Us
Let’s start with the simple stuff. I’m Faye, 28 years old and live in London with my husband (we have just celebrated our first wedding anniversary)and our puppy Patch.
I work full time (shift work), love being active, running and socializing. I also have epilepsy – but does this matter?
Let’s rewind a little
I was diagnosed with epilepsy at the age of seven. I was prescribed sodium valproate and this controlled my seizures. At the age of 14 I was weaned off my meds. All was fine.
Then at 21 – my seizures started again. I started taking sodium valproate until my nurse changed my medication and I began to take lamotrigine. This was possibly my nurse’s wisest move. While SV was a good med for controlling my seizures, it’s not the safest epilepsy med to expose an unborn baby to. Does this matter when children aren’t on your mind? Well around half of pregnancies are thought to be unplanned so……
My epilepsy tends to consists of auras, absences and generally feeling fuzzy headed, with the occasional tonic-clonic seizure for good measure. I finally got some seizure control about 18 months ago, and all was smooth until October 25, 2014.
Two blue lines
So in October I suddenly started having auras. For me, auras are like having tinted vision – everything seems a little bit far away, and very spaced out. I was really concerned. I know that epilepsy does as it pleases – but it had been so well controlled for so long. Hell I’d even run two marathons.
So on the 25 October I went to the toilet with a magic stick. A ha! I found out why – we were having a baby! That moment when you realize that the test is positive, is one that you can never fully describe. I thought that I was going to pass out. I didn’t quite believe it!
However I had to do one thing. One thing that I can say is my all-time favorite thing that I have ever done. I told my husband that he was going to be a dad, a moment that will stay with me forever.
So does this – my epilepsy – matter?
Ours wasn’t an unplanned pregnancy, but thanks to my very good epilepsy nurse, I had started taking 5mg of folic acid since December 2013. My nurse has been amazing, but I was shocked at how little information and support there is available for mums-to-be with epilepsy. I had millions of questions – but nowhere to turn for answers. I don’t know one other mum or mum-to-be with epilepsy.
I also found that my epilepsy did matter. No sooner had I done the test when the morning sickness started and my epilepsy got worse. My GP (who is amazing) has given me some anti-sickness tablets. This is to prevent sickness and help me to keep my meds down, pretty important in controlling epilepsy.
The lamotrigine I take has also been affected. During pregnancy the hormone estrogen increases and this increase can lead to the level of lamotrigine in one’s body to drop. In my case – this has lead to my seizures breaking through again.
So I sit here, 10 weeks and five days pregnant. Our parents, siblings, closest friends and my line manager all know my news. For me, telling my line manager was a practical move, due to my epilepsy and my sickness. Our families and close friends know because we just couldn’t keep it in. I found it hard not to tell anyone – but the longer I stay mum – the less I want to tell people. I like us being in our little bubble.
Of course people at work have become suspicious, but I think that I’ve managed to throw them off the scent. But with Christmas fast approaching…… I’m not sure how long this will last.
But how am I really?
Giddy and excited but – if I’m honest I am finding it hard to adjust to life with my seizures again.
My meds have been increased after a phone call to my neurologist and I have my first obstetrics appointment with my neurology team in two days. It can’t come quick enough!
My amazing nurse has left to work at another hospital and I’m apprehensive about who will fill her place and when. I need help and guidance and it would be great to talk to a nurse I know and trust. Once again, I’ve been back to the internet and the forums, looking for information, support and just about anything that will help me.
And that’s why I’m doing this. If I can connect and help one other mum – I’ll be happy. Also someone might have an answer to my questions. I also think that writing my blog, sharing my pregnancy with other mums through this blog and Epilepsy Action will help me.
