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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.

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.

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.

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