A MUM has spoken of her battle with an incurable neurological condition that sees her suffer up to 200 ‘electric shocks’ every day.

Nikki MacKenzie, 37, told the Telegraph how she lives with a ‘lightning storm of pain’ caused by Trigeminal Neuralgia, which leads to severe facial discomfort and sudden shock-like attacks.

She was diagnosed eight years ago and since then has been living with excruciating pain, treated with a cocktail of powerful painkillers including morphine and anti-convulsants.

Nikki, from Larkfield, said she is keen to raise awareness of the rare condition.

She added: “It usually only affects the right hand side but I have bilateral TN, so have it on both sides.

“It’s like intense electric shocks in your face, like a lightning storm of pain in your face and head.

“I can have up to 200 attacks every day. It’s a horrible condition.

“It was triggered suddenly about eight years ago. I was just walking down the street with one of my daughters and a big shock came through my face which caused me to collapse.

“After a few weeks of tests I was diagnosed with TN.

“At first it only affected me on the right hand side, then it started on the left hand side as well.

“For about four years the pain has been so intense it’s physically impacted on every second of my life.

“My mobility hasn’t been great and I have muscle wastage throughout my body.” The disorder is very rare and affects four or five people out of every 100,000 each year, according to the NHS.

Twice as many women are affected as men.

The condition is most common in the 60 to 70 age group and is rare in people under 40 years of age. The trigeminal nerve, which is affected by the condition, is the largest cranial nerve and responsible for sensation in the face, as well as some motor functions such as biting and chewing.

The discomfort is caused by the nerve being squeezed by a blood vessel.

Nikki’s condition became so severe that she had to undergo surgery at the Southern General Hospital in September.

The procedure, called microvascular decompression, involves placing a piece of teflon sponge between the trigeminal nerve and the blood vessel to alleviate pressure – but proved unsuccessful.

Nikki said: “It didn’t work sadly.

“I was in hospital for four days, then I was back within 24 hours after the sciatic nerve in my back went.

“This has been going on since I was 29.

“I’m on a very strict medication regime which means I have to take morphine and anti-convulsants, but the pain still breaks through.” Nikki is married to husband John, 43, and they have five daughters, aged from four to 16.

Even when she tied the knot in August 2011, pictured left, she got no respite from the disorder.

She said: “Just before I got married and I was about to enter for the service I had some bad attacks.

“I was standing outside for a few minutes trying to get myself together before I went inside to get married.

“So even on my wedding day I had no escape from my TN.” TN has made Nikki a prisoner in her own home, as even a gust of wind can set off a series of painful shocks.

She said: “The weather is a big trigger, the wind and rain especially, so I am housebound a lot of the time.

“Very rarely do I brave going out unless it is calm and sunny, which is few and far between.

“Even everyday things like putting on make-up or washing my face can be triggers.” Living with chronic pain has also taken its toll on Nikki’s mental health.

She said: “It’s very depressing. Sometimes it looks as if I’ve had a stroke as my mouth drops and my eye screws up — when my face goes like that my family know what is wrong, they can see it happening in front of them.

“It’s very distressing and I am very self conscious and embarrassed. I can be totally fine one minute, then suddenly you get pain and shocks in your face and people are looking at you as if to say what is wrong with her? It’s a nightmare.

“The statistics show that of the 1.7million sufferers worldwide, 26 per cent take their own lives because of the pain — it’s called the suicide disease.” Nikki feels so self-conscious about her appearance she didn’t want to be photographed for this article but sent her own pictures to the Telegraph.

But her family are her rock and are helping her through the toughest of times. She added: “I cope with the support of my family, my husband and daughters, and I have a fantastic aunt, uncle and in-laws.” With their assistance Nikki has gained a COSCA certificate in counselling and hopes to study further.

She wants people to back International TN Day which is being held across the world on 7 October to lobby the World Health Organisation to recognise the condition so more research can be carried out.

Public buildings across the world will be illuminated in teal light on the day and Nikki is appealing for people in Inverclyde to follow suit.

For more information about the condition visit www.facebook.com/endTrigeminalNeuralgia or www.tna.org.uk