Trigeminal neuralgia has to be one of the worst symptoms that people with multiple sclerosis (MS) experience. A couple of readers have written to me about this symptom and said that there were no words to describe the intensity of their pain. It is one of the types of pain described as “neurogenic pain” or “primary pain,” meaning it is the direct result of the disease process of multiple sclerosis, caused by demyelination and lesions on specific nerves.
What Does It Feel Like?
Trigeminal neuralgia, often called tic doloureux (French for “painful twitch”), is perhaps the most intensely painful MS-related symptom. It can be described most commonly as:
occurring in the lower part of the face (often triggered by chewing, drinking or brushing one’s teeth)
intense, sharp pain
like an electrical jolt
usually the most intense pain is short-lived (from a few seconds to up to two minutes), but can result in a more constant burning or aching
However, it should be noted that it can also have the following characteristics:
extending as far as the ear, and often mistaken for the pain of an ear infection
can be triggered by loud sounds
How Common Is It?
Trigeminal neuralgia is fairly rare, with only 4% of people with MS experiencing this kind of pain. However, people with MS are 400 times more likely than the general population to have an episode of trigeminal neuralgia.
What Causes It?
Trigeminal neuralgia pain can be brought on by chewing or touch. It is caused by lesions on the trigeminal nerve (the fifth cranial nerve), which is the nerve responsible for most facial sensation.
How Severe Can It Get?
Trigeminal neuralgia can get so severe and so distressing that it can require hospitalization and intravenous painkillers. It can interfere with a person’s intake of food and fluids and require that these also be supplemented intravenously. Some people may require surgery for this symptom. However, it is rare that it ever gets this severe.
Due to the intensity of this symptom, anxiety and fear about the possibility of it recurring can cause unnecessary suffering and interfere with daily life, even when the symptom is not present.
Tends To Be Episodic: Each “bout” with trigeminal neuralgia usually lasts a couple of weeks. However, this symptom tends to recur and can happen as often as every couple of months. Some people will go years between episodes of this symptom. Unfortunately, as time passes, time between episodes gets shorter.
Hold Off On the Root Canals: Given the location and nature of the pain associated with trigeminal neuralgia, it is often mistaken for dental pain. This could lead to unnecessary (and irreversible) procedures like tooth extractions, root canals and even procedures to reposition the jaw. Make sure that you see your neurologist if you are experiencing this kind of pain, especially before undergoing any kind of drastic dental work.
Appears Early: Trigeminal neuralgia tends to be one of the first symptoms of multiple sclerosis for those who experience it.
Turkington, C. and Hooper, K. The A to Z of Multiple Sclerosis. Entry on “trigeminal neuralgia.” New York: Checkmark Books, 2005.