In the case of trigeminal neuralgia the affected nerves are responsible for sensing touch, temperature sensation and pressure sensation in the facial area from the jaw to the forehead. The disorder generally causes short episodes of excruciating pain, usually for less than two minutes and usually only one side of the face. The pain can be described in a variety of ways such as "stabbing," "sharp," "like lightning," "burning," and even "itchy". In the atypical form of TN, the pain presents itself as severe constant aching. The pain associated with TN is recognized as one of the most excruciating pains that can be experienced.
Simple stimuli such as eating, talking, making facial expressions, washing the face, or any light touch or sensation can trigger an attack (even the sensation of a cool breeze). The attacks can occur in clusters, as an isolated attack, or be completely constant. Some patients will have a muscle spasm which led to the original term for TN of "tic douloureux" ("tic", meaning 'spasm', and "douloureux", meaning 'painful', in French).
Neuralgia is a form of chronic pain and can be extremely difficult to diagnose. Postherpetic neuralgia is the easiest to diagnose because it follows an obvious cause (shingles).
Neuralgia is rare, especially in those under 30. Women are more likely to be affected than men, and those over 50 are at the greatest risk. In some cases, multiple sclerosis is related to nerve damage, causing the pain, so doctors will likely ask about family history to help diagnose. Nothing unusual can be seen in brain scans, so diagnosis is usually based on the description of the symptoms.
Medication for seizures has shown promise in managing neuralgia, and some people have found relief with surgery, though not always permanent relief.
Atypical Trigeminal Neuralgia (ATN) is a rare form of neuralgia and may also be the most misdiagnosed form. The symptoms can be mistaken for migraines, dental problems such as TMJ, musculoskeletal issues, and hypochondriasis. ATN can have a wide range of symptoms and the pain can fluctuate in intensity from mild aching to a crushing or burning sensation, and also to the extreme pain experienced with the more common trigeminal neuralgia. ATN pain can be described as heavy, aching, and burning. Sufferers have a constant migraine-like headache and experience pain in all three trigeminal nerve branches. This includes aching teeth, ear aches, feeling of fullness in sinuses, cheek pain, pain in forehead and temples, jaw pain, pain around eyes, and occasional electric shock-like stabs. Unlike typical neuralgia, this form can also cause pain in the back of the scalp and neck. Pain tends to worsen with talking, facial expressions, chewing, and certain sensations such as a cool breeze. Vascular compression of the trigeminal nerve, infections of the teeth or sinuses, physical trauma, or past viral infections are possible causes of ATN.
Treatment options include medicines, surgery, and complementary approaches.
High doses of anticonvulsant medicines—used to block nerve firing— and tricyclic antidepressants are generally effective in treating neuralgia. If medication fails to relieve pain or produces intolerable side effects, surgical treatment may be recommended.
Some degree of facial numbness is expected after most of these surgical procedures, and neuralgia might return despite the procedure’s initial success. Depending on the procedure, other surgical risks include hearing loss, balance problems, infection, and stroke. These surgeries include rhizotomy (where select nerve fibers are destroyed to block pain) and Microvascular decompression (where the surgeon moves the vessels that are compressing the nerve away from it and places a soft cushion between the nerve and the vessels).
Some patients choose to manage neuralgia using complementary techniques, usually in combination with drug treatment. These therapies offer varying degrees of success. Options include acupuncture, biofeedback, vitamin therapy, nutritional therapy, hot-cold compress, and electrical stimulation of the nerves.
Neuralgia usually goes undiagnosed or misdiagnosed for extended periods, leading to a great deal of pain and frustration on the part of the patient. This disease has earned the nickname "the suicide disease," due to the unfortunate and drastic steps some have taken when they have been unable to find relief. Patients exhibiting symptoms need to be persistent, and willing to try different doctors to find the help they need.
Sleep deprivation and malnutrition have also been reported as byproducts of the pain. It is possible that there are other triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, stress, and poor diet are examples of additional stimuli that can contribute to the condition. The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition.
Dr. Shankland is a former associate editor of The Journal of Craniomandibular Practice 
Ms. Levy suffered from chronic pain for more than 2 decades. Her book tells the story of her pain and search for relief.