Barbara’s story

Published: February 02 2023
Last updated: February 06 2023

Barbara shares her experiences of epilepsy, and how it related to her pregnancy journey.

“I developed epilepsy when I was 2 years old. My seizures cause me to shake but I do not lose consciousness. As a child my seizures were irregular and slightly controlled by sodium valproate. However, I changed from this to a combination of Keppra and carbamazepine during my teenage years which reduced the frequency of my seizures to about once a year.

“When I was thinking about getting pregnant, I learned that taking carbamazepine could increase the chance of spinal issues in my child, so I started to reduce this medication. However I became pregnant when I was still taking some of it, which was a worrying time.

“I had no idea that pregnancy might effect my epilepsy or that my seizures may change. I went from having hardly any seizures to having three a week in my first and second trimester which was scary. I started to introduce lamotrigine alongside Keppra which reduced my seizures but didn’t manage to get them controlled in any way until my third trimester. This was a very worrying time for myself and my husband as we were sleep deprived due to the seizures and worried about me falling down and hurting myself or the baby.

“I opted for an elective C-section to reduce tiredness during labour as this is a seizure trigger for me. In a year which had felt out of my control, this felt like option I had most control over. The obstetrician said I had birth choices but knowing my own epilepsy this felt like the best option for me, even though I knew recovery would be harder.

“On the day of my C-section, I met all the people who would be in the theatre with me. They were all friendly and reassuring, and I was able to ask questions. The operation took 45 minutes, and I met my boy after only 10 minutes! We were able to request lowered lighting and music which helped me to stay calm and relaxed. It was amazing to meet my little boy.

“I was in hospital for two days. On the first day I was quite tired and that night there were a few times I felt like I might have a seizure. These didn’t lead to seizures, but each time I could press a button and the midwives came to sit with me. Everything like food and pain medication was taken care of well.

“My son was born at the beginning of 2023 and is healthy. Although the recovery has its challenges, I’m making good progress. It took me a few days to walk more comfortably but everything is healing well.

“I was worried about reducing my medication straight after birth as I felt it was too soon. I was listened to by health professionals and was told that I could take two weeks after birth before starting to reduce my epilepsy medication to see how my body reacts to less sleep. My body will start to process medication differently now I’m no longer pregnant so it will need to be reduced. I’m really glad I said something and was listened to as it made me feel less worried about night feeds. Everything is going well so far in terms of my epilepsy which I’m so pleased about.”


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