In this story shared with us for #EpilepsyDay 2023, Alina Tjannikova from Dublin outlines her journey with epilepsy so far....
It is difficult to say exactly when my journey with epilepsy began, as it took quite a while to get officially diagnosed. I’m 28 years old now and I have “officially” been living with epilepsy for the last 10 years.
I have temporal lobe epilepsy – meaning I can get different types of seizures either several days in a row – or even several times per day.
I mentioned how it took me a long time to get diagnosed and I think part of the reason behind that is the misconception that epilepsy is falling to the ground and having a convulsive seizure – this is the part of the reason that I wanted to tell my story.
It was only when I was officially diagnosed that myself and my mother realised that I’d been having seizures for a long, long time. Looking back on my time in school really highlights this.
When I was in school, teachers always used to tell my mum that I was a great student, but I would daydream too much. I wasn’t daydreaming at all; I was having seizures.
When I became a teenager I will always remember having what I thought then to be an intense déjà vu. I was so scared and though I was losing my mind. When I got home, I ran to my mum to explain to her what happened to me. My mum smiled and said that it is ok, and all people have it, it’s called a deja vu, the moment it seems this thing has already happened to you. However, we now know, it wasn’t just a deja vu, it was a seizure.
When I was 17, I remember standing in the living room and in the next moment I opened my eyes laying down on the bed, with a terrible headache and a little bump on the side of my head. At the time I thought that I slipped on the stairs and hit my head that’s why I didn’t remember going to bed. What had actually happened was that I had my first tonic--clonic seizure and nobody was there to witness it.
My first witnessed seizure happened when I was living in the Netherlands. Several scans followed but no abnormal results were found so I still had no answers.
By the time I came back to Ireland, I was having several different types of seizures per week – ranging from absences to full tonic-clonics. But the medical tests didn’t provide any answers for my seizures.
At that the time of my life my mother was pregnant with my sister. I know it was so hard for her to watch her daughter falling down several times per day and being so vulnerable throughout the seizure. She decided to record me having a seizure. This proved to be a very important decision.
When the medical team had the video ad further details about how my seizures were presenting, along with further tests, I was finally diagnosed with epilepsy.
Weirdly I was happier than ever when I heard the diagnosis. At that point I felt that once I had a diagnosis, everything would become normal again.
What many people reading this will know, and what I now know, is that the diagnosis is just the beginning of the journey.
Until this day, I still have seizures – they’re not as often or as draining as they once were, but they’re still with me. I’ve tried many medications and had the challenges that side-effects from medications can bring.
My team are now looking at whether surgery might be an option for my individual case. It’s scary to hear the words “brain surgery” mentioned and as I write this, I have yet to make a decision – but I will look into all paths in front of me.
Having epilepsy isn’t easy – and it can be frightening for me and my loved ones - but it does not mean for sure that I can’t live a happy life.
As I write this now, I’ve already achieved a lot and have adapted my life to my condition but have not let it define my live.
I hope my story is of comfort to those who may be beginning their journey and helps the public understand more about epilepsy – its so important that people are educated and know more about how to help people with epilepsy on their respective journeys!
Thank you Alina 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!