PYB Health Hero Series: Not Letting Epilepsy Control Life!

PYB Health Hero Series: Not Letting Epilepsy Control Life!

Bridgend is a great community and we want to share local stories about our ‘PYB Health Heros’. Those who have made great achievements when it comes to their own health and wellbeing. And those, who encourage others to join in and make a difference to their own lives too.

In this edition of our PYB Health Heros we hear from the amazing Louise, a local lady who has been battling epilepsy since 2012, but she has quit smoking, lost weight and is well on her way to running the London Marathon this year!

Louise’s Story

“In 2010 I developed cholesteatoma in my left ear (an abnormal, noncancerous skin growth that can develop in the middle section of your ear, behind the eardrum) which required surgery in 2011 to remove the cholesteatoma (disease) and rebuild my inner ear that the cholesteatoma had destroyed. In 2012, just 3 days after my 33rd birthday I had my first seizure. I came around and had no idea who my family were. It was terrifying.

I was taken to hospital for overnight observation and a CT Scan and discharged the next day feeling weak, exhausted and so frightened. Being told that I could not drive for a few months was hard to deal with but I kept hope that the seizure was a one off. However, it wasn’t a one off, over the next year I had 3 more tonic clonic seizures each one worse than the last.

More CT Scans and EEG Tests followed but the one thing that I found was every time I was coming around from a seizure, I would have the most horrendous earache in my left ear. Seizure number 3 actually happened in A&E in June 2013 while I was sitting with my Nan who had been in a car accident, I ended up in the bed next to her. The doctor looking after me was absolutely amazing and was concerned about the earache and after looking through my notes contacted the ENT department to get me admitted to the ward. This resulted in another CT Scan which finally revealed that the cholesteatoma was back and I would need an MRI scan to see the damage.

I was finally diagnosed with Epilepsy in September of 2013 and put on medication to try to control the seizures. The MRI scan revealed that the cholesteatoma was not only back but had eaten away and everything that had originally been repaired in the previous surgery and had eaten a hole into my skull causing brain lining to herniate through. 

Could it get any worse?

Yes, I was looking at having to go to Liverpool to have the operation! Luckily there was someone in the princess of Wales hospital ENT department that was able to perform the surgery and took on my case – the amazing Mr Backhouse. In February 2014 he met me at the University of Wales hospital in Cardiff to perform the surgery. After roughly 7 hours he had removed the herniating brain lining, fixed the hole in my skull, removed the cholesteatoma, rebuilt my inner ear and saved my life – he is my very own superhero.

As for the Epilepsy this is something, I’ll have for life now and while my medication has controlled the tonic clonic seizures, I also have complex partial seizures. Medication has been unable to keep the partial seizures under control for good which results in medication increases after each seizure and the medication alone causes its own issues, such as anger, chronic fatigue, memory problems to name some. And due to everything I suffer from depression, panic attacks and crippling anxiety. 

I spent a very long time in a very dark place. Imagine living with a vicious stalker everyday never knowing when it will strike and if you’re lucky you won’t lose conciseness and survive the attack. If you’re lucky you’ll lose conciseness have convulsions and lose control of your bodily functions and eventually wake up. If you’re not lucky it could be the thing that actually kills you.

Living With SUDEP

SUDEP (sudden unexplained death in epilepsy) is terrifying to live with never knowing if you’ll survive the next attack. Imagine how safe you are as an adult in your home now.  Imagine everything becomes a huge danger, for example when bathing there’s a risk of drowning if you have a seizure. Simple things and items such as cooking, knives, stairs, the kettle, they all become a danger. Even outside you’re not safe, but the biggest problem is lack of awareness. It’s so easy to see someone having a seizure and blame alcohol or drugs, it’s so easy to judge and that is frustrating and frightening. 

In 2015 I discovered my uncle had terminal lung cancer, he’s never smoked, I was looking through the window whilst smoking one day and could see him recovering from a chemotherapy session. He knew it wouldn’t make him better but he was fighting for every single day and I wasn’t living my life anymore.

Quitting Smoking

I quit smoking that day, six months later I joined a weight loss group and started to tackle my weight but in January 2016 came my biggest change. The leader of the group suggested signing up for the race for life. I didn’t have to think about it I was in….. the only problem was I couldn’t run! Turns out it wasn’t that I couldn’t run, I just didn’t run. I started a couch to 5k plan but going for a run was like a military operation. My husband needed to know the route I was doing. I had to carry my phone and I could never just get up and go or change my route midway. I had to think of my safety the whole time.

In the April of 2016 I finally plucked up the courage to join a running club. A family member was involved and had nagged me to join once I started running. I was terrified convinced that everyone would laugh at me and I very nearly didn’t get out of the car but knowing that my husband was going to be waiting in the car park the whole time for me I finally got out.

What happened when I got to the group of people? They made me feel welcome, chatted to me and then we all headed out together for a run. I was addicted. I have been a member of this club for almost 3 years. I have had a seizure at club and on a training run with friends. I could have easily been too embarrassed to go back but I have never been made to feel a burden.

Living With Epilepsy

I’m very open about my epilepsy and I don’t think there is anyone who doesn’t know I have epilepsy but I have always been accepted for who I am. I have even become a qualified LIRF for the club, (Leader In Running Fitness) and I’m part of the team that leads our clubs couch to 5k plan known as zero to hero.  I am also qualified athletics coaching assistant for our children’s section of the club, Ogmore phoenix juniors.

Neither of these would I have achieved without the members from the club who I have been lucky enough to attend the courses with. I would never have gone alone. These members have become my friends and the club is a huge family and I am proud to be a member of Ogmore phoenix runners.

I have completed 9 half marathons and take on my biggest challenge in April 2019 –  The London Marathon as part of team epilepsy action. Every race or event absolutely sends my anxiety through the roof but club members, my friends, are always there to help and support me and make me feel safe. When I first joined I was worried about not knowing people but someone told me that nobody in blue is a stranger just a friend you’ve yet to meet, and she was absolutely right.

“Epilepsy has stolen many things from me but it has also given me the gift of running”. I have this tattooed on my arm to always remind me.

My uncle is still fighting strong and loves to hear of my running achievements but my biggest fan was my Nan who sadly passed away in 2017. My very first long run of 9 miles was to visit my Nan. She thought I was bonkers and amazing at the same time. 

She loved my visits after every race where she’d get to see my latest medal and t-shirt and introduced me to people as “this is my granddaughter, the runner of the family”. I miss her so much but she is with me every run I do (her picture is on my running watch) she will be with me in London. I have so many people to thank for being a part of my running journey, mainly my husband who will even ride his bike along the side of me if I’ve had to do long training runs alone. He is my constant support and my rock. 

None of my journey would have been possible or as much fun without the amazing running club I am part of, the awesome Ogmore Phoenix Runners. Thank you for accepting me for who I am and never letting my epilepsy be a hindrance. I am eternally grateful #lovethisclub.”

Thank You Louise

A huge thank you to Louise for sharing her challenging and inspiring story. We hope her words make a difference to other people in Bridgend who are going through similar things right now. We wish Louise all the luck for the London Marathon – we know she will be amazing!

Remember, there are lots of support groups out there for all the challenges that life throws at us. If you need help or advice, search our website via our home page search function for local support.