In this story shared with us for #EpilepsyDay 2023, Rachel Wall from Wexford outlines her journey with epilepsy so far....
My epilepsy journey started when I was 14, in the Summer of 2010.
One minute everything in life was normal and next thing I couldn’t remember what happened. I thought I had fallen asleep (which is unusual for me), but in reality, I had just had my first absence seizure.
Both my grandparents were looking at me in shock and were puzzled as to what happened. They thought I was joking and messing around but two days later, it happened again, and they discussed it with my parents.
My absent spells would happen for couple of seconds where I would just ask a series of questions and then I was back to my normal self. It was confusing as to what was happening and we weren’t sure what to do but we decided to wait and see if it would stop. Then one day, my Mam got a call from the school.
I was after having another absent spell. It was really embarrassing, especially at that age as everyone was looking and didn’t really know what to say or do for you.
We knew at this point we needed medical help, so we contacted our GP. This was the first time I heard the word epilepsy mentioned, which was actually a relieve to me as it felt like we were beginning to get answers. But the GP couldn’t confirm this, and I had to be referred on for a consultation with a neurologist.
Unfortunately, the tests at this time didn’t lead to any answers and epilepsy wasn’t diagnosed at this point. It was difficult hearing that as I felt I knew it was something more. These episodes continued to happen occasionally, but you have to trust the experts and get on with life – which I did.
However, the following year turned out to be one of the most difficult in my life and is where my epilepsy became much more obvious and clearer. It was an extremely stressful time. My aunt passed away suddenly due to Sudden Adult Death Syndrome and at the same time, we found out that my Grandad had terminal cancer. He passed away just three months after we lost our aunt. At the same time, my Junior Cert was coming up and then I found out I was a carrier of the gene for Sudden Adult Death Syndrome that had taken my aunt.
It was a very difficult time for someone so young and throughout all of it, my absent spells became more frequent. Before he passed, my Grandad had told my parents to find out more about what was going on with me and to try and get answers. My Mum & Dad kept their word.
I went through the diagnostic journey again to get a second opinion, and this time I officially received a diagnosis. It was actually a relief to finally know what was happening and that I was having seizures.
As many reading this will know, starting medication for epilepsy is hard. I was constantly tired due to the side-effects, but I’ll always remember how supportive everyone was at home and school – and that kept me going.
I thought I was getting used to and on top of my life with epilepsy, but that all changed in 2014 when I had my first tonic-clonic seizure. One minute I was in class and the next I was on the floor, totally confused as to what had happened. Anyone reading this who has experienced it, knows the feeling – utter confusion, upset, embarrassment and fear.
An ambulance was called, and Mam rushed to the school. It was decided that my medication would need to be upped and we hoped this “new” type of seizure was a once off. Unfortunately, we were wrong.
It was 2016 when I had a second tonic-clonic seizure and that one was probably the worst I’ve ever had. Luckily my sister was nearby, and rang for an ambulance but the one problem. I had all the same feelings as the last seizure but this time I had severe chest pains.
After seeing my neurologist again, it was decided that there would be further investigations regarding what was causing my epilepsy – and specifically looking at a potential genetic cause.
My seizures were discussed; previous family illnesses were discussed and Mam & Dad also had to have tests. Again, the answers this yielded came as a relieve it was discovered that I have a very rare, genetic type of epilepsy. Apparently, I’m only one of a handful of people with this type of epilepsy in Ireland!
I had gotten my answers and I decided from that point that I wouldn’t let my epilepsy define me as a person. I have followed treatment plans and got to know my epilepsy as I’ve progressed through life and I’m pleased to say that I’m seizure free since August! I’ve completed my degree and am in full-time employment – and I hope to begin driving in the Summer.
I suppose the key message I want to share as part of my piece is for others living with the condition – try and keep staying positive; keep seeking out answers and don’t let epilepsy stop you from achieving what you want to achieve.
Thank you for reading and to the public I would say, please learn more about epilepsy for International Epilepsy Day!
Thank you Rachel for sharing your story and helping to create awareness of epilepsy and increasing understanding. For everyone reading, you can learn more about epilepsy by visiting the 'Epilepsy Information' section of our website - and please ensure you make Time, Safe, Stay part of your general knowledge as part of #EpilepsyDay 2023! Visit the 'International Epilepsy Day 2023' section of our website to do just that!