WHEN Deborah Leigh’s daughter was diagnosed with a rare condition causing seizures, she claims doctors told her it wouldn’t prove fatal.
Yet, two years later, the devastated mum found her 25-year-old child, Helen, lifeless on the floor of her home.
Helen Leigh, pictured, was 25 when she died in May 2018 after an epileptic seizure
Helen’s mum Deborah, pictured next to her daughter, was livid when a Helen’s neurologist wrote to her saying: ‘In retrospect, Helen probably had both epileptic and NEAD seizures’
After a desperate attempt to perform CPR, Helen died.
The phlebotomist from Rotherham, South Yorkshire, had suffered her first seizure in March 2013, leading doctors to diagnose her with epilepsy in November the following year.
But, after suffering three seizures in September 2015, mum Deborah said Helen’s diagnosis was changed from epilepsy to non-epileptic attack disorder (NEAD).
Deborah claims that doctors told her at the time that her daughter could not die of NEAD.
Now she wants to raise awareness about the little-known condition.
Deborah said: “Not once before Helen died were we told that you can have both epilepsy and NEAD.
But Helen’s neurologist wrote to her family after her death in May 2018, saying: ‘In retrospect, Helen probably had both epileptic and NEAD seizures.’
“Well, you can imagine how that went down,” Deborah said.
“I was so angry – and still am.”
“I think Helen’s death was avoidable.”
She added: “Had we known this, we would have been able to have different conversations with those treating her, which could have meant further investigations and tests, and resulted in her receiving the correct treatment.”
After receiving her epilepsy diagnosis in 2014, Helen was prescribed anti-epilepsy drugs.
Deborah said: “The medication seemed to work and she went eight months without a seizure.
“Then her medication was changed and she had every side effect going.”
Helen was then again prescribed her old medication, but it was titrated. This means that medication is started at a low dose and upped every few weeks until an effective dosage is reached or side effects occur.
Doctors gave Helen a lower dosage of the medicine to see how it affected her seizures, mum Deborah said.
But on Deborah’s birthday in September 2015, Helen had three seizures.
Deborah filmed one of them to show the neurology team.
The video led the team to re-evaluate Helen’s diagnosis, from epilepsy to NEAD.
According to Epilepsy Action, NEAD attacks are “dissociative seizures” which are “not caused by abnormal electrical activity in the brain”.
The charity says: “Instead, it’s thought they are a physical reaction to distressing triggers such as sensations, thoughts, emotions and difficult situations.
“Some experts say dissociative seizures are the brain’s way of ‘shutting down’ to protect itself from overwhelming distress.
“Some dissociative seizures look very similar to epileptic seizures, whilst others look more like fainting.”
About one in every five people referred to hospital for seizures are diagnosed with dissociative seizures, the charity wrote.
Deborah said she had never heard of the condition but claimed she was told by doctors that people cannot die from it.
The main treatment for dissociative seizures is psychological therapy, also called talking therapy, according to Epilepsy Action.
As a result, Deborah said Helen was taken off medication despite still suffering seizures once or twice a month.
What is non-epileptic attack disorder (NEAD)?
Some seizures people experience don’t seem to have a physical cause, mental health charity Mind says.
People with dissociative disorders can have them – they’re called dissociative seizures or non-epileptic attacks.
They may be caused by the brain dealing with overwhelming stress by ‘shutting down’.
If you have a dissociative seizure you may:
Have convulsions of the arms, legs, head or body (on one side or affecting the whole body)
Lose control of your bladder or bowels
Bite your tongue
Go blank or stare in an unseeing way
Have other symptoms that look like epilepsy
You might be diagnosed with NEAD if you experience these.
Meanwhile, people with epilepsy suffer seizures due to bursts of electrical activity in the brain that temporarily affect how it works.
Possible symptoms include:
uncontrollable jerking and shaking, called a “fit”
losing awareness and staring blankly into space
becoming stiff
strange sensations, such as a “rising” feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs
collapsing
Sometimes you might pass out and not remember what happened.
“She had all the typical signs of epileptic seizures such as loss of consciousness, biting her tongue, no memory of her seizures, and seizures while sleeping.
“The frequency and severity of her seizures were increasing over time, and this was reported to the neurologist who repeated that Helen did not have epilepsy,” Deborah said.
Helen moved closer to her parents, with her best friend just four doors away to check on her.
She was on FaceTime with her boyfriend Nico when she had a fatal seizure in May 2018.
Nico became concerned when Helen disappeared from the screen and called Deborah.
“When I got the call from Nico I thought, ‘here we go again’,” Deborah recalled.
“But as I got to her street and was parking the car I could hear her best friend screaming, telling me to get in there quickly.
“Helen was on the floor and I knew straight away she was dead.
“We tried CPR before the paramedics arrived, but they got no response.”
Helen was just 25 when she died.
Deborah said: “She was so very independent and the day she died she’d just got the car she’d always wanted and found out she’d been offered a job as a phlebotomist for a private practice.”
Deborah settled a clinical negligence claim with the hospital Helen was treated at in September last year, in which the trust did not accept liability.
She said she regrets not getting a second opinion about her daughter’s condition.
A medical director at the hospital said: “Helen had several investigations during her care and treatment decisions were based on these and other information provided to the clinical team.
“Changes to her care were only made after discussion with Helen and careful consideration by specialists in seizure disorders.
“Helen’s family are understandably devastated by her loss, and we have offered to have a meeting at any point they feel is appropriate to answer any further questions they may have.”
Miriam Bi, solicitor at Medical Solicitors who represented the family said: “There was no inquest following Helen’s death because the post-mortem report was clear about the cause of death being Aspiration Pneumonitis and Idiopathic Epilepsy.
“The post mortem report concluded that Helen had “suffered from non-epileptic attack disorder along with migraine, dyslexia and hypothyroidism.
“The condition which led to her seizures is considered to be a psychiatric condition which is managed and treated in a different manner to that of traditional epilepsy. It is a condition which is considered to be not typically associated with aspiration and unexpected death.”