BBC News Online Health Staff
Just swallowing could send Carole Straker into spasms of intense pain, leaving her reeling on the floor in agony.
The lightest touch could trigger pain
Her face was ultra-sensitive to the slightest touch.
And for years, doctors were mystified over what was causing her problems.
Then they discovered that she was suffering from a rare facial condition - trigeminal neuralgia.
"It started 16 years ago after I had been to the dentist," Carole said.
"I had a tingle just in front of my ear. I thought it would go away, but it didn't.
"For three or four years, I was going backwards and forwards to hospital with them trying to find out what it was.
"I was put on anti-convulsants and they had some pretty dreadful side affects. At the end of it, I was near to collapse.
"I could not drink or swallow my own saliva because just by doing that I could cause a trigger point that would cause severe pain.
"It was like having 40,000 volts shot through your face and each spasm could last for up to a minute and was unbearable.
"The lightest of touches could cause one of these trigger points. I was suicidal."
Then doctors told Carole she had trigeminal neuralgia, caused when a blood vessel presses on a nerve, sending the wrong messages to the brain.
Doctors then carried out an operation on Carole's skull.
What is Trigeminal Neuralgia?
It is a disorder of the cranial (trigeminal) nerve that causes episodes of intense pain in the face
Most people get their first symptoms after the age of 50, but there are some known cases in children and even babies
"It was like turning off a light. All the pain had gone and I was free of pain for seven years," she said.
Unfortunately for Carole, her pain returned and she needed yet more surgery.
Again, she was pain-free, this time for three years.
But now her pain is back and she is contemplating yet more vital surgery.
"I have it again and it is a foul condition," she said.
Experts say more than a quarter of adults in the UK suffer from facial pain, but less than half of them seek treatment.
Of those who do seek treatment, many fail to get a speedy diagnosis.
Dr Joanna Zakrzewska, of the Department of Oral Medicine at Barts and the London, Queen Mary's School of Medicine and Dentistry, blames a crossover between dentistry and medicine for the problems.
She said too many patients fell between two stools.
"Orofacial pain falls between dentistry and medicine in that it requires input from both these broad specialities.
"People suffering from these types of pain are unsure whether to seek help from a doctor or from a dentist.
"Dentists tend to look for dental problems and treat those without looking at the patient holistically.
"There is little on medical school curriculums pertaining to orofacial pain so doctors can end up referring patients to a dentist."
Worried by this lack of crossover, Dr Zakrzewska has launched a book, Assessment and Management of Orofacial Pain, to try to give both doctors and dentists a better grounding.
"There has been no comprehensive guide to orofacial pain in the UK so this book has been produced in order to fill that gap," she said.
"The book has been written by a multi-disciplinary team and provides information for sufferers on how to cope better with pain, as well as chapters on specific orofacial conditions such as facial joint pain, dental pain, trigeminal neuralgia and rare causes of facial pain."