwell, contact your GP or midwife urgently. You may require medication to stop the vomiting, and in some cases, treatment in hospital.” Kim

There are no comments yet. Be the first to comment...

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed