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38 m a s s a g e & b o d y w o r k m a r c h / a p r i l 2 0 2 0 education PATHOLOGY PERSPECTIVES Tic, Tic, Tic Douloureux The Mysterious—and Frustrating—Condition of Trigeminal Neuralgia By Ruth Werner Trigeminal neuralgia (TN), a topic that turned out to be much more challenging than I anticipated, is a potentially devastating condition we know infuriatingly little about. Another term for TN is tic douloureux, or "unhappy spasm," which describes the reaction people have to burning, shooting paroxysms of nerve pain on one side of the face. TN, which may involve structural changes to only a tiny piece of tissue, can utterly destroy a person's quality of life. Fortunately, we are slowly learning more about this condition, and with that knowledge we hope to develop more refined and effective treatment options. Massage therapy is unlikely to correct TN, but massage therapists can offer some peripheral benefits to clients whose lives may be disrupted by this difficult situation. I am especially grateful to my friend and neighbor Susan Fox, a park ranger with the National Forest Service, who generously shared her experience with trigeminal neuralgia, along with her inspirational attitude toward life with this challenging condition. TRIGEMINAL NEURALGIA IS A TERRIBLE CONDITION Imagine that someone you love has occasional jolts of blinding, electric-shock pain on one side of their face. It could be mainly in the forehead, the eye, the cheek, the nose, or the jaw—or any combination. These jolts may last only an instant or persist for several seconds. While sometimes they're predictable—they happen when doing things like chewing or swallowing or talking—sometimes the attacks seem to be completely spurious, unattached to any trigger or stimulus. Descriptions of this pain are remarkably consistent. "Zapping." "Exploding." "Stabbing." "Hot poker shoved up the nose." "I'd had little twinges for months. Then, the first big attack came—you never forget that moment. I was standing in the kitchen, and the shooting pain literally dropped me to my knees, and I cried out. My poor husband came running—he thought I'd cut myself." —SF Episodes may happen dozens of times a day, and then go away for a while, only to come back weeks or months later for no known reason. "If you rate pain on a scale of 1–10, and 10 is, "I shot myself "—this is 11." —SF Think about living with that possibility hanging over your head. All the time. Every minute. It's not a surprise that trigeminal neuralgia is sometimes called the "suicide disease." WHAT IS TRIGEMINAL NEURALGIA? Trigeminal neuralgia is a condition that is identified mainly by its signs and symptoms, specifically paroxysmal bolts of pain on one side of the face. TN is sometimes discussed as two subtypes. Classic TN involves short episodes of extreme pain, with no pain between incidents. Secondary TN can involve low-grade dull or aching pain that is more or less constant, with occasional episodes of the extreme shocks or bolts of pain seen with classic TN. Secondary TN is likely to be related to multiple sclerosis, a tumor, an aneurysm, or some other lesion that may press on the trigeminal nerve. A number of other issues can cause facial pain, and of course it is possible that a person could have more than one problem at a time. I discuss the peculiar nature of TN pain and its differential diagnoses in the video that accompanies this article. "I had tests, but no MRI, over about a year. They kept saying, 'I think you're fine.' When my big attack happened, I finally did my own research—that's when I found out about TN. I asked my doctor about it and he shrugged and said, 'It could be dental.' " —SF WHO GETS TRIGEMINAL NEURALGIA? Estimates about the incidence of TN vary, partly because we don't have a universally accepted definition or diagnostic criterion for this condition. Many experts suggest about 15,000 people are diagnosed each year, and estimates suggest about 140,000 people in the United States currently live with this condition. It can happen at any age, but it is rare before age 40 and most common in people over 60. Women have it more often than men, at a ratio of about 3:2.

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