"It was the worst pain I had ever had in my life," says Linda Brown of her first episode of trigeminal neuralgia (TN). "It would take me down to my knees. I couldn't even talk; it was a paralyzing pain."

Nothing unusual had sparked the searing facial pain which began in February 2003. The 53-year-old office manager first believed it was a dental problem. The radiating stab affected the left side of her face between her ear and nose, above her teeth, and hit suddenly about 10 times a day. She would take six Tylenol to get 15 minutes' relief.

The dentist prescribed two root canals and two crowns. Weeks after healing, the pain persisted. The dentist redid the root canals and eventually put her on a steroid and four antibiotics. Despite all these measures, the torture continued.

In July, Brown saw an endodontist (a specialist in disease of the dental pulp and root), who did more work on the same teeth. But, he suspected the neurological condition, trigeminal neuralgia (TN) was the real problem and referred her to a neurologist. After two rounds of CT scans and MRIs her neurologist confirmed the diagnosis.

TN is a condition affecting areas served by the trigeminal nerve, a large, three-branched facial nerve. Sometimes the problem is that an artery or another nerve lies too close to the trigeminal nerve. This pressure can injure the sheath that insulates the nerve fibers, resulting in electrical impulses that register as pain.

"One of the most frustrating aspects of this disorder is that the patients appear normal, yet are experiencing excruciating pain, so, family and coworkers don't realize how serious the problem is," says Milvia Y. Pleitez, MD, assistant professor at The University of Texas Medical School at Houston, who is Brown's neurologist.

Other causes can be tumor, aneurysm, stroke, multiple sclerosis and, possibly, viral infections. Sometimes, there is no known cause. The disorder is more common in women than in men and tends to occur most frequently after age 50.

Brown was treated with oxcarbazepine, an anticonvulsant, that also is used for some nerve pain and went through several dose adjustments before she got relief . She is now pain-free, but only as long as she is on the medication.

"If I had been more educated about this disorder, I could have spared myself a lot of anguish," Brown says. "I wouldn't wish this on anyone."

Lorraine Wulfe had her first TN episode in 1999. She experienced "excruciating lightning bolts of pain" down her left jaw, lasting 20 to 30 seconds. Like Brown, she was treated unsuccessfully by dentists who thought it might be referred pain from her jaw or teeth.

Finally, she consulted a neurologist who diagnosed her with "atypical" TN, a slightly milder form of the condition. Wulfe did not want to take medication and sought alternative treatments such as acupuncture, massage and chiropractic medicine. She also joined a support group from the Trigeminal Neuralgia Association.

"For me, what triggers the pain changes over time," Wulfe says. "Sometimes it can be the wind, turning my head, vibration, eating or talking. My feeling is that the cause is not all black and white - that stress and emotions also can play a part. I have a high tolerance for pain, but there is nothing like this drop-to-your knees pain."

Treatment for TN

Patients are usually first treated with anticonvulsants. If these are ineffective or, if over time, the pain returns, other treatments such as nerve blocks (alcohol injections) can be given to provide temporary pain relief, but these must be repeated.

About 30 percent require additional interventions. Most of them work by damaging the nerve so that it no longer transmits pain. If a blood vessel is lying too close to the trigeminal nerve, microvascular decompression is the procedure of choice. The surgeon lifts the vessel off the nerve and places padding between the nerve and the encroaching vessel, Pleitez says. A radiologic procedure (radiosurgery) that uses a gamma-knife is also growing in popularity.

Glycerol injections can be useful for older patients who cannot tolerate surgery. Other procedures use a balloon, electrical current or radiation to damage the nerve root in an effort to stop the pain.

Most patients with TN can be helped with medication, according to Pleitez.

"There is often a trial-and-error period, so it may take a little while to find the right medication and dose for each patient," she says. "But help is available."

Still, Wulfe feels lucky "after reading about what some people go through, pain that is so constant and severe that they have actually contemplated suicide."

Last Updated: 12-06-2004

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