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How Kinross-shire mum Kate’s epileptic seizures stopped after ‘life-changing’ surgery

The 53-year-old has been living with epilepsy and a brain tumour for nearly 30 years.

Kinross-shire mum Kate has epilepsy but is now seizure free after an operation on her brain tumour.
Kinross-shire mum Kate has had no epileptic seizures since having a life-changing operation in May. Image: Kim Cessford / DC Thomson

When Kinross-shire mum Kate Willingale was living in Italy at the age of 26 she had a epileptic seizure which ended up changing the course of her life.

It was 1997 and she had been staying in Genoa teaching English to staff in Italian businesses.

But one night her ex-husband woke up to find Kate having a seizure.

And after having some tests done, it was discovered she had a brain tumour.

“My then husband woke up during the night to discover I had bitten my tongue and my hands were clenched together tightly like fists,” she explains.

“He called the paramedics and I was taken to hospital.

“They did an MRI which confirmed I had a tumour on the right temporal lobe.”

Kate, from Kinross-shire, has been living with a brain tumour and epilepsy for the past 27 years.
Kate, from Kinross-shire, has been living with a brain tumour and epilepsy for the past 27 years. Image: Kim Cessford / DC Thomson

Kate decided it was best for her to return home to Scotland to see a neurologist.

The neurologist then explained that her tumour had triggered epilepsy – resulting in her seizures.

The mum-of-one, from Cleish, continued having epileptic seizures over the next two decades.

But it was only when they started worsening in recent years that medics decided to operate.

Incredibly, surgeons were able to ‘shave off’ the bit of the tumour causing the seizures.

So now, for the first time in years, Kate is seizure-free.

When did Kinross-shire Kate’s first show signs of having epilepsy?

When Kate was 25 she remembers starting to experience ‘absent seizures’.

“I had been living in Italy for about four years when I started having what I now know to be absent seizures.

Kate pictured in Italy when she started having epileptic seizures.
Kate pictured in Italy when she started having epileptic seizures. Image: Kate Willingale.

“This meant I would click out for a few minutes and not be able to speak, but I would still be aware of what was going on around me.

“I was teaching English in my classes when suddenly I would go into one of these moments.

“They would happen maybe a couple of times a month or so but I just put them down to tiredness.”

But then she had what she describes as a ‘full-blown seizure’ one night and was taken to hospital.

And after scans showed she had a brain tumour, Kate and her family decided it would be best for her to return home to see a specialist.

Being diagnosed with epilepsy

Back in Scotland, Kate saw a neurologist at the Western General Hospital in Edinburgh.

“The neurologist told me the brain tumour wasn’t malignant.

“He said I had probably had it since birth.

“More tests were then carried out along with scans and an EEG. An electroencephalogram, or EEG, is a recording of brain activity.

“And from the results, I was told I also had epilepsy.

“When I was told in Italy that I had a brain tumour I was very drugged up on medication so it didn’t really hit me until I got home.

“Then I found out I had epilepsy.

“To be perfectly honest I was gutted when I learned this.

“It was a very upsetting time and my whole family were shocked.”

What type of epileptic seizures did Kate have?

There are many types of epilepsy seizures.

The ones Kate experienced were: ‘absence, focal and atonic seizures’.

Absence seizures cause the person to lose awareness of their surroundings, usually for up to 15 seconds.

Initially this was the type of seizure Kate had.

“When I was pregnant with my daughter Emily in 2001 I was very lucky because I didn’t seizure a lot.

“If I did have them they were absent seizures so it wasn’t too much of a hassle.”

But then 14 years ago Kate started having ‘focal impaired awareness seizures’.

“Focal unaware seizures mean you can be walking about and talking to people but you have no awareness of it,” Kate explains.

“My daughter has told me that I have been into restaurant kitchens trying to talk to people!

“And one day when I was working in the office at Heaven Scent coffee shop [in Milnathort] my boss found me under her desk.

“She asked me if I was ok and I said: ‘yeah I am just looking for my marbles’.

“She thought I was having a laugh until she realised I was in a seizure.

“But I have no recollection of these things whatsoever.”

What happens during an atonic seizure?

The last type of seizure Kate experienced was an ‘atonic seizure’.

This causes all your muscles to relax suddenly.

And there’s a chance you may fall to the ground and injure yourself.

Kate Willingale. Image: Kim Cessford / DC Thomson

She started experiencing these seizures over the last ten years.

“I just fall and it’s normally backwards – although not always.

“I have broken ribs before during one of these seizures. Once I fell into a butcher’s cabinet in the kitchen.

“I managed to knock it off its wheels and ended up inside. But I wasn’t aware of what had happened.

“Then I need a lot of sleep to catch up.”

Family support for the Kinross-shire mum

Kate has had a lot of support from her family, particularly her mum and dad.

“Emily and I have lived on and off with my mum and dad throughout Emily’s life.

“We moved in with them permanently in 2018 because my epilepsy got so bad that I was risking hurting myself.

“But Emily and my mum and dad have been my rock over the last 27 years.

Kate with her daughter Emily.
Kate with her daughter Emily. Image: Kate Willingale

“I have a brilliant family who have always been there for me. I am very lucky.”

A life-changing operation

Kate’s seizures have become worse over the past two or three years, resulting in her collapsing twice a week.

So she became a candidate for an operation which could prove to be life-changing – if successful.

“In 2022 I went into hospital for tests and had my epilepsy medication reduced so I would seizure.

 Kate pictured in hospital for tests before she had an operation to stop her epileptic seizures.
Kate pictured in hospital for tests before the operation. Image: Kate Willingale.

“The electrical activity in my brain was then monitored so they could pinpoint exactly where in the tumour the seizures were coming from.

“The tumour is embedded in my brain so can’t be completely removed.

“So what they were going to do was shave away that part of my tumour causing the seizures.

“What the surgeon did was absolutely amazing.”

Ahead of the surgery, Kate had her head shaved and raised £433 for Epilepsy Scotland in the process.

She then had the operation in May this year at the Royal Edinburgh Hospital.

 Kate pictured after the operation to stop her epileptic seizures.
Kate pictured after the operation to stop her epileptic seizures. Image: Kate Willingale.

“Afterwards I slept non-stop for the first four or five days.

“But the surgeon said he was very happy with how it went. Since then, I have had no seizures.”

Becoming free from epileptic seizures

Kate is still on a high dose of medication which won’t be reduced until next year.

Then she will be able to find out for definite if her seizures have stopped for good.

“I still have to nap through the day because the medication just knocks me out.

“But at the moment I am just enjoying being seizure-free. It has been life-changing.”

Now Kate is looking ahead to the future.

“I am waiting to see if I stay seizure free for a year so I can get my driving licence back.

“Also I haven’t been able to work because I don’t have the energy, but once I am on less medication I would love to work again.”

She adds: “I am always positive so however my journey is going to be and however it is going to end up, I just think take life in both hands and give it a run.”

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