Tic, Tic, Tic Douloureux

The Mysterious—and Frustrating—Condition of Trigeminal Neuralgia

By Ruth Werner
[Pathology Perspectives]

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.

What Causes Trigeminal Neuralgia?

Readers will remember that most of our neurons are covered by a layer of material called myelin, which serves to speed transmission and to provide electrical insulation to individual axons. In the peripheral nervous system, the myelin sheaths of the trigeminal nerve are constructed of Schwann cells that are strung like beads along the individual neurons. But as the fibers approach the brain, their covering changes from Schwann cells to the oligodendrocytes that provide myelin in the central nervous system. In this transition area, the myelin is thinner than in other locations and vulnerable to damage
Physical damage to the trigeminal nerve as it approaches the pons appears to be a factor in the symptoms of TN—sometimes. Small arteries inside the skull may compress a vulnerable portion of the trigeminal nerve in a phenomenon called neurovascular conflict. This can be identified in MRI tests with good accuracy and specificity.
When neurovascular conflict is present, the artery irritates the nerve and wears away at the already-thin myelin covering in the transition area. This in itself can be painful, but it also creates a situation where adjacent neurons in the trigeminal nerve now lack electrical insulation. The consequences of this situation can be dire; I will paraphrase one expert’s description here: Pulsations of the arteries on the nerve’s root entry zone causes demyelination of axons. This allows for the abnormal generation of spontaneous impulses and their conduction to adjacent fibers, leading to a rapid buildup of electrical activity. The result is a paroxysmal explosion of symptoms2 (emphasis mine).
But neurovascular conflict is not a complete explanation of TN, for these reasons:
• Neurovascular conflict is found in only about half of people with TN symptoms.
• Neurovascular conflict doesn’t always cause demyelination.
• TN pain persists in about 30 percent of patients after neurovascular conflict is surgically corrected.
• Neurovascular conflict is frequently found during autopsies of people who never reported TN pain.
Clearly more is going on than meets the eye. It is possible that trigeminal nerve compression happens at more than one location, so correcting it in one spot doesn’t solve the problem. It may be that changes in cerebral perfusion—the amount of blood flow through local cerebral arteries—influences pain signals. We know that injured nerves in the peripheral nervous system can become inflamed and compressed at multiple locations—this is sometimes called multiple crush syndrome. It seems reasonable that the trigeminal nerve might also be vulnerable to this phenomenon. And living with the threat of unpredictable bouts of breathtaking pain inevitably has an effect on mood states, which can exacerbate pain awareness. TN may also cause structural changes in the central nervous system that lead to increased numbers of pain-related receptors and higher levels of pain-related neurotransmitters; this is central sensitization.
This sequence doesn’t happen to everyone, but it can be a factor in chronic pain syndromes for patients who have TN and many other conditions.

“I have a list of coping skills. When things feel overwhelming, I take a walk. I write a letter. I call a friend or family member. I do five minutes of yoga. I get up and move, listen to music, or play the guitar. Mainly, I give my mind something to do.” —SF

Treatment Options

Conventional treatment options for TN typically begin with medication, then may progress to interventions that destroy part of the trigeminal nerve, or microvascular surgery.
The first-line medications used to treat TN are sodium channel blockers. These interfere with nerve cell excitability. They can dull the pain of TN for some patients, but the side effects can be severe, and many people find they cannot tolerate the drugs.

“At its peak, I was having up to 40 attacks per day. Tegretol helped, but it made me feel like the stupidest person in the world, and tired, and hungry all the time—I didn’t like the effect at all. But it made the flashes less intense. I stayed on it until my surgery.” —SF

A rhizotomy is a procedure designed to damage segments of the trigeminal nerve. This can happen in a number of ways, including balloon compression, glycerol injection, radio frequency thermal lesioning, or stereotactic radiosurgery (“gamma knife” surgery). These interventions are done under anesthesia with low risk of complications. They lead to long-lasting numbness or paresthesia, and they typically yield good results for one or two years, and then TN symptoms return.
Microvascular decompression is the most invasive treatment option, with the highest risk of complications, but it also has the longest effect. About 70 percent of people with TN symptoms and neurovascular conflict (as confirmed by MRI imaging) have pain relief for five years or more following microvascular surgery. In this procedure, the surgeon cuts a hole in the temporal bone behind the ear. Then, the surgeon moves the artery and places a Teflon cushion to protect the trigeminal nerve.

“After my surgery, I had two horrible days, and then wonderful relief. That was five years ago. Now the tingling is getting worse, like a thousand tiny needles in my face, and I’m having twinges once a week or so. I know I might have to go back to see what to do next.” —SF

Other options for TN treatment include acupuncture, biofeedback, mirror therapy, and stress-management techniques. None of these have a strong evidence base, but they are helpful for some people.

What About Massage Therapy?

Stress management is a challenge for people with TN. Massage therapy helps with stress management. However, no research articles, case reports, or other rigorous analyses of the potential for massage to harm or help people with TN have been published, at least where I could find them.
We don’t have evidence to declare that receiving massage might decrease the severity or frequency of TN episodes, but with care it seems reasonable to propose that our work might improve the quality of life of people with this condition in other ways. My interviews with people who have TN suggest that massage therapy could be helpful for mood, a sense of self-efficacy, and musculoskeletal holding or guarding patterns that might cause pain or interfere with best function. And because TN carries some risk of complication to central sensitization and chronic, self-fulfilling pain responses, anything that can turn down the volume on pain and fear is likely to have a positive influence on this condition (Image 2).
All of that said, of course it is vital to conduct massage in a way that does not elicit TN symptoms. Because each person’s experience is unique, that might mean adjusting positioning to avoid the face cradle for some clients and avoiding touch to the face altogether for others. This must be guided by the needs and tolerance of the client and cannot be predicted for all people with TN (Image 3).
The drugs used to treat TN often have significant side effects in the form of fatigue and lethargy, and we want to be sure that our massage doesn’t exacerbate those problems. Another accommodation has to do with lingering facial numbness or other neurological signs that may occur after surgery or rhizotomy treatments. These may leave patients with permanent facial paresthesia or numbness. This doesn’t fully contraindicate massage therapy, but it does require increased caution, since signaling from the affected tissues will be limited.
Massage therapy is unlikely to “fix” the situation for clients who have unpredictable sharp, shooting, electrical zapping pain on one side of the face. But it could be a way to cope with the stress, guarding, and fear that is likely to accompany this challenging disease. If you have clients who have TN, I hope what you found here will help you work with curiosity, compassion, and confidence to see what you can contribute to their quality of life.

“You know, the universe will let me be as miserable as I want to be. I choose NOT to be miserable. Some days it’s harder than others. But the great thing is that every day is a new start. I’m optimistic!” —SF


1. Bruce Blaus, “Trigeminal Nerve,” August 3, 2017, Illustration, https://commons.wikimedia.org/wiki/File:Trigeminal_Nerve.png.
2. Emilio Lozupone et al., “Imaging Neurovascular Conflict: What a Radiologist Need to Know and to Report?,” Text for ECR Poster (March 3, 2012), http://dx.doi.org/10.1594/ecr2012/C-1933.


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Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist’s Guide to Pathology (available at BooksofDiscovery.com), now in its seventh edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com or wernerworkshops@ruthwerner.com.