Saturday, 1 February 2014

Neuro Nula - my story

I've been writing my story for a website called Neuro Nula and it's made me reflect on my experience of epilepsy so I thought I'd share it to reflect on why I started this blog:

I’m Clair, I'm 29 and this is my story…

I was diagnosed with epilepsy when I was 19 after having a couple of tonic-clonic seizures.  Looking back now I think I’ve had focal seizures most of my life.  I get a funny wave feeling of fear that washes over me and then my vision alters, it lasts a couple of seconds and my consciousness doesn’t really alter.  But these were only diagnosed as seizures a couple of years ago.

My epilepsy has never been severe, for that I feel blessed.  In the beginning before I started medication I had one tonic-clonic a month but soon after starting Lamotrigine I was free of major seizures for over a year.  But it’s never completely gone away, I’ll go a year, sometimes two without a tonic-clonic seizure and then for no apparent reason I’ll have another one.  I have the odd focal seizure every now and again.  I don’t get a warning before my tonic-clonic seizures and so have hurt myself a few times, I guess it means it’s always in the back of my mind – what if I have a seizure right now...

I think it helps that I have such wonderful family and friends; I can never thank my Mum and husband Rich enough for all they do to support me, from picking up the pieces after a seizure to the everyday things like giving me lifts places.  I don’t know what I’d do without them.

I think I’ve accepted my epilepsy, I know it’s something I’ll probably have to live with for the rest of my life.  I’ve also never wanted epilepsy to stop me from living my life and doing all the things I want to do and I think I’ve succeeded with that.  I went to university, got married, ride my horse and ski.  I am pretty independent, I know the local trains and buses like the back of my hand and it may take me a while but I can get anywhere on public transport!

I’ve tried to see the positive in my epilepsy, it’s a way I can help other people.  I started volunteering for Epilepsy Action, giving epilepsy awareness presentations, not long after I was diagnosed and I was interviewed for the Youth Health Talk website.  I’ve always believed talking about my epilepsy will help the big picture, reduce the stigma.  When you start talking about it people are interested and want to ask questions, I find being open about my epilepsy is one of the best ways of spreading awareness.

What I really want to share with you is my experience of becoming a mum.  It is one of the most amazing things that I have done in my life.  I know some women who have decided against starting a family because of their epilepsy and I wanted to do something to help women feel more confident and supported in having a baby.  It just happened that not long after my pregnancy, Epilepsy Action started their Healthe Mums-to-be campaign which I got involved in.

I kept a blog during my pregnancy and that has grown into a Mum’s blog which I hope other women with epilepsy find useful.  If you want to read more about my story you can find my blog at www.becomingamumwithepilepsy.blogspot.co.uk.

I found out I was pregnant about a week after having a tonic-clonic seizure.  I was over the moon but terrified at the same time.  What could my seizure have done to the baby, has the baby been affected by my epilepsy medication… being pregnant and having epilepsy is pretty daunting.  At my 12 month scan I remember being so scared, but when I saw our baby and being told everything looked fine and was completely ‘average’ I was so relieved and excited, it made it all seem so real.

My pregnancy after that went quite smoothly, I was very lucky, I was already being seen by an epilepsy specialist in London who was fantastic.  I had 2 epilepsy nurses I could call anytime and my local hospital where I was having the baby was really supported.  I had a lot of extra appointments and checks, I felt really looked after.  Probably the best thing was that my friend (we’d been friends since nursery school) happened to be a student midwife at the hospital; she asked if she could use me as a case study.  It couldn’t have worked out better; she came to all my appointments and made sure all my notes were in place.  But I did feel very alone, like I was the only one going through it, I didn’t know anyone else with epilepsy who’d had a baby, that’s why I started my blog to make sure other women knew they weren’t alone.

There are lots of things to consider when starting a family if you have epilepsy, but they are no reason not to have a baby, it just needs a bit more thought and planning.  It is always best to try to plan your pregnancy, talk to your doctor about your medication, especially if you are taking sodium valproate which has been shown to have a much higher risk of birth defects as well as childhood developmental problems.  It’s important to have a plan for labour and you can discuss this with your specialist and to know that most women can breastfeed while taking epilepsy medication (although often they are told they can’t).  Most women who have epilepsy have normal pregnancies and labours and have beautiful healthy babies.

You can find lots more information in the Epilepsy Action HealthE mum-to-be campaign: https://www.epilepsy.org.uk/pressreleases/national/new-campaign-provides-support-pregnant-women-epilepsy or on my blog.

From an epilepsy point of view my labour went to plan, it did have other complications, but Riley Elizabeth was born at 6pm on Jubilee Sunday weighing 8lb8oz and perfectly healthy.

Becoming a mum is both a wonderful moment but also takes a lot of adjustment for anyone let alone if you have epilepsy.  I always say to women that if they don’t feel that unbreakable bond as soon as they see their baby it is completely normal, I found it took time to build the bond, but I know that when Riley smiled for the first time I would do absolutely anything for her.

Looking after a baby when you have epilepsy is also pretty daunting.  But the most important thing to remember is you are a mum with epilepsy not the other way round.  I always carried Riley up the stairs in her car seat, I had a dead break put on my buggy, and I didn’t bath her on my own – practical things to keep her safe.  But I didn’t let it stop me being a mum.  One of the other challenges is not being able to drive, getting the bus with a newborn baby is pretty scary, my family and friends helped by giving me lifts to start with but I soon got the hang of getting buses and trains, and I lost all my baby weight with the exercise.  I think one of the most important things was getting out and about and spending time with other people, not getting isolated.  I have made some wonderful friends through being a mum, no-one judges me because I my epilepsy.


As Riley is growing up and exploring the world it is amazing to watch her and I love her so much. There are going to be challenges to face in the future, some regarding my epilepsy and some not.  But right now I am enjoying being a mummy.  I don’t know what the future will hold for us, but all I know is I am very lucky to have a wonderful husband and beautiful, healthy little girl.


Neuro Nula aims to bring people living, or caring for someone, with a neurological condition together to share their experiences, advice and make new friends in a place free from judgement and stigmatisation.
Neuro Nula will provide a safe, moderated forum, links to neurological organisations and access to the stories of people affected by a range of neurological conditions. If you would like to share your story, contact NeuroNula@live.com 

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