For National Epilepsy Week 2024, we were sent this piece by Michelle from Galway, which charts her journey with epilepsy...
My name is Michelle, I’m 35 and living in Galway. My experience with epilepsy began in my early twenties. It was the summer of 2011 when I first began to experience unusual sensory changes. I was working away, socialising and nothing felt out of the ordinary until this point!
Suddenly I would get an intense feeling of Deja vu (the feeling of experiencing something before) alongside rising epi-gastric sensations (imagine the feeling of sitting at the top of a rollercoaster and waiting to plunge forward) and an overwhelming sense of “impending doom” and fear.
It was so hard to explain what I was experiencing. These sensations would come and go but they weren’t settling down. I was extremely distressed and anxious at this point and went to my GP.
I was prescribed with a Selective serotonin reuptake inhibitors anti-depressant as my symptoms sounded like panic attacks. I was in disbelief. An anxiety disorder or depression is what they surmised I was suffering with. This diagnosis shocked me - I had the same worries and anxieties as other people, I certainly didn’t consider myself depressed? Or was I?
I continued to take the anti-depressant as directed but my symptoms didn’t improve. I was still experiencing these uncomfortable feelings and sensations every day. And then it happened. My first tonic-clonic seizure (the type of seizure where you lose awareness and experience stiffening and jerking of the body until the seizure has passed).
I had no memory of the seizure afterwards, but I felt like I had run a marathon. I had bit my tongue along the edges during the seizure too. I was frightened. What had happened? What was wrong with me?
I was swiftly referred to neurology for an EEG to scan my brain for abnormal electrical activity. And sure enough, I had Temporal Lobe Epilepsy.
The horrible feelings I was experiencing for a full year before my first visible seizure were “auras” or “Simple Partial Seizures”. They don’t affect my awareness and only affect one part of my brain - the emotional part.
It was finally an answer!! To be honest, I was shook and in disbelief but I was also somehow relieved after the months of worry.
Thankfully, I was lucky and the medication I was put on in the very beginning worked for me (except for when forgetting to take my tablets, the auras would creep back in after a few days).
I also experience auras before I have a full tonic-clonic seizure, they work nearly like a “warning” for me to get to a safe place or alert whoever is with me. Missing my medication is my biggest trigger, I set daily reminders on my phone so I don’t forget.
I try not to let my epilepsy get me down, and thankfully have been seizure free since 2016. I work full-time and I can drive. I wanted other people to hear about my experience, especially with simple partial seizures. I wasn’t aware epilepsy could affect your emotions and feelings. That’s why my GP didn’t recognise it.
It’s important to understand epilepsy and not to let it get in the way of how you want to live your life. My close friends and family know what to do if I have a seizure. Time it, make sure I’m not in danger and to keep me safe, and stay with me until the seizure has stopped. If you have epilepsy and feel like sometimes like you’re alone in your experience, you’re never alone. There are thousands like you and we all face it together.
Thank you Michelle for sharing your story to help raise awareness of epilepsy and to help support others in the epilepsy community!