On Friday 19th October 2018, a new National ‘Tea Break’ campaign for Epilepsy Action launches, so we invited a good friend of ours, Rachael, to come and tell us about living with epilepsy and being a great mum to her gorgeous daughter, Erin.
Motherhood & Epilepsy by Rachael
Hi, my name is Rachael and I’m an Epileptic! It sounds weird and sometimes I wish I was saying alcoholic as with epilepsy it is completely out of my control. It can hit at anytime and the unpredictability is the only thing, in the 16 years that I’ve had it, that I haven’t been able to get to grips with.
I first started having seizures when I was 17 and the neurologist believed it was brought on by adolescence. I had passed my driving test not long previous, so I had my licence revoked, which was a big blow. But after a few seizures I was finally diagnosed, put on medication and it was all under control… well, for 18 months. My life seemed to continue like that for quite a few years. Every 18 months or so, I would have a seizure which resulted in my medication either being increased or changed.
When I met my husband-to-be he was great with my epilepsy and always made sure I took my tablets. We always knew that if we were to have children they had to be planned. During the first few years of our relationship I had to take 4 contraceptive pills, due to the amount of anti-epileptic drugs I was taking at the time. The epileptic drugs lower the level of contraception needed so I had to take 4 to level it out.
There was a number of things my neurologist advised that I needed to do in order to get pregnant; be off contraception for 18 months prior to “trying”, take a higher dose of folic acid due to my drugs for as long as possible before “trying” and the final task was to be on as low dosage of anti-epileptic drugs as possible.
I was on 2 different types of medication at the time, one that claimed to be ‘safe’ in pregnancy (although not 100% safe) and the other was a new drug that didn’t have clinical evidence regarding effects in pregnancy, so I chose to reduce this one.
After an amazing seizure free pregnancy (sickness was ridiculous though) I had a beautiful little girl delivered naturally, which again they advised against but I managed in their timescales. We went home Dave, Erin and myself to start our family life together.
Everything was going perfect until 4 weeks in when I had 4 seizures in the space of a few hours. I had to be sedated and sent to see if my brain had been damaged. Luckily it was fine (I think… although I’m not sure I’ve ever been ‘quite all there’). A couple of days later it happened again, and I kept having regular seizures. The hospital believed it was brought on from the hormones after pregnancy.
At the time of Erin’s birth we lived in Greater Manchester. Whilst home with my newborn I had a siezure…I don’t exactly know what happened, but luckily Erin was safe. Alarm bells rang and it was clear that we needed additional support whilst Dave was away at work. So we moved back home to Middlesbrough to be with family.
Looking back, without my parents I don’t think we’d have coped. After this experience, I started doing things by the book; feeding Erin on the floor surrounded by cushions and no cooking or ironing unless someone was with me.
A year later I was still having seizures so I opted to have a Vagal Nerve Stimulator (VNS) fitted, it is very much like a pace maker but it connects to your vagal nerve (in your neck) instead of your heart and it sends electronic impulses to stop the seizures. This has reduced my seizures massively and helps me recover a lot quicker.
The VNS has been a god send as it has allowed for life to go on even in the event of a seizure. My recovery time is much quicker and I’m much more aware. I no longer hesitate on planning things or going to events, which previously I would have done. I’m a much more confident person with it and I know that if anything were to happen I’d only be out a short time and now I recognise people straight after. Most importantly, all this means I have the confidence to do more things with Erin.
Erin has seen me have a lot of my seizures, she is very brave and so strong. If there is any advice I can give to anybody it is always tell your children everything. They pick up more than we often think, so it’s better to be honest with them and help them understand. They are so resilient.
Erin is 4 now and knows how to call an ambulance, what to do if I have a seizure and has done since she could walk and talk. If they don’t know about something they are more likely to be scared or upset. I have always been open and honest with everyone about my epilepsy due to it’s unpredictability, if people are aware then they can help.
I’m so proud of my daughter, and taking that risk to start a family despite my epilepsy, was worth it a million times over. It’s hard for women suffering from epilepsy who desperately want to have children but are aware of the high risks it involves. My advice is to plan well ahead , talk through all your options with the medical professionals involved in your care and most importantly, make sure you have a good support network around you.
My families journey with epilepsy doesn’t end here but together we will overcome what ever it throws at us and I’ll be damned if it stops me being the best mum to my little girl!