About eight years ago, Shushanik Abrahamyan began experiencing severe pain in her face. Conventional analgesics seemed to have no effect and doctors in her native Armenia were at a loss as to what was causing it.

When she would go to a party, the pain would commence as soon as the band began to play. She had to leave immediately.

Some physicians thought it might be some kind of severe migraine and her friends and family began to think she might be imagining it. “Nobody took her seriously,” said Abrahamyan’s daughter, Ana Nahapetyan.

The pain was like a severe jolt in her molars. Abrahamyan asked dentists to remove the teeth, but she was turned down. They seemed healthy. Finally she found a dentist who would do it for her and in the end, six of her teeth were pulled. The pain persisted.

A chance conversation at the offices of The CJN marked the first step to her getting relief.  Ana was speaking to fellow employee and Ask Ella columnist Ella Burakowski about her mother’s travails and Ella recognized immediately what she was going through. It was the same type of pain she herself experienced many years ago.

Have your mother take Tegretol for a few weeks and see if that helps, she advised.

Ana passed along the advice and her mom, desperate for anything that could spell an end to the agony, purchased the medication from her pharmacist (in Armenia you can get any sort of drug without a prescription, Ana said).

“She was desperate, she was living on pain killers, every kind, but they didn’t help her,” Ana said.

Abrahamyan took the Tegretol and within a couple of weeks the pain was gone.

When she was first stricken with trigeminal neuralgia in 1992, Burakowski experienced pain similar to what Abrahamyan went through. “It’s like being shocked with an electric prod,” she said. It could be brought on by brushing the teeth, touching the cheek or just having a meal.

Burakowski too approached her cousin, an endodontist, and asked him to remove her teeth. He could find nothing wrong with them and wouldn’t do it. A trip to a gum specialist didn’t help and after a time she was referred to a facial pain clinic at Mount Sinai Hospital.

On her first trip to the clinic, “the guy diagnosed me in two seconds,” she said.

She was prescribed Tegretol, a medication used to treat people suffering seizures, and soon the pain subsided.

Ze’ev Seltzer knows what those suffering with trigeminal neuralgia are going through. A professor of genetics at the University of Toronto, Seltzer is part of an international team studying the illness. The project is headed by Dr. Marshall Devor, a Toronto native who is laboratory head and former chair of the Department of Cell and Development Biology at the Institute of Life Sciences at the Hebrew University and who founded the school’s Center for Research on Pain. It is funded by the Facial Pain Research Foundation.

The team is exploring the genetic component of the illness – the predisposition of some people to suffer from the disease while others, who have the same nerve compression, seem to be untouched.

“This is a terrible disease,” said Seltzer. “It is the most excruciating pain syndrome that exists.”

Painful as it may be, only 70 out of 100,000 people suffer from it, making it extremely rare, especially when you consider that worldwide 20 to 25 per cent of the population will suffer from chronic pain sometime during their lifetime.

In recent years, thanks to new imaging techniques, researchers have come to learn that 16 per cent of the population “have the congenital abnormality in which a blood vessel compresses on the nerve root,” causing the condition, Seltzer said.

Researchers are investigating why only a small portion of that group actually suffer the excruciating pain, while most don’t, he continued. They think there’s a genetic reason for it, a gene or group of genes which predisposes some to experience the pain while others don’t.

“We believe that the reason for the pain … is a variant of one of the genes” or a number of genes that affects a patient’s sensitivity to pain, he said.

Researchers are hoping to isolate the gene or genes involved so that a treatment can be developed, Seltzer said.

While there are currently treatments available, none are foolproof. Medication works, but it has nasty side effects. Vascular decompression surgery doesn’t work for everybody while another surgery, which cuts the nerve, “leaves the face completely numb and sometimes even this doesn’t work,” Seltzer said.

Burakowski maxed out at 1200 mgs of Tegretol (Abrahamyan takes 800) but after 13 years, it stopped working. Even while on the drug, she hated the side effects. It made her sleepy and “you can’t get out your words. It’s nicknamed the stupid drug,” she said.

Going without medication was not a solution. “You’re left with very little quality of life. You couldn’t move or talk. It’s called the suicide disease” because some sufferers end their lives rather than continue with the constant pain.

Faced with the return of the pain, Burakowski opted for surgery. She interviewed six surgeons to find the one most familiar with the illness and in 2005 underwent microvascular decompression, a form of   brain surgery.

Three months after the surgery, she was back to normal.

“I’m happy with how I came through,” she said. “It wasn’t nearly as bad as I thought it would be.”

Recording her experiences online and later on Facebook, she learned there were thousands just like her, going through the vagaries of the disease. She still updates her status on the anniversary of her operation, which has kept her pain free for nine years.

Not all surgeries work so well or last much longer than 10 years, said Seltzer. That’s why an effort is needed to find a more permanent cure for the illness. The race is on to find the genes in question. When they do, it’s likely not just trigeminal neuralgia patients who will benefit.

There could be application to others suffering chronic pain such as amputees or those experiencing post-surgical pain, even from knee or hip replacements.

The team is collecting a patient database of 500 trigeminal neuralgia sufferers in 10 or 11 medical centres. They are hopeful to have located the gene or genes in question within 10 years and develop a pharmacogenomic solution to it, said Seltzer, adding that the costs of the study are substantial. Contributions are always welcome.