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London Marathon 2024: Georgi’s story

Georgi

Georgi has lived with epilepsy for as long as she can remember. She has previously fundraised in aid of the Epilepsy Research Institute and this year, her partner George proudly joined #TeamScience for the London Marathon. Here, Georgi shares her perspective on the reality of life with epilepsy and how she’s not let the condition stop her from achieving her dreams. 

I’m not sure how old I was when I first started having seizures, all I know is that they started when my memory did. They would happen during the night, causing me to abruptly wake up feeling stressed and disorientated. Then the drooping of my mouth, tingly tongue and arms, and aggressive shakes would start. Soon after, I would lose consciousness. As I got older, I would try holding my tongue to make it stop or try to keep my shaking arms steady by taking a drink. However, I soon realised that this didn’t stop the seizures, which felt like very horrible but real dreams at the time. I tried to tell my parents about these ‘strange dreams’, but not knowing what they were made it very difficult to explain what was happening to me. So, I carried on having them and I eventually started to think that it was normal.

When I was seven, I went on a holiday with my sister, brother and parents. I always shared a room with my sister on holidays. One morning I had one of my ‘strange dreams’. My sister woke up panicking, thinking that I was choking on one of my colouring crayons that were next to my bed. She screamed for mum and dad who were in the next room. As she was screaming, I tried pulling myself across the room to her, shaking and barely standing as I went. I tried to say “Shhh, it happens all the time! It’s fine!”. But obviously, those words didn’t sound like that when they came out. After that, I had a lot of tests and I was diagnosed with sleep epilepsy a few years later.

I’ve spent the rest of my life since in and out of hospitals. I’ve had all the scans you can imagine. I’ve also had a few emergency hospital visits from bad seizures in the night. When I was diagnosed, I was told it was more than likely juvenile epilepsy and that I’d grow out of it. Sadly, as I got older the seizures got worse. They turned violent, and I would lose consciousness more frequently. I would wake up hearing ringing and screaming. Sometimes I would fall out of bed. Sometimes I was sick. Sometimes I had wet myself. I would have blood shot eyes, bruises, and scratches from myself and the worst headache imaginable. It would take me at least a week to feel normal again.

After I was diagnosed, we first tried making changes to my lifestyle to avoid the possible side effects of anti-seizure medications. This included limiting sugar intake, getting more sleep, not having many sleepovers – all in all having a bubble-wrapped childhood. Unfortunately, none of these worked. The hospital visits became more frequent, as did the silly rubber hammer used on my knees (used to check the reflex arc which involves the sensory nerve, spinal cord and motor nerve). Through all of this, I think I hated that reflex hammer the most.

Eventually, I got put onto 250mg of Levetiracetam, once a day. Over 10 years later, I’m now on 75mg of Lamotrigine and 1000mg of Levetiracetam, twice a day. The seizures have lessened, the control is mostly there, but my worry, stress and anxiety towards what I have will always be there. This and the uncertainty is what I struggle with the most. I feel very lucky though. My lovely parents have always been there. I wouldn’t have the strength I have now if it wasn’t for them. I would wake up after every seizure, in absolute terror and ask them, “Who am I? Where am I? Who are you? I should know you, but I don’t!”. I would sob my heart out and move away. This happened until my memory returned, and I realised, even though I was close, I hadn’t died. They constantly reassured me. They slept next to me, gave me a doorbell next to my bed (in case I was ever able to press it before the seizure fully hit), and so much more. They have been an amazing support system to me. I can’t imagine it’s been easy for them either. Not only seeing their daughter during and after a seizure, but being the ones to have to say ‘no’ to certain activities. This was all because they couldn’t risk a seizure happening.

I also have the most amazing, fantastic, kind and loving boyfriend, George, who has supported me through all of this. He has unfortunately witnessed three seizures in a row. This was within the first year of meeting him. He always double checks that I’m setting my medication alarm (and he sets himself one in case I ever miss mine). If I’m ever twitching or worried in the night, he makes sure that I know he’s there and everything is OK as he knows that I get very anxious. He is so unbelievably kind and caring about what I have. I never thought I’d meet someone who would have such patience and understanding.

George also decided to take on the London Marathon in aid of the Epilepsy Research Institute this year. Epilepsy research has saved so many lives, including mine. If I was still on the same medication, I was on a few years ago, I’m not sure where I’d be right now. I don’t think I’d be living the life I am right now. George is just as passionate as I am about raising money for this vital research to help beat epilepsy. I couldn’t be prouder.

Just because I have epilepsy, it doesn’t mean that I am incapable of doing the things everyone else can do. Every time my condition has pushed me down (and believe me it has), I have always told myself how lucky I am. I passed my exams at school. I lived as normal a teenage life as I could. I was able to pass my driving test and drive. I have my own horse, which I have dreamed of since I was a little girl. I have also qualified to do my dream job as a Registered Veterinary Nurse. The pill taking and the clock watching, the traumatic memories and stress of having this will always stay with me. But I must come to terms with that.

My advice to anyone facing a similar journey is always stay positive and keep fighting because that’s all we can do. You have to live every day like it’s your last, I promise you will benefit from this.

Thank you so much to Georgi for sharing her story and to George for taking on the London Marathon in aid of vital epilepsy research. You can still support his incredible efforts at his fundraising page.

Former Institute Scientific Advisory Committee member Professor Andrew Bagshaw recently discussed the ways in which sleep impacts epilepsy:

“Over the past few years, we’ve used a range of approaches to understand how sleep affects the brain, and how sleep and epilepsy are linked. We’ve had people with and without epilepsy sleeping inside the MRI scanner, with electrodes on their scalp (this isn’t for everyone, but it’s not as bad as it sounds!). We’ve looked at differences in brain structure and function between short and long sleepers, and between early and late sleepers. We’ve also looked at how the relationship between sleep and epilepsy is impacted by traits of autism and ADHD. All these approaches are needed because sleep is complex and multi-faceted. Slowly, they’re enabling a clearer picture of how sleep affects the brain, and what that means for people with epilepsy.”

Read more from Prof Andrew Bagshaw in his Feature article.