Trigeminal Neuralgia: The Empowered Patient’s Guide

Imagine washing your face, brushing your teeth or drinking your morning coffee when you are suddenly struck with intense, stabbing, electric-shock like facial pain. Concentrated along your lower face or jaw, the pain can affect your nose, your mouth, or around your eye, with episodes lasting up to two minutes and recurring many times per day.

The pain associated with trigeminal neuralgia (TN) has been described as excruciating. It is the most common form of facial pain and often linked to multiple sclerosis in people under 50.

For people with trigeminal neuralgia (TN), also known as tic douloureux, seemingly innocent activities can bring on extreme pain. The pain, which has been described as “the most excruciating pain known to humanity,”1 can be physically and emotionally draining.  While the lacerating pain may vanish for weeks, months or even years, caught between the unexpected onset of a TN attack and the anticipation of a future episode, it’s hard for people with the condition not to become anxious or depressed. 

Luckily, although TN cannot be cured, in many cases medical and/or surgical treatments can help to alleviate the debilitating symptoms of trigeminal neuralgia.

What Is Trigeminal Neuralgia? The Basics

Trigeminal neuralgia (TN), the most common facial pain condition, is a disorder of the trigeminal nerve or fifth cranial nerve, which carries sensation from your face to your brain.2

About 10,000 to 15,000 new cases of TN appear each year in the U.S., with the condition affecting slightly more women than men. While TN can occur at any age, even infancy, it is most common in those over age 50. In younger individuals, TN disorder is often linked to multiple sclerosis. There is some evidence that the disorder runs in families, likely as a result of an inherited abnormal blood vessel formation. Hypertension, tumors, strokes, aneurysms and simple aging can also be risk factors for TN.3

What Does Trigeminal Neuralgia Feel Like?

“TN pain feels like a hot poker being jabbed in your face,” said Timothy Demchak, PhD, professor of  Applied Medicine & Rehabilitation at the College of Health and Human Services, Indiana State University. “It can be there for a little bit of time and goes away, or it’s constant, depending on how well it’s controlled or how long it’s progressed.”

“A light breeze could trigger it, or it could be someone brushing up against you. It’s just a hot searing pain,” he said.

TN pain has been described by women as worse than childbirth and by men as worse than enduring a broken bone.4 But unlike childbirth or injury, why and when the initial pain appears can prove a mystery. Some people attribute the pain to the follow-up of a car accident, a facial injury or dental surgery, although few physicians or dentists believe that dental work causes TN. In most cases the disorder was already developing, and dental work or an accident may trigger the first symptoms. 

Although pain from TN might be mistaken at first for dental or jaw pain, certain characteristics separate it from pain encountered in the dentist’s chair, including sharp, electric-like spasms. People with TN can experience ten to 50 pain attacks per day, with each lasting from a few seconds to two minutes. And while you may be free of pain between attacks, other people may have a ‘persistent low level of moderate to severe background pain.5

Other defining trigeminal neuralgia symptoms include:

  • Pain concentrated on one side of your face, often around the eye, cheek or lower part of the face (although it can sometimes occur on both sides).
  • Pain described as intense, sharp, or stabbing, that may be accompanied with tic-like cramps.
  • Pain that occurs several days of the week, followed by remission periods during which it disappears. 
  • Pain episodes that worsen and occur more frequently over time.
  • Pain triggered by touch or vibrations.

Causes Behind Trigeminal Neuralgia

What causes TN is unclear, but many experts blame contact between a healthy artery and the trigeminal nerve. This contact spurs inflammation that eventually damages the nerve by stripping it of its myelin sheath, an insulating layer around nerves that allows electrical impulses to transmit signals efficiently and quickly along nerve cells. Myelin damage can lead to increased electrical activity in the trigeminal nerve, which in turn triggers the pain regions of the brain.6

Less frequent causes of TN include a tumor that presses on the trigeminal nerve, multiple sclerosis, which causes the myelin sheath of the trigeminal nerve to deteriorate, an abnormality in blood vessels in the brain, normal aging or stroke. 

In some instances no underlying cause can be determined.

Trigeminal Neuralgia Diagnosis: It Gets More Complicated

Since there is no specific test to determine if you have TN, getting a diagnosis can take time. But understanding the source of your pain can be vital, since treatments for different types of facial pain may differ. To reach a finding your primary doctor, neurologist, neurosurgeon and/or oral surgeon will listen carefully to your description of symptoms, take a detailed medical and family history, and give you a thorough neurological examination. 

To help exclude other diagnoses, your doctor may also order an MRI or CT scan to ascertain that you don’t have a tumor pressing on the trigeminal nerve or other medical problems that can cause TN.  Since it’s difficult to see a blood vessel pressing against a trigeminal nerve in a ‘routine’ MRI, facial pain experts may also order a MRI(3T) to minutely examine the trigeminal nerve or supply a more detailed picture of brain or blood vessels. This more precise scan can often locate a problem in people who may have been told that they have a normal MRI.  

Once a diagnosis of TN is reached, you may be told that you have one of three types of the disorder:

  • Classical, which involves a compression of the trigeminal nerve
  • Secondary which may be related to an underlying disease, including normal aging, tumors, trauma, viral infection or multiple sclerosis (MS)
  • Idiopathic, where no cause can be found

While all types cause with facial pain, in some cases–such as TN caused by MS–pain may appear on both sides of the face.8 People with Secondary TN may also experience a more constant, moderate-to-severe level of background pain along with more severe strikes of pain.

What Else to Expect When Living With Trigeminal Neuralgia

Living with TN can be very difficult. Chronic repetitive and unpredictable shots of stabbing pain can leave people isolated, vulnerable to depression and anxiety, and–in some extreme cases–even considering suicide. You may find yourself unable to perform daily activities, concentrate on work or participate in social interactions. Sleep disorders, high rates of fatigue, and high catastrophizing scores which can be connected with the fear and unpredictability of the condition, can upend daily life. Some people even develop anorexia, fueled by the fear that chewing and eating might provoke a pain episode.7

While TN pain tends not to interrupt sleep, psychological disorders such as depression and anxiety sparked by the condition can lead to sleep disturbances. 

In one study, people with TN were almost 3 times more likely to experience a depressive disorder than people without the condition. Hypertension, diabetes mellitus, dyslipidemia and chronic pulmonary disease were more prevalent in people with TN than those without the condition.8

How to Treat Trigeminal Neuralgia 

Medications

Medications can help to relieve trigeminal nerve pain, but their benefits can decrease over time. Because many of the medications work by slowing down the electrical conduction of pain, they can also affect thinking and walking, as well as making you drowsy. You should keep your doctors aware of any negative side effects from your medication and if the medication type or dosage is working–or not. 

“We don’t know why medications don’t work for everybody,” Demchak said. “Sometimes, meds may work for a while and then stop. It’s possible that in some cases, the drugs may not be working on the mechanism that’s causing the nerve pain to happen and in that case, they may not be able to do the job.”

Common medications include:9,10

  • Anti-convulsants.  Carbamazepine (Tegretol) and oxcarbazepine (Trileptol) are often first-line drugs for TN treatment. Many physicians believe that relief of facial pain from Tegretol confirms a diagnosis of TN. Tegretol can provide at least partial pain relief for up to 80 to 90 percent of people. Other anti-convulsants include lamotrigine (Lamictal) phenytoin (Dilantin, Phenytek). Clonazepam (Klonopin) and gabapentin (Neurontin, Gralise, others). A muscle relaxant bacolofen (Lioresal) can be prescribed, either alone or with other drugs. Many of these drugs lose effectiveness over time, requiring higher dosages or different combinations of drugs to be taken together.

    Side effects of anticonvulsants may include dizziness, confusion, drowsiness and nausea.  Carbamazepine can trigger a serious drug reaction in some people, mainly those of Asian descent, so genetic testing may be recommended before you begin to take the drug.
     
  • Botox injections. Several small studies have shown that onabotulinumtoxinA (Botox) injections may reduce pain from trigeminal neuralgia in people who are no longer helped by medications. In these studies, Botox injections to trigger zones seems to provide rapid pain relief with minimal side effects. One study showed that 90 percent of people receiving botulinum toxin showed improvement.  However, additional research needs to be done before this treatment is widely used for this condition.11

Surgical Treatments

All surgical options present risks and benefits, as well as different success rates and indications for patients. These should be carefully considered to determine the most appropriate procedure for each situation.  While neurosurgical procedures for TN have shown clinical benefit in almost 60–90% of cases, they may be followed by complications or eventual return of pain.12

Among the procedures available: 

Microvascular Decompression (MVD). The most invasive of surgical options to treat TN, MVD has a long-term success rate of 80 percent as a stand-alone treatment for TN. During the procedure, a surgeon makes a small incision behind an ear, drills a hole in the skull, then – with the help of microscopic visualization – moves the blood vessel or vein compressing the trigeminal nerve and inserts a small Teflon felt cushion to keep the two apart.  Typical risks can include infection, excessive bleeding, risks from anesthesia and spinal fluid leaking, and the possibility of hearing loss or stroke.

Ablative methods, which include balloon compression, glycerol injection and radiofrequency lesioning. These procedures are designed to interrupt pain signals by destroying the nerve. Pain relief was reported in 90% of people who underwent these procedures, but after five years, pain returned in 50%.  While all three therapies are considered safe, there is a 50 percent chance of sensory loss. 

Radiosurgery (GammaKnife,CyberKnife).  Using highly focused beams of radiation that injure the nerve and disrupt pain signals to the brain, these noninvasive procedures are performed on an outpatient basis. It can take several weeks for pain relief to occur after radiosurgery and the procedures have a high rate of pain recurrence when compared to MVD. Facial numbness can also be frequent complication.

Complementary and Alternative and Therapies (CAM)

As with traditional medical treatments, the effectiveness of all CAM treatments depends on several factors, including the person’s state of health and the skill and knowledge of the practitioner. Each person will respond differently, and even though most of these remedies are non-invasive, they still may carry potential risks and complications. 

While some people claim to have found pain relief with some of these options, such as medical marijuana or acupuncture, in many cases there is not yet enough research to access their efficacy. 

You should consult with the doctor you rely on the most for treating your facial pain before trying any of these treatments. None are not intended to take the place of first-line treatments. (Note: Recreational marijuana is not medical marijuana and is not legal everywhere.)

  • Acupuncture. An ancient Chinese practice based on inserting very fine needles through the skin into targeted points of the body. A few studies have appeared to show individual success in reducing TN pain with acupuncture, but additional and wider examination is needed.13
  • Capsaicin.  Topical application of capsaicin, the pungent component of red pepper, over painful areas showed promising results in some clinical studies. . In one paper, of twelve people who received topical application over painful areas three times a day for several days, 6 had complete and 4 had partial relief of pain. More and larger studies are needed.14,15
  • Electrical Nerve Stimulation. Neurostimulation might represent an opportunity in patients who do not respond to other surgical treatments, but further studies are needed.16
  • Medical Marijuana. Growing evidence suggests that medical marijuana may be effective in alleviating neuropathic pain, making it a potentially valuable treatment option for TN. One 2019 study of 42 people found that 81% of patients reported improvement in pain relief.  While medical marijuana may be a useful part of a larger pain management plan, more studies are needed.17

Other complementary or alternative therapies to try:

  • Biofeedback
  • Homeopathy
  • Nutritional therapy
  • Upper cervical chiropractic procedures
  • Vitamin B-12 Injections
  • Vitamin Therapy

Why Your Mental Health Matters When Living With Trigeminal Neuralgia

Studies show that mood disorders can be improved when pain is relieved or reduced, which can result in improved quality of life. But if you still notice difficulty in managing your mood or anxiety, coping with pain, or changes in your ability to function in day-to-day life, people with TN might benefit from seeing a psychologist, says  Alison Vargovich, PhD, assistant professor in the Division of Behavior Medicine at the University of Buffalo, SUNY, New York.

“People dealing with chronic pain notice significant changes in many areas of life,” said Vargovich, “which can impact interests, hobbies, work, and relationships. Pair these changes with friends and family not understanding what chronic pain is or how it works, and this can translate into relationship issues.” Friends, family, and partners may be at a loss on how to support a loved one, or can feel disconnected from relationships and begin to withdrawal. 

The extreme pain of TN can also make people begin to see themselves as “primarily helpless, dependent and as a person who is seen only in terms of pain,” noted Lessa Morrow, PhD, during a recent conference presentation for the Facial Pain Society. This vision can lead to ‘catastrophic thinking’ where people with TN live “trying to avoid the next horrible thing that’s going to happen and often overstating the likelihood of negative events,” Morrow said. Partners can be swept into this negative way thinking as they work to help you avoid pain triggers or share your preoccupation with trying to avoid pain. 

“While it’s natural that the unpleasant experience of pain causes negative thoughts, avoiding catastrophic thinking is not as easy as just thinking positively,” said Dr. Vargovich. Instead, she recommends several strategies that can help reduce negative appraisals of pain by focusing on changing your reactions to pain. These include:

  • Learning how to modify unhelpful thoughts.
  • Reducing psychophysiological reactions
  • Addressing individual challenges related to managing chronic pain. 

Chronic pain may require modifications in activity, but allowing well-meaning partners to begin helping more with daily activities to allow their loved one to rest can add to the problem or lead to feelings of resentment.  Both experts suggest that when it comes to activity, it’s better for patients with chronic pain to remain as active as possible. 

“This may mean taking frequent breaks, allowing for more time to complete tasks, and modifying aspects of a task that aggravate pain,” said Dr. Vargovich. “Patients need to learn the difference between ‘hurt vs harm’—meaning that just because something hurts, it does not mean you are injuring or harming the body. Understanding this difference, can help patients reduce negative appraisal of pain.”

 Partners can be helpful by asking more specifically what their loved one may need assistance with and encouraging them to remain as active as possible (e.g., bring the laundry upstairs, but allow partner to fold it). 

“Do not become helpless,” said Dr. Morrow. “Do not allow your partner to do routinely for you what you can do for yourself.”

Trigeminal Neuralgia Self-Care

What Can I Do Now? 

While you can’t control facial pain on your own, you can work with your care team to find the best treatments for your individual condition. Becoming as knowledgeable as possible about your individual case in terms of medications, breakthrough pain, side effects, surgical choices, and mental health issues can put you more in charge of your care. 

You may also want find a support group online (see below) of other people who share TN. Having a safe space to vent and compare experiences may boost your mental outlook and relieve some of the isolation that can come with chronic pain.

Maintain a healthy lifestyle

“While no scientific evidence exists that TN is helped by a special diet or by avoiding certain foods, staying healthy can reduce your vulnerability to pain,” said Dr. Leonard Goldstein, DDS, PhD, the assistant vice president for clinical education development at A.T. Still University (ATSU) in Arizona.

Dr. Goldstein added that while many casual stimuli trigger facial pain, exercise does not, so keeping up a regular program may also help stave off depression. 

While no particular diet will help alleviate TN pain, eating healthy foods, exercising and aiming for a good night’s sleep will help you be less vulnerable to the stress of TN pain, he said.

Keep a pain journal

A journal that chronicles your journey with TN can help you and your care team better focus on symptoms that may need attention. Among possible topics for inclusion:

  1. What does your pain feels like? Is it sharp, shooting, aching, burning or something else
  2. Where your pain is located? Lower jaw? Cheek? Eye? Forehead?
  3. Is it accompanied by other symptoms, such as headaches? Numbness? Facial spasms?
  4. What is the duration of your pain? Weeks? Months? Years?
  5. How long are your pain free intervals? 
  6. What is the severity of the pain on a scale of 1-10?

Along with your journal, it can help to jot down a running list of notes and questions for your doctor visits. Note any new triggers of pain (brushing teeth, touching your face, cold air).  Make current medications including how they are working, dosages for breakthrough pain, and any side effects.  

Having Those Hard Conversations

Educate yourself about your condition and be persistent about asking questions. While TN has been identified for many years, new treatments are scarce. Different therapies will work with different people but knowing what helps you is vital.

Carefully choose doctors who are both qualified and sympathetic to your pain condition. This is particularly important if you choose a surgical procedure. Make sure that your surgeon is an expert in the procedure and that they have done a large number of the procedures. If you feel a neurologist is moving you from one medication to another without perceptible benefit, speak up to see if it might be the right time to try surgery.

FAQs

I’ve had trigeminal neuralgia. How can I prevent it from happening again?

Experts don’t know how to prevent trigeminal neuralgia. You may learn to avoid certain activities that seem to trigger the pain more than others. While the condition can go into remission for months or even years, there is no guarantee that it will not recur again. In the meanwhile, staying healthy as possible both physically (exercise, diet and sleep) and emotionally (talking in a support group or to a psychologist specializing in pain) can help you deal with the stress of the condition. 

Will I need surgery to treat trigeminal neuralgia?

The first line treatment for most people with trigeminal neuralgia is an anti-convulsant medication. While some people can get pain relief from a medication, for others the progressive nature of the disease means that dosages will need increasing or drugs will cease working. Medications also have a number of unwanted side effects. In some of these cases, surgery may be a viable option. It’s important to remember that all surgical options present risks and benefits, as well as different success rates and indications for patients, that should be  carefully considered to determine the most appropriate procedure for each situation. 

Will lifestyle changes help treat or prevent trigeminal neuralgia?

While eating a healthy diet, getting regular exercise and having a good night’s sleep will help you deal with the issues of chronic pain, none of these changes will treat or prevent trigeminal neuralgia. Although not life threatening, the condition is caused believed to be caused by a physical condition that requires medications to block pain or surgery to prevent pain signals from being transmitted to the brain. 

I have multiple sclerosis. Am I at risk of trigeminal neuralgia?

According to a recent study, trigeminal neuralgia affects 15% of individuals before the diagnosis of MS and the prevalence of trigeminal neuralgia increases with disease duration and disability. If you think you have the facial pain symptoms of TN, you should check with your doctor, since MS can be one cause of TN. In younger patients with extreme facial pain, the condition may be a sign of MS.

 

Updated on: 07/20/21
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