Facing the pain: Trigeminal neuralgia, the excruciating condition no one has heard of

It's one of the most painful afflictions known, marked byattacks that sufferers describe asstabbing painor electrical shockto the face.

It can be triggered by something as simple as a kiss,or by nothing at all.

Its medical name is trigeminal neuralgia but it's often dubbed the suicide disease because, for some, that feels like the only solution.

There's no cure.

"I'm only here by the grace of very heavy duty, anti-seizure medications," Teryl Berg, who was diagnosed a decade ago, told CBC's Radio Active on Monday.

"I've been quite suicidal at times, but thankfully I've had amazing family support and medical support and I got through that. But it's tough. It's a really tough condition."

Took a whileto diagnose

Monday was Trigeminal Neuralgia Awareness Day, the seventh to mark a condition that affects a tiny fragment less than 0.2 per cent of the population.

There areabout 100 to 200 diagnosed cases per 100,000 people, primarily older adults and seniors, according to The Centre for Cranial Nerve Disorders at the University of Manitoba. About 1,500 new cases are diagnosed each year.

At 21, Berg began experiencing chronic,progressive pain about a week after suffering a whiplash injury.It started with a burning sensation that, in time,evolved into sharp attacks.

The condition is caused by a malfunction of cranium's trigeminal nerve, which is responsible for sensations in the face and motor functions like biting and chewing. The nerve has three divisions,each responsible for either the forehead and eye, thecheeks or the lower face and jaw.

Berg's TN affects two divisions, meaning the pain is most intense in the eyes and cheeks.Triggers include touching the face, brushing teeth, chewing, even the feel of a breeze.

It took two years for doctors to make a diagnosis, ruling out cluster headaches, migraines, TMJ, said Berg, a harm reduction support worker at the George SpadySociety.

The process involved testing different treatments and medications. Tegretol and gabapentin"basically took my pain away entirely," as did a peripheral nerve block. "So that's a good clue," Berg said."That would not take awayTMJ pain or things like that."

Berg has undergone two surgical procedures: microvascular decompression and a rhizotomy, a destructiveprocedure aimed at destroying the tregeminal nerve root.

"Both of which did help for a period of time. Amazing. It felt like. 'OK. I've done it. We've solved it,' " Berg said."[Then]over a year later it came back worse.

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Bergis on a waiting list for gamma knife surgery but is holding off while pursuing stemcell injections into theneck.

"We're thinking that might actually help," Berg said of the injections, which are being done in the U.S."That's why I'm holding off on the gamma knife, trying something constructive instead of destructive."

The difficulty in diagnosing TN, especially among younger people, and the slow advance of treatments are among the reasons that an annual awareness day was launched.

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Berg agrees more research into the malady and treatments are needed but added thatincreased awareness will make it easier when someone with TN suffers an attack.

"It can be really awkward. It's something that can strike out of the blue and so, if people don't really know what's happening, it takes quite a bit of time to explain what's happening," Berg said.

"And when you're having an attack you can't really do that."