We fight to improve the lives
of everyone affected by epilepsy

 

Emma H

I was diagnosed with temporal lobe epilepsy when I was seven years old. My parents never made an issue out of it and I was always allowed to do things that I was safe to do. Until the age of 21, I was a competitive swimmer. Dispelling the common misconception that people with epilepsy are unable to swim (a problem I have encountered many times, even now)!

My advice – live your life! I have always been taught that my epilepsy should not dominate my life and it hasn’t. I have had a few ‘hiccups’ along the way, when consultants are fiddling around with my medication or if my triggers have gotten the better of me. Lack of sleep and stress during my first year at university caused me to have many tonic clonic seizures. This obviously set me back a few months. But the university were very good and allowed me to continue with my degree, as a physiotherapist, once I was over the worst of it.

I am happy to be where I am today. I would like to think this diary has reassured and given confidence to many ladies with epilepsy to start a family. I understand everyone’s condition is different and not all women can be as lucky as me. But with the right support, guidance and knowledge you can be just as good a mum as anyone without epilepsy.

Planning

We have always wanted a family. But we were also concerned about the risks of malformations to the baby.

My consultant was excellent. We were given all the information we needed to make a decision about my epilepsy care and treatment - before I became pregnant.

Not only was I taking valproate - but I was also taking lamotrigine. Taking two epilepsy medicines is said to carry a higher risk than taking just one. But for some of us, taking one medicine hasn’t effectively controlled our seizures.

However, I understood all the risks - which to me were small taking into account the other option of coming off medication altogether. This could cause me to have frequent seizures - not only risking my health, but also that of my unborn baby. For me it was a simple decision.

The moment I knew I was pregnant

When I became pregnant with my first daughter my husband and I were obviously very excited. There was however, the initial worry of how my epilepsy would cope during the pregnancy, birth and early parenthood. We were also concerned about the risks of malformations to the baby – I was taking two epilepsy medicines.

Tests and scans

In both of my pregnancies I had a late scan at 32 weeks. I suppose they were arranged because I was on two epilepsy medicines and because I’d had a few seizures.

I was relieved when the doctor suggested having an extra scan. If any malformation or problems had been found with our baby, it would have given us time to prepare and come to terms with any shock news before the baby arrived.

All went fairly well, and fortunately no malformations were found.

Coping with seizures

I had very bad pelvic girdle pain, and in my last trimester really wasn’t sleeping well. But my epilepsy during my pregnancies wasn’t too bad.

Lamotrigine levels can drop in pregnancy. So I had regular blood tests to monitor my lamotrigine levels, and my medication was adjusted as required.

In my first pregnancy - I had a few myoclonic jerks – which I suppose were warnings. So my consultant increased my medication and I was signed off work to allow me to rest. My second pregnancy went along the same kind of course. However I was signed off work a little earlier due to other complications (not related to my epilepsy).

I used forum4e when I was planning my pregnancy and while pregnant with both girls. I found that reading other people’s experiences really put my mind at ease.

Labour

The births of both my girls were nearly exactly the same. Both were long labours due to poor positioning of the babies, ending up with an epidural. 

I would have loved a water birth but was told this was not possible due to the risks with my epilepsy. As it turned out, I couldn’t have had one anyway. When my waters broke there was meconium in them – this is a sign that the baby is distressed. The midwives had to put a monitor around my tummy to check my baby’s heart rate throughout the labour. This would have allowed them to pick up any signs of distress quickly.

Both girls were born healthy and I was fine. I was kept in over night with both girls for general observation. But I think this was probably due to the meconium as well as the epilepsy.

Life as a new mum

I breastfed both Megan and Chloe. I heard a lot of things about not being able to breastfeed because of the medications. But my consultant reassured me it was fine. The only problem for me would be the night feeds and exhaustion you feel in those first few months.

My medications make me sleepy anyway – so for the first few months I felt like a zombie. The age gap between the girls is 19 months. Having a toddler and newborn would be hard work, even for someone who doesn’t have epilepsy.

Fortunately for me I had an excellent support network. To allow me to sleep when I needed to – I called in help from acrossEngland! My husband took time off work; Mum came from Leicestershire and my sister from Warwickshire.

I was also fortunate that Megan was still going to nursery one day a week. This gave me a little time catch up on sleep while Chloe was sleeping. I was that tired I used to have to put an alarm on my phone to remind me to take my epilepsy tablets!

And my health professionals - I would have preferred more support from my health visitor, but I can understand they are busy. Had I not had such a wonderful GP and consultant, I really wouldn’t have known where to go when things were getting tough during the pregnancy.

Chloe is now eight months old and I am still on the high dosage of medication that I was put on during my pregnancy. My consultant thought this was best – because tiredness is a trigger for my seizures and having two little ones can make you feel a little lethargic! I am due to have a treatment review with him when Chloe turns one, but I can contact him anytime should I need to discuss anything.

Final thoughts

I would urge any new mum to attend their local parent and children groups. I attended lots of these groups with Megan, and now with Megan and Chloe. Through the groups I built up an amazing network of friends, most of whom are now also on their second babies. The support from them was invaluable.

Honestly, there is nothing better than sitting around with others (who have also had a rubbish night’s sleep) just relaxing. Much better than sitting at home, thinking you are the only one feeling that terrible!

Emma H
Add your story

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed