STORY BY"It was the worst pain I had ever had in my life," says Linda Brown of her first episode of trigeminal neuralgia. "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 for Brown who was in her early 50s at the time and an office manager. She 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.
Eventually, 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 that transmits impulses from the face to the brain. Sometimes the problem is an abnormally looped artery or vein that puts pressure on the trigeminal nerve as it leaves the brain stem. This pressure can injure the myelin sheath, the covering that insulates the nerve fibers, resulting in electrical impulses that register as pain.
The main symptom of TN is sudden episodes of facial pain. Pain may be:
"This typically is described in all medical textbooks as the most severe pain one can imagine," says Jerry Wolinsky, MD, professor of neurology at The University of Texas Health Science Center at Houston (UTHealth). "It begins abruptly and is very short-lived but can occur in recurrent bouts. Often there are 'trigger points' that when touched will precipitate paroxysmal pain. Sometimes just opening the mouth will do this, and other times taking food or liquid into the mouth will set off the bouts of pain."
Wolinsky, who directs the Multiple Sclerosis Research Group and Magnetic Resonance Imaging Analysis Center at the UTHealth Medical School, says trigeminal neuralgia occasionally can be a manifestation of multiple sclerosis, a disorder that damages the myelin sheath or protective barrier around nerves. Very rarely, he adds, trigeminal neuralgia is due to a local tumor putting pressure on the nerve.
In most cases, Wolinsky says, 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's episodes of trigeminal neuralgia caused her to experience "excruciating lightning bolts of pain" down her left jaw, lasting 20 to 30 seconds. Like Brown, she was treated initially by dentists who thought it might be referred pain from her jaw or teeth. However, this diagnosis was incorrect.
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."
Frederick Silverman, DDS, remembers studying trigeminal neuralgia in dental school but never thought that was causing the facial pain he describes as feeling like a "vibrating, serrated, ultra-sharp, very long stiletto blade shoved through your eye and into your brain." Imagine further, he says, that the blade is white hot and connected to an electrical outlet and that "the intensity of the pain increases dependent upon the amount and duration of your body movements.
"That is the kind of typical pain of TN sufferers," continues Silverman, who is now an associate professor of prosthodontics in the Department of Diagnostic Sciences at the UTHealth Dental Branch. "I know that because that is what it felt like to me for about eight and a half years."
Thinking the pain might be due to cracked tooth syndrome, Silverman initially consulted with an endodontist and a periodontist about it. The pain, however, became more intense over time and then developed distinct migrating trigger points involving the right nasal, upper lip and upper teeth areas. His endodontist found an article that offered a differential diagnosis and showed it to Silverman.
"I ran down the list of possible ailments until I saw trigeminal neuralgia," he explains. "I sat back and said, 'That's it.' I knew I had it."
Seeking an official diagnosis, Silverman consulted with a neurologist who prescribed carbamazepine (an anticonvulsant) at an initial low dosage for the pain, and the pain went away. He continued to take carbamazepine for about two years, gradually having to increase the dosage for pain relief, until it reached a point where it was determined that the drug was becoming toxic to his body.
"I had to get off the drug," Silverman explains. His next step was an appointment with a top neurosurgeon.
In 1991, Silverman had stereotaxic radiofrequency thermocoagulation treatment performed by the late Dr. William Sweet, who pioneered the minimally invasive neurosurgical technique that uses heat to burn the nerve fibers that transmit pain.
Silverman's surgery was successful, but as an expected consequence, the damaged nerve caused permanent facial numbness. "One half of my face is numb from the top of my scalp down to my chin and from my nose back to my ear," he explains.
While Silverman took the neurosurgical route to treat TN, anticonvulsants remain the first-line therapy for patients. Most of the anticonvulsants have proven effective in blocking the pain, Wolinsky says, but this is a bit of a trial-and-error process.
"Fortunately, bouts of trigeminal neuralgia are often self-limited," he explains. "Once the patient has been pain free for several months, one can then consider reducing the dose of the medication slowly to see whether any remnants of the pain return. Often the patient can get off the medication and may never experience another bout. Or after many months, when the bout begins again, abort the pain with medication."
When medications prove ineffective, a number of treatment options are available. Peripheral nerve blocks (alcohol injections) can be useful in providing temporary pain relief, but these must be repeated.
Other patients benefit from surgery that either stops the vessel from compressing the nerve or damages the nerve so it no longer transmits pain. These include close surgical procedures which direct radiofrequency to the trigeminal nerve near where it enters the brain stem, very directed radiation therapy as with a gamma knife and, in some instances, an open neurosurgical procedure to look for vessels which may be putting undue pressure on the trigeminal nerve. When these are found, they can be gently moved away from the nerve, and the nerve cushioned with a small piece of muscle, Wolinsky says.
Despite the side effect of facial numbness from his surgery, Silverman feels lucky. "They zapped me," Silverman says of his experience with surgery. "That was 19 years ago. I get twinges of pain every once in a while, but after 19 years, I'm good – really, really good."
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Last Updated: 07-06-2010
The University of Texas Health Science Center at Houston (UTHealth), the most comprehensive academic health center in The UT System and the U.S. Gulf Coast region, is home to schools of biomedical informatics, biomedical sciences, dentistry, medicine, nursing and public health. UTHealth educates more healthcare professionals than any health-related institution in the State of Texas and features the nation’s seventh-largest medical school. It also includes a psychiatric hospital and a growing network of clinics throughout the region. The university’s primary teaching hospitals include Memorial Hermann-Texas Medical Center, Children’s Memorial Hermann Hospital and Lyndon B. Johnson General Hospital. Founded in 1972, UTHealth’s 10,000-plus faculty, staff, students and residents are committed to delivering innovative solutions that create the best hope for a healthier future.
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Dr. Jerry Wolinsky is a professor of neurology at the UTHealth Medical School.
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Simple Ways to Help
Young and Old Eyes
May is Healthy Vision Month and it is imperative to take care of eyes whether they’re young or old.
Children should have their vision checked by age 6, even if there aren’t any signs of eye problems. Healthy eyes and vision are very important to a child’s development. Finding and treating eye problems early on can save a child’s sight. Two common eye problems in children are:
Both of these eye problems can be treated if they are found early.
Here are ways to help your child develop vision skills:
Don’t let poor vision put elders at risk. Leave a three-foot, clear path through each room of their house. Outline edges of steps, coffee tables, doorways and bathtubs with colored tape to contrast with surrounding areas. Install lights along outdoor pathways and keep foyers well lit to avoid having to enter dark areas. Replace switch plates with colors that contrast with walls, or outline them with tape of contrasting colors. It is also always smart to use nightlights during the night.
