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Trigeminal neuralgia — what is this relatively unknown ailment?

People with trigeminal neuralgia may endure pain so intense, they are unable to eat, talk, swallow, brush their teeth or otherwise live a normal life when the pain occurs. | stock.adobe.com

It sounds like a macabre answer on the TV game show “Jeopardy”: An ancient malady that causes occasional sharp, stabbing, electric-shock-like pain along a nerve on a person’s face so terrible it’s been called “the suicide disease.”

In reality, it’s trigeminal neuralgia — so named because the pain is caused by the trigeminal nerve that begins just behind the ear on either side of the face and spreads across the cheeks, jaw, lips and nose. Most people mistakenly assume they have an abscessed tooth.

The first clear description emerged in 1671, when the excruciating pain afflicted a well-known physician, Johannes Laurentis Bausch of Germany (1605–1665), founder and first president of the Imperial Leopoldian Academy of Natural Sciences, according to a report co-written by University of Illinois at Chicago neurosurgeon Dr. Konstantin Slavin.

Dr. Konstantin Slavin | University of Illinois at Chicago

People with trigeminal neuralgia may endure pain so intense, they are unable to eat, talk, swallow, brush their teeth or otherwise live a normal life — but only when the pain occurs. Unlike other kinds of chronic pain, the shooting facial pain comes and goes, and can start up again months or years after the first episode.

“Patients are usually normal and very functional between the painful attacks,” said Slavin, who runs UIC’s neurosurgical clinic and has researched the condition for 27 years.

Sufferers experience pain on one side of their face — more often the right — but people with multiple sclerosis sometimes have pain on both sides, experts say.

In many patients, the culprit may be a blood vessel pulsating against the nerve. The insulation around the nerve wears away, letting the nerves misfire. This leads the brain to misinterpret normal facial sensations as searing pain.

“Using high-resolution MRIs, we can see an artery in the brain pushing on the trigeminal nerve, and eventually, the cabling of the nerve wears off,” said Dr. Babak Jahromi, a neurosurgeon at Northwestern Memorial Hospital. “The pain has triggers that make living a normal life almost impossible – generating knife-like stabs from a kiss, a cold wind, brushing your hair or taking a shower.”

About 150,000 people are diagnosed nationwide each year with the painful condition, although 2 to 3 percent of multiple sclerosis patients suffer from it, Jahromi said.

It’s more common in women than men by a 2 to 1 ratio, and tends to afflict people in their 50s and older, but it can hit anyone, the doctors said.

Unlike ancient treatments like burning the nerve through the skin, today’s treatments start with medicine and, if the condition worsens, advances to surgery.

Medications can help ease the pain, but they can become less effective over time or cause side effects such as grogginess and tiredness, which is why many patients choose surgery.

In the right patient, neurosurgeons can separate the nerve from the compressive artery by inserting a tiny pillow of Teflon under a microscope. Or they can thread a small needle along the lining of a person’s cheek, behind the back teeth and to the base of the skull, where they compress the nerve with a small balloon. A last option involves radiation to numb the nerve.

Though such surgery can relieve the pain, Slavin said UIC researchers and others are working to find genetic causes for trigeminal neuralgia so they can diagnose and treat it earlier.

“Now, it’s completely random,” he said.

Genetic advances may lead to ways to cure the disorder without surgery, Slavin said. “Maybe in 20 years, we’ll say, ‘Can you imagine? Back in the day, they did surgery [for the condition].”

Sandra Guy is a local freelance writer.