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Carol couldn't eat, couldn't drink, couldn't sleep, and couldn't work. And her doctors could not diagnose her trigeminal neuralgia.

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.

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.

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