TN - the disorder that 'sends a shock-like pain along the nerve'
'It's called the suicide disease, the pain is so bad'
IMAGINE pain so bad that you're scared to talk, chew, brush your teeth, go for a walk, or even receive a kiss. Visualise sudden jolts of electricity in the face which bring an agony so intense they leave you unable to concentrate, communicate or function.
That's everyday life for many patients with Trigeminal Neuralgia, a rare disorder of the trigeminal nerve, which is the main sensory nerve of the face.
The condition affects four or five people out of every 100,000 and twice as many women as men.
It's believed to become more common with age and is understood to be rare in people under 40.
It often hits without warning – for businesswoman and mother of four Bríd Mallon, it started back in 2000, when she was in her early forties, and heading off on a family holiday in the popular Co Clare resort of Kilkee.
Bríd, who runs a family meat distribution business with her husband Joe in Waterford city, recalls that it began with what seemed to be an ordinary toothache.
But it wasn't.
"I went to the dentist and he said he couldn't find anything wrong with my teeth.
"I tried another dentist and got the same story," she says. The pain was intermittent and increasing in intensity. Eventually Bríd was referred to a specialist dentist in Cork who dealt with orafacial pain and who diagnosed the problem as an onset of Trigeminal Neuralgia.
In Bríd's case it was believed that a blood vessel in the brain was pulsating against the trigeminal nerve. Although the affected nerve was on the right side of her face, the pains struck across her entire face.
"It causes immense pain all over the face. When I go to open my mouth or to rub my nose or chew, or even get a kiss, it sends a shock-like pain along the nerve.
"I often feel pain in my eye because the trigeminal nerve is very close to the eye and it sends shock waves through the eye. When it's very bad, I cannot go out on a windy day because the breeze blowing against my face could set it off," Bríd explains.
On a scale of one to 10, she says, the pain comfortably registers a 10.
"A gust of wind could set it off – the nerve endings are very sensitive and the slightest touch on the face can send it off, even from a gust of wind. I don't go out in the wind when the pain is bad because the wind can trigger it."
Bríd also has to be cautious about giving or receiving kisses or hugs to or from her five young grandchildren, who are innocently unaware that the slightest touch can send their granny into paroxysm of agony.
"Grown men and women can fall to their knees in agony with it. It's not as if you can take a painkiller – you might as well take smarties," says Bríd, who has got some relief from surgery and anti-convulsive medication.
In 2005 an operation which killed the nerve brought her six years of relief.
"It came back in 2011 and I got the treatment on three other occasions but it didn't have any effect. Last September I had radiotherapy, which the surgeon believed had an 80 per cent chance of success, but it didn't work.
"I'm currently back on medication. I'm on a high dose which is keeping it at bay, but you always feel it there in the background. The affected nerve is on the right hand side of my face but it affects my whole face."
The condition dominates her life, making normal daily routines difficult or even impossible – brushing her teeth or applying make-up can trigger an attack, as can chewing hard foods such as steak.
These days Bríd sticks to "soft" foods like pasta and chicken, which don't require a lot of mastication.
Outdoor exercise is also a problem, she says.
"I cannot go out with any peace of mind because if it's cold or windy it could set off the shock waves of pain. I have to literally cover my face with a scarf."
While the medication is a great help, the high dosage leaves her feeling flat and tired.
Although she still works – she does the company books – it takes longer. She also finds her personality changes during an attack.
"When I have the pain I tend to go very quiet because it takes over and even talking can send off a shock wave," she says, adding that reflexology sessions can help her cope with the pain.
It's not known for sure what causes Trigeminal Neuralgia, says Dr Dermot Canavan, a dentist specialising in the management of oral and facial pain, but there are theories.
"One is that a blood vessel in the brain may grow around the nerve root which is also in the brain.
"Some specialists also believe it is a disease in the nerve, where the outer covering, called the myelin, begins to deteriorate," says Dr Canavan, who has surgeries in Dublin and in the Galway Clinic.
"We have no conclusive evidence as to a cause, but we do know for sure that it's much more common in patients over the age of 50," he says.
However, Avril Hitchens (36) was still only in her late twenties when she noticed what she initially thought was a severe toothache on the left side of her face.
No toothache could have had the long-term effects this pain was to have on the life of the young mother-of-one.
Not only did it force her to completely change her eating habits, she had to leave her job as a preschool teacher.
Initially it was a mystery – three different dentists told the Waterford city woman she had no dental problem, while hospital tests found nothing. By the time she was referred to a neurologist, the pain was so bad she couldn't eat or talk.
Anti-convulsant medication didn't help, but when an MRI scan showed a blood vessel pressing on the trigeminal nerve, she was referred to a neurosurgeon, and an operation was carried out.
Although it was successful, another problem surfaced – Occipital Neuralgia – which caused enormous pain on the top and left side of her head.
Irritation of the occipital nerves can cause a shooting, electric, or tingling pain very similar to Trigeminal Neuralgia, although the symptoms are located on one side of the scalp rather than in the face.
The pain from this was so agonising that over the following months Avril lost around three stone.
Three months after the surgery, her Trigeminal Neuralgia re-surfaced – this time on the right side of her face.
Since then Avril has been attending a pain specialist for injections into the head and neck and is on ongoing medication – her sister has also been diagnosed with Trigeminal Neuralgia, she says.
It had a huge impact on her life. She was on sick leave for two years and had to give up her job.
"I couldn't manage the physical lifting involved – or the noise," she recalls. She now works part-time as a sales assistant.
"I cannot eat anything solid that requires a lot of chewing, and I cannot go out in cold or windy weather."
Her social life has also been affected because, she says, of the enervating effect of the condition.
"On my return from work I just want to rest," she says.
Public awareness of the condition is poor, says 28-year-old Sarah Heavey, of Ballivor, Co Meath.
The former childcare assistant joined the Trigeminal Neuralgia Ireland Support Group in September 2013 after being diagnosed with the condition the previous July.
"Even after I was diagnosed, I had never heard of it.
"I had to research it on the internet and couldn't find a lot of information," says Sarah, who is campaigning for more understanding about the condition.
She was instrumental in arranging for the O2 arena in Dublin to be lit up with teal-blue lights on October 7, to mark World Awareness Day for TN.
"I felt that if a place like the O2, and other well-known venues, got involved, it would increase awareness of the condition," says Sarah.
Internationally, Niagara Falls and other well-known locations are set to turn teal-blue to mark the occasion.
Set up in 2002 the Trigeminal Neuralgia Ireland Support Group remained small – with just 30 members – until about 18 months ago when it was featured on the Joe Duffy Show.
Committee member Maura Fagan recalls how lots of listeners with the condition suddenly began phoning in to the show – and the issue ran for more than three days.
More than 150 people turned up at the next meeting and the group's membership has now risen to about 150 sufferers across the country.
"A lot of people don't know about Trigeminal Neuralgia. It seems to be more common than we realised – it's just that people are not aware of it," said Ms Fagan, who has been suffering from the condition for some 24 years.
Sarah Heavey and other TN campaigners want to generate more public awareness of the condition, and are campaigning to have it discussed in newspapers, on television and radio as well as on the internet.
"There is an astounding lack of knowledge out there about it," she complains. A lot of the information about it is on the internet but very often this disease affects women over the age of 50. Some of these women may not be as tech-savvy as younger people and I believe they may be missing out on information about the condition."
The next meeting of the Trigeminal Neuralgia Ireland Support Group takes place on Saturday, September 6, at 2.30pm in the Maldron Hotel, Tallaght, Dublin.
Visit the Trigeminal Neuralgia Ireland Support Group's Facebook page or email firstname.lastname@example.org
Health & Living