Trigeminal Nerve Damage: Torturous Disease Doctors Often Fail To Diagnose

Carol couldn't eat. She couldn't sleep. She couldn't work. After six months of a declining condition, she seemed to be wasting away, starving because it was simply too painful to eat. Carol's doctors told her it was all in her head, or maybe she had herpes, but she and her husband knew it was something that was hardly psychosomatic.

A Baffling, Intensely Painful Sensitivity to Touch

Not only could Carol not eat, she could not wash her face or brush her teeth. She and her husband couldn't kiss. The slightest touch to her face caused waves of pain that she speculated might be the way it felt to be electrocuted. Her mouth burned all the time, and sometimes her face became intensely painful for no apparent reason at all. Finally an ER nurse realized that Carol actually was going to die if she didn't get treatment, and she spent over an hour asking the questions that enabled a doctor finally to make the right diagnosis.

Carol had a condition known as trigeminal neuralgia. Also known as tic doloreux (literally, "painful tic"), this disease is an abnormality of the fifth cranial nerve, also known as the trigeminal nerve. This nerve is widely distributed over the face, reaching the cheek, upper jaw, teeth, and upper lip. The neuralgia, or nerve pain, can be intermittent (type 1 trigeminal neuralgia) or constant (type 2 trigeminal neuralgia). Both forms of the disease cause burning, stabbing, aching pain, although type 1 pain is somewhat less intense. It is possible to have both type 1 and type 2 trigeminal neuralgia at the same time.

What Causes Trigeminal Neuralgia?

Trigeminal neuralgia isn't the same thing as temperomandibular joint syndrome, or TMJ. The problem underlying trigeminal neuralgia usually is a blood vessel pressing on the trigeminal nerve at the point it leaves the brain stem. In a few cases, the pressure on the nerve is caused by a tumor, or by a tangle of blood vessels known as an arteriovenous formation, or by injury to the nerve by trauma, surgery, or radiation. Constant pressure on the nerve causes it to lose its protective coating, and makes it unusually sensitive to mechanical stimulation. Vibration or contact to the cheek from:

• Brushing teeth,
• Washing the face,
• Putting on makeup,
• Shaving,
• Eating,
• Drinking,
• Talking,
• Laughing, or
• Exposure to the wind

can trigger intense pain. These attacks typically do not occur when the individual is sleeping.

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Trigeminal neuralgia symptoms tend to worsen over time, and the intervals between attacks grow shorter. The condition is not fatal, but people who have it may withdraw from daily activities that cause them recurring pain.

Who Gets Trigeminal Neuralgia?

My friend Carol was diagnosed with trigeminal neuralgia when she was still in her twenties, and trigeminal nerve damage may occur at any point in life, even in infancy, but the condition is most common in people over the age of 50. Multiple sclerosis increases the likelihood of the disease. Trigeminal neuralgia is more common in women than in men.

Getting Diagnosis And Treatment for Trigeminal Neuralgia

In the United States, there is an epidemic of drug addiction, and increasing numbers of drug-related deaths, stemming from the abuse of pain killers. As a result, doctors, especially in the Northeastern and Appalachian states, are extremely skeptical of claims of excruciating pain that might require high doses of pain killers. When a patient has been diagnosed or misdiagnosed with a psychiatric disorder, doctors are even more reticent to make a diagnosis of trigeminal neuralgia. Ironically, trigeminal neuralgia is treated primarily with antidepressants, not with opioid pain killers, in small doses, not in high doses.

The first step in getting a diagnosis of trigeminal neuralgia is ruling out other conditions with similar symptoms, such as:

• Post-herpetic neuralgia. This is a condition of residual pain after an outbreak of shingles.
• Temperomandibular joint syndrome. This pain is usually worse with chewing. It may be accompanied by clicking of the jaw and popping in the ears. It gets worse over the course of a day, while trigeminal neuralgia comes and goes.
• Cluster headaches and migraine headaches. These kinds of headaches can cause pain on just one side of the head, like trigeminal neuralgia, but are not triggered by movement. Cluster headaches usually occur at night, but trigeminal neuralgia usually does not. Migraine headaches may occur as frequently as daily, but trigeminal neuralgia, at least at first, may only occur about once a month.
• Atypical face pain. This syndrome causes dull pain with distortions in other sensations, while trigeminal neuralgia causes sharp pain without distortions of sight, smell, or touch.

When other conditions are rule out, doctors don't usually do medical imaging (MRI with and without contrast) to confirm the condition is trigeminal neuralgia. Instead, they go directly to treatment. If a low dose of an anticonvulsant such as carbamazepine (also known as CBZ and sold under the trade name Tegretol), or, if for some reason anticonvulsants are not acceptable, old-style antidepressant such as amitriptyline (Elavil) works, then the doctor usually doesn't try to find the cause of the pressure on the blood vessel, unless there are other indications of a tumor.

Pain relievers that work for other chronic conditions do not help trigeminal neuralgia. Aspirin, Tylenol, Vicodin, and Oxycodone are useless in treating the condition. Anticonvulsants and antidepressants are standard treatment. Often it only takes one or two doses of just one medication to get immediate relief. It may be possible even to go drug-free after a few months. If trigeminal neuralgia comes back, then doctors usually restart the first drug and add another. It may be necessary to take two or three different medications when the condition has progressed to type 2. Some people get lasting relief from Botox injections. There are a variety of surgeries for the most severe and intractable cases.

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Alternative medicine is often helpful but seldom enough on its own. People who have trigeminal neuralgia symptoms often respond well to acupuncture, biofeedback, vitamin therapy, yoga, creative visualization, and aromatherapy, although none of these complementary methods is enough to eliminate the disease. Just be aware that trigeminal neuralgia is not a psychosomatic disorder. It's not all in your head. It merits medical treatment, and you won't get better until a doctor takes you seriously. If your doctor doesn't, find other medical help.