Epilepsy – Issa Yannakis
Issa Yannakis is a third year BA illustration student at Falmouth University. As part of their work for their final exams, they created an artwork that reflects their personal experience of epilepsy. Here they talk about their piece and the impact of living with epilepsy on both them and their family.
The triptych that I have made represents coming out of a seizure. I used my self-portrait, printed off multiple copies, cut them up, and randomly stuck them back together. This represents fractured reality after a seizure. I also exaggerated this by drawing cracks similar to those on broken glass. Vision, sound, colour, and movement are restricted and momentarily displaced.
An example of distorted vision is areas of blurriness where my eyes are. I used faded kaleidoscope colours and smudged them in the eye areas, representing how colour appears post seizure (similar to an aura). The static is visual and auditory because hearing is also displaced, and my vision is black at first as if coming out of a tunnel.
Epilepsy – Issa Yannakis
Living with epilepsy
Since having my first Tonic Clonic seizure in 2018 I can honestly say my life has changed. After my first one I was seizure free for three years and three months, and during this time I think I almost convinced myself that it was a one-off event and would never happen again. My family also ‘bought into’ this and so we were all quite shocked when I had my second seizure in July 2021.
Throughout this period, I had not yet been diagnosed with epilepsy because after the second seizure I ‘slipped through the net’ with the NHS and was forgotten about. After a first seizure extensive tests are not done due to it possibly being a ‘one-off’ event as previously mentioned. I did undergo an MRI brain scan which came back as uneventful thankfully. I was found on admission to A&E, to be almost completely depleted in the mineral phosphate so needed to have this intravenously replenished.
In March 2022 I was finally referred to Kings College Hospital to have a 24-hour EEG (electro-encephalogram), which is a recording of brain activity. In April 2022 I received a diagnosis of Generalised Idiopathic Epilepsy. I was told I had lots of abnormal and frequent bursts of brain activity. I was quickly prescribed Lamotrigine at a low dose and instructed to increase this at specific intervals so my body could adjust to the medication. The medication caused some skin irritation but was generally well received. I have experienced brain fog and forgetfulness, and we have wondered whether this is due to the medication or my epilepsy. I really believed that there would now be no more seizures and that I could relax and get on with my life. My family believed this too.
In May 2023 I had my third Tonic-Clonic seizure and this was so unexpected because I was now on medication and believed I was regulated. The day of the seizure I had an online therapy session and engaged in EMDR (Eye Movement Desensitization and Reprogressing) for childhood trauma. This was extremely challenging because I became very tired and ‘heavy’ as the session progressed. After, I took a nap but felt ‘out of it’ all day. At 11pm I had a seizure. I believe that the tapping from the bi-lateral brain excitability that day contributed to it. I will never again engage with EMDR. After this, my Lamotrigine was increased again.
In July 2024 I had my fourth Tonic Clonic seizure. I was away from home with my family but alone in our accommodation at the time. I found this extremely distressing due to being in a strange and unfamiliar environment alone. Finally, I think it has sunk in that the epilepsy is not going away and that I will have to manage it for the rest of my life. I can say with certainty that it has immensely reduced my self confidence especially around going out and feeling safe. My mother, who has been with me for every Tonic Clonic seizure except the last one, experiences PTSD due to the stress of seeing me during the seizures and initially not knowing what to do. So whenever my family hear a loud noise they always call out to me to see what it is incase I am having a seizure.
I have also had other mini episodes of questionable seizures that are not Tonic Clonic, and which my neurologist says may be fainting episodes. These are to be investigated further.
I do feel isolated with my epilepsy and would like to join a support group. I would also like to eventually be able to turn this diagnosis into a positive somehow.
Contact our Helpline
If you are affected by epilepsy and need support at this time, or any time of the year, our Helpline is there for you. It’s confidential, providing information and emotional support.
Our Helpline will be open until 4pm on 24th and 31st December and closed for the bank/public holidays. More details about our Helpline and how to connect with us by phone, live chat or email can be found here
If you need to talk to someone when our Helpline is closed you can call the Samaritans on 116 123. The Samaritans also offer tips if you’re feeling lonely and how to recognise and support someone who may be lonely . Or you might like to join in with online conversations on our Facebook page, X page or our Instagram page.