Model, 24, cries as she reveals the reality of her ‘invisible’ epileptic seizures on Instagram
- Sophie Wilson-Smith, 24, has focal seizures which can be unnoticeable to others
- The London student often stares into space but ‘is freaking out inside’
- It took over a year to diagnose her with epilepsy after a seizure at work
A model uploaded a live video of herself having a seizure to Instagram to show the reality of epilepsy.
Sophie Wilson-Smith, 24, of north London, sheds tears as she explains how scary her seizures – which can be unnoticeable to others – are.
The masters degree student said: ‘I would never usually post this but I’ve had enough. This is what a simple partial seizure looks like.
‘Sometimes it looks like nothing or that I’m staring into space. Sometimes it looks like I’m full on convulsions [sic].’
Ms Wilson-Smith, 24, uploaded a live video of herself having a seizure to Instagram to show the reality of epilepsy
The 24-year-old model and student from London explains how scary her seizures, which can be unnoticeable to others, are
Ms Wilson-Smith had no idea she had the condition until she suffered a terrifying episode while at work in April 2017.
A barrage of tests followed until the summer of 2018, when she was officially diagnosed with epilepsy – a neurological condition causing seizures, due to a sudden burst of intense electrical activity in the brain.
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She said: ‘The video was like a therapy for me, a way of educating others on the mental aspect of having to deal with this.
‘Lots of people don’t realise there are different types of seizure. It’s not always the typical fit you see on TV, where a person is on the ground shaking.’
Ms Wilson-Smith experiences focal seizures, which starts in one side of the brain. You can still be aware of your surroundings.
‘The ones I experience are almost unnoticeable, yet I’ll be freaking out inside. It can make you feel very alone.
‘It usually only lasts a few seconds to a couple of minutes. But it makes my heart feel like it’s beating out of my chest and I feel unaware of my surroundings when it’s happening.
‘Sometimes the left side of my body does that [shake] and I really struggle to get my words out… so it’s quite normal for me to get upset afterwards.’
‘The ones I experience are almost unnoticeable, yet I’ll be freaking out inside. It can make you feel very alone’, Ms Wilson-Smith said about her epileptic focal seizures
Ms Wilson-Smith, who is studying to be a vet, first experienced a seizure at her work in April 2017, and was diagnosed over a year later with epilepsy
Until her first seizure, Ms Wilson-Smith, who is studying Veterinary Epidemiology and Public Health, was a healthy individual juggling modelling, a part-time retail job, and studying for her university zoology degree.
Remembering the day in April 2017 she said: ‘My memory of it is very hazy, but I can only describe the symptoms as being migraine-like, just without the headache.
‘I said to my friend, “I really don’t feel well. Something is wrong.” Apparently, as I spoke, I just went completely blank.
WHAT IS A FOCAL SEIZURE?
A focal onset seizure, in an epileptic seizure that starts in one side of the brain. Until recently these seizures were called partial seizures.
There are two types:
- A focal aware seizure: You stay fully aware of what’s happening around you. This type of seizure used to be called a simple partial seizure.
- Focal impaired awareness seizure: If your awareness of what’s happening around you is affected at any time. This type of seizure used to be called a complex partial seizure.
What happens to you during a focal seizure depends on which part of the brain the seizure happens in.
This is because different areas of the brain control movements, body functions, feelings and reactions.
Some people experience just one symptom during a focal seizure, while others experience several.
Symptoms of focal seizures can be split into two groups:
- Motor symptoms: Examples include part of your body, for example one arm, going stiff, part of your body going limp or ‘floppy’, rhythmic jerking in part of your body, the head and eyes turning to one side, lip smacking, repeated swallowing or chewing, undressing, running or walking.
- Unmotor symptoms: Examples include feelings of being hot or cold, fear, anxiety, anger or pleasure, changes to vision, hearing, smell or taste, hallucinations, feeling like your body is distorted or missing, changes to breathing, heart-rate or skin tone or difficulty processing language
Focal seizures mostly last between a few seconds and two minutes.
Some people are able to continue what they are doing afterwards, but some people may need to sleep or feel weak.
Source: Epilepsy Action
‘Next thing I knew, I was surrounded by paramedics.’
After being checked over at hospital, Ms Wilson-Smith was initially told she had probably had a hemiplegic migraine, where one side of the body becomes temporarily paralysed.
But in the throes of a focal seizure, a person may also experience speech difficulties, vision problems or confusion.
Ms Wilson-Smith continued: ‘I didn’t fit the typical epilepsy symptoms, so it took a long time to be properly diagnosed, but the medication I was given didn’t help me.
‘Over the course of a year, I was having more and more focal seizures.
‘Doctors were convinced they were hemiplegic migraines, but I didn’t agree. It was incredibly frustrating, and I ended up feeling down and depressed.
‘Life was changing so much for me, and yet nobody seemed to understand.’
Ms Wilson-Smith was having around five seizures a month and could feel symptoms building up for days on end before they happened.
Describing the onset of a seizure, she said: ‘I’ll feel this uncomfortable, almost anxious feeling in my stomach, before the room gets bigger and smaller. My vision will feel odd, and my hearing is as if someone has their hands over my ears.
‘Afterwards, I’ll feel really disorientated and upset.’
Ms Wilson-Smith began to dread going out in case one happened in public, worried that people will judge her if she has an episode in public.
She said: ‘I remember being on the Tube in London once when I felt a seizure coming. I explained what was happening and asked for a seat and this person just started at me, without moving.
‘I ended up having one standing up, and on that packed carriage, only one person asked if I was okay.’
At the end of 2017, Ms Wilson-Smith was forced to quit her retail job, as the stress of juggling everything was making her symptoms worse.
Finally, in summer 2018, she met with a specialist at Addenbrooke’s Hospital in Cambridge, where she was officially diagnosed with epilepsy.
‘I’d come to terms with the fact that something more than originally thought was wrong with me’, she said.
‘While it wasn’t nice to hear, it was a relief to finally have a diagnosis.
‘My specialist was amazing. He put me on a course of medicine right away, which took a couple of weeks to kick in, but has been great.
‘It’s a long road to see if this will be a long-term solution, and I’ve had to up my dosage twice, but I feel very grateful for now.
‘Before, the tiniest bit of stress, tiredness or even being on my period would trigger me – but now, my episodes are few and far between.’
Ms Wilson-Smith, who is now working with the charity Epilepsy Action, decided to film the video for Instagram around three months ago, before her medication was kicking in.
Although nervous as to how people would react, she was hit with a wave of support, receiving messages off strangers from around the globe.
Now, by speaking out, she hopes she will educate people on the invisible side of epilepsy – and show others living with it that they are not alone.
She said: ‘Of course, everyone is different, but personally, when I’m in a seizure, I need people to remain calm, sit with me and wait, helping me come back down.
‘There’s nothing worse than someone panicking, shouting and shaking you.
‘Everyone should inform themselves about epilepsy, as it can happen to absolutely anybody. It just hit me out of the blue, and we’re all still trying to work out why.
‘What people like me need is as much kindness and understanding as possible. Judgement doesn’t help anybody.
‘To others with epilepsy, I want to also say how important it is to speak up if you don’t feel well. You may feel afraid or worry about being a burden but you aren’t – and your health is so important.’
Over 500,000 people in the UK, about one in every 100, have epilepsy, according to Epilepsy Action.
One in 50 people will have epilepsy at some time in their life (not everyone with epilepsy will have it for life), and there are over 40 different types of seizures.
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