Model bravely shares video of a seizure on Instagram to show the reality of living with epilepsy
Masters degree student Sophie Wilson-Smith shared the video on Instagram, which shows her shaking and disorientated.
The 24-year-old, from north London, had no idea she even had the condition until April 2017 when she suffered a terrifying episode while at her retail job.
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.
Keen to show how varied seizures can be, Sophie, who is studying veterinary epidemiology and public health at London School of Hygiene and Tropical Medicine and the Royal Veterinary College, posted candid footage online.
The clip shows Sophie having a focal seizure – she is conscious and aware, but disorientated.
“The video was like a therapy for me, a way of educating others on the mental aspect of having to deal with this,” she said.
“Lots of people don’t realise there are different types of seizures. It’s not always the typical fit you see on TV, where a person is on the ground shaking.
“The ones I experience are almost unnoticeable, yet I’ll be freaking out inside. It can make you feel very alone.”
Until her first seizure, Sophie, who has a zoology degree from Anglia Ruskin University, was the picture of health juggling modelling with a part-time retail job and studying for her exams.
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’.
FIND OUT MORE What is epilepsy, what medication is available, what are the symptoms?
“Apparently, as I spoke, I just went completely blank. Next thing I knew, I was surrounded by paramedics.”
After being checked over at hospital, Sophie was initially told she had probably had a hemiplegic migraine, which causes one side of the body becomes temporarily paralysed.
In the throes of a focal seizure, a person may also experience speech difficulties, vision problems or confusion.
“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,” she said.
“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.”
At her lowest, Sophie was having around five seizures a month and could feel symptoms building up for days on end before they happened.
“I’ll feel this uncomfortable, almost anxious feeling in my stomach, before the room gets bigger and smaller,” she explained.
“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.”
Eventually, Sophie even began to dread going out in case one happened in public.
“It’s something I still struggle with now. I worry people will stare and judge if I have an episode in public,” she added.
“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, Sophie 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,” said Sophie, who is now working with the charity Epilepsy Action.
“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.”
THE SIGNS YOU MAY HAVE EPILEPSY
Epilepsy is a condition of the brain which can disrupt the electrical communication between neurons in the nervous system.
This often leads to seizures, a sudden event that can change a person’s awareness, behaviour or feeling.
The condition is typically diagnosed when a person has two or more unprovoked fits separated by at least 24 hours.
Epilepsy can begin at any age, but it tends to affect people either in early childhood or who are older than 60.
There are many different symptoms of seizures, depending on the type and severity.
The main symptoms of partial seizures include:
- a general strange feeling that is hard to describe
- a "rising" feeling in your tummy – sometimes likened to the sensation in your stomach when on a fairground ride
- an intense feeling that events have happened before (déjà vu)
- experiencing an unusual smell or taste
- a tingling sensation, or "pins and needles", in your arms and legs
- a sudden intense feeling of fear or joy
- stiffness or twitching in part of the body, such as an arm or hand
Complex partial seizures are also signs of epilepsy, as they cause your sense of awareness and memory to become distorted.
- smacking your lips
- rubbing your hands
- making random noises
- moving your arms around
- picking at clothes
- fiddling with objects
- adopting an unusual posture
- chewing or swallowing
There are several treatments for epilepsy available.
If you're concerned you have the condition, or your fits are changing or getting worse, speak to a GP.
During a seizure around three months ago, as her medication was still kicking in, Sophie made the bold decision to film what was happening.
Although nervous about how people would react, she received a wave of support and messages from strangers around the world.
She hopes the video will raise awareness of the invisible effects of epilepsy – and show others living with it that they aren’t alone.
“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,” she said.
“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.
“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.”
For information, visit www.epilepsy.org.uk
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