Kirsti is living with agonising invisible pain

SUFFERING: Kirsti Leeder is promoting TN Awareness Day today to raise awareness of the disorder.
SUFFERING: Kirsti Leeder is promoting TN Awareness Day today to raise awareness of the disorder.
Share this article

For 17 years, Kirsti Leeder has had to live with an excruciating invisible pain in her face.

It can be brought on by a cold breeze, brushing her teeth or merely talking, and often leaves the mother-of-two in agony for hours on end.

To make things worse, the condition is little-known, with diagnosis difficult and treatment still evolving.

Kirsti, who lives in Elm Road, Sudbury, has trigeminal neuralgia (TN) – a facial pain disorder believed to be caused by the trigeminal nerve fusing to an artery.

For Kirsti, who works as an admin assistant at Wells Hall Primary School in Great Cornard, the battle against the condition began 17 years ago.

“It was a very frightening time and was just before I had my eldest daughter,” said the 44-year-old.

“It was like I was having toothache or brain freeze from an ice-cream, but it was a million times worse. I went to the dentist but they could not find anything wrong.”

Years later, Kirsti would discover that a trip to the dentist, in an effort to find the root of the pain, was a path followed by many fellow sufferers before diagnosis. In fact, many with TN have extensive dental work in a bid to try to ease the torment they are experiencing.

It was not until a visit to a chiropractor, following a fall, that she got to the bottom of the problem.

“I fell down the stairs when I was carrying my six-week-old baby,” she said.

“Obviously my main priority was to protect my baby and I put my neck out of line. I had to go to a chiropractor, who went through my entire medical history.

“I told him about the pain and at the last session he said ‘I know what is wrong, you have TN’.

“I just looked at him and said ‘what?’”

Kirsti was sent to see her GP and prescribed epilepsy drugs as, at the time, it was thought to be the best way of dealing with the pain.

After doing some research on the internet and reading up on the condition, she admits to having been terrified about what lay in store.

She continued to take the drugs, but eventually the cycle of misery brought on by the pain became too much.

“A few years later, I was really suffering, so I went to see the doctor,” explained Kirsti.

“He asked if I had had an MRI scan or been to a neurosurgeon, the answer to both was no. I went to the neuroscience department at Addenbrooke’s Hospital and in early 2000 I was told I needed an operation.”

The operation would have meant spending 10 days in hospital, five in intensive care. But, with a chance she would not survive the surgery and with two daughters, aged four and one, at home, Kirsti decided she could not face the risk.

“I just could not do it,” she said. “I could not leave my children.”

For the best part of a decade, she struggled on with normal life as best she could, caring for her children, Shannen and Jasmine, and going to work.

Finally, just before Easter in 2009, she underwent brain surgery.

But not everything was straight forward.

“It happened so quick, I had the operation and was out in five days,” she said. “But then I had a leak on the brain and it was five weeks before I could get back home.”

Despite a successful surgery on the right side of her face, the suffering was not over.

In extreme circumstances, those with TN can have it on both sides and Kirsti was one of those unfortunate few.

She was taking a cocktail of drugs – epilepsy medication, drugs for depression and regular doses of morphine – every day.

“I was away with the fairies completely,” she said.

In June last year, she underwent brain surgery for a second time, on the left side, and says the improvement has been dramatic.

“I am probably as pain free as I will ever be, but I don’t think I will ever be rid of it,” said Kirsti.

“I have had no quality of life for so many years and the children have been affected, too.

“They have had to grow up quickly, because there have been times when I have been screaming on the sofa in pain.

“When it snowed, I could not take them outside to play, as the cold would trigger my TN, and it can take something as little as a cool breeze, chewing food or washing my face to start it off.

“They have had to put up with what was going on.”

She says the need to keep going came from the focus of being a mum to her daughters. She also praised the “fantastic” support she has received from Wells Hall.

With her pain more stable than ever before, she is turning her attentions to raising awareness of the condition, which is often known as the “suicide disease”.

“It is called that because some people reach a stage where they just cannot go on with the pain,” she said.

“It is like an invisible illness.”

On October 7, the first International Trigeminal Neuralgia Awareness Day is taking place, with famous landmarks around the globe being lit up in the colour teal.

The aim is to get the World Health Organisation to put TN on its health topics list, so more research and funding can be put towards the condition.

For her part, Kirsti is selling teal ribbons and will be sending the donations received to The Facial Pain Association.

“There is no publicity for TN and there is an ignorance,” she said.

“There could be an awful lot more people who suffer from it, but it is just so hard to diagnose. I am medication free at the moment, but I do not think it will last, and I do not even know what triggered the condition in the first place.

“I have never kept it a secret and people need to know about it.”

On Monday, she plans to enjoy a meal with some friends and reflect on the difficulties she has come through in the last two decades.

“I will light some candles and spend some time thinking about the condition, although it is never far from my mind,” she said.

“It will be nice to know more people are aware of it.”

n To contact Kirsti for a teal ribbon, call 07407 034407.