Of all of the pain conditions that chronic pain patients experience, there are arguably none worse than the pain of trigeminal neuralgia. Often called the “suicide disease” because of the intense pain, higher rates of suicidal ideation in patients with severe migraines, and links to higher rates of depression, anxiety, and sleep disorders, trigeminal neuralgia is pain that spreads over the face and down the neck, triggered by even the slightest breath of wind across the face. This condition is commonly misdiagnosed. It’s important to understand what it is, common symptoms, how it’s diagnosed, and trigeminal neuralgia treatment that may work.

What is trigeminal neuralgia?

Trigeminal neuralgia is the general term for pain caused by the trigeminal nerve. It is also called TN pain.

The trigeminal nerve begins just behind the ear on either side of the face and spreads across the cheeks, jaw, lips, and nose. There are three branches of this nerve – the upper, medial, and lower branches. Where the pain is located depends largely on which branch is affected. Rarely, sufferers experience pain on both sides of the face (this is called bilateral trigeminal neuralgia).

Trigeminal neuralgia may be diagnosed as migraine, which affects approximately 16% of people in the U.S.

The American Association of Neurological Surgeons goes on to note that:

“It is reported that 150,000 people are diagnosed with trigeminal neuralgia every year. While the disorder can occur at any age, it is most common in people over the age of 50.”

Trigeminal neuralgia symptoms

According to some people, the pain of this condition is the worst pain that can be felt, worse even than limb amputation or childbirth.  The Facial Pain Association reports that:

“People with TN avoid social contact and daily activities such as eating and talking because they fear an attack. Many have been known to lose their jobs because of the debilitating nature of the pain. Marriages have dissolved due to the difficulty of providing care and support to persons with TN.”

Trigeminal neuralgia symptoms vary and can include:

• T1 or TN1 pain: Short, sporadic, and extreme pain that may only last a few seconds or a few minutes, and that may also include a burning feeling
• T2 or TN2 pain: Constant pain that is similar to T1 pain but is ongoing with no relief
• Sensitivity to light and sound
• Nausea and vomiting

Trigeminal neuralgia symptoms may disappear for a period of time and then reappear. As the condition progresses, periods of remission may shorten, and medication may become less effective.

Pain can be triggered by applying makeup, washing the face, brushing the teeth, or even the slightest touch. However, Mayo Clinic notes the following. We’ll be discussing these specific trigeminal neuralgia treatments later in this post:

“Because of the variety of treatment options available, having trigeminal neuralgia doesn’t necessarily mean you’re doomed to a life of pain. Doctors usually can effectively manage trigeminal neuralgia with medications, injections or surgery.”

What are trigeminal neuralgia causes?

The main cause of this condition is damage along the trigeminal nerve. This could be caused by a facial injury or deep in the brain at the trigeminal nucleus. Other conditions that can damage the trigeminal nerve include:

• Multiple sclerosis
• Scleroderma
• Herpes zoster (shingles)
• Lupus

Some researchers hypothesize that deterioration of the myelin sheath surrounding the nerves may also cause trigeminal neuralgia. If there are no other trigeminal neuralgia causes that can be identified, this may be the most likely explanation.

How is trigeminal neuralgia diagnosed?

As with many similar conditions, much of the diagnosis of trigeminal neuralgia is based on eliminating all other conditions first. MedlinePlus reports that:

“There is no single test to diagnose TN. It can be hard to diagnose, since many other conditions can cause facial pain.”

Doctors will conduct a thorough physical and neurological exam. Patient history will include location and incidence of symptoms and any potential underlying conditions that may have caused the condition. Post-herpetic neuralgia (nerve pain caused by shingles), cluster headaches, and temporomandibular joint disorder (TMJ) have similar symptoms and patterns and will be eliminated as possibilities first.

Magnetic resonance imaging is used to look for a tumor compressing the trigeminal nerve. Other diagnostic tools include a short course of anti-seizure medication or tricyclic antidepressants, a positive response to which may indicate trigeminal neuralgia.

Overlapping symptoms of disorders that cause facial pain make designing treatment challenging, so it is imperative that a proper cause of pain be identified first.

Trigeminal neuralgia treatment

Pain management of this condition is imperative, as pain can be debilitating and deadly. There are many different approaches to trigeminal neuralgia treatment.

Anticonvulsant medication

These medications prevent the nerves from firing and are most effective for TN1. Carbamazepine, oxcarbazepine, topiramate, gabapentin, pregabalin, and clonazepam are a few examples of this type of medication.

Tricyclic antidepressants

Amitriptyline or nortriptyline are often successful at treating the pain of this condition, although how they work is not clear.

Trigeminal neuralgia surgery

There are many different surgical options available to trigeminal neuralgia patients. The success of these depends on the overall health of the patient and any underlying conditions.

• Balloon compression: Balloon compression injures the nerves in the face that can pick up light touch. This makes a patient less likely to feel pain. Results from this procedure can last up to two years.
• Glycerol injection: This injection is delivered directly into the trigeminal nerve center in the brain, damaging the protective insulation of the trigeminal nerve fibers. This procedure can be repeated every one or two years as needed.
• Radiofrequency ablation: This procedure damages the nerve that is causing the pain using an electrical signal. Half of people who have this procedure experience pain again in three or four years.
• Stereotactic radiosurgery: This procedure uses a laser to damage the area where the trigeminal nerve leaves the brain. This causes a lesion to form, blocking pain signals.
• Neurectomy: This procedure cuts superficial branches of the trigeminal nerve so that they cannot transmit pain to the face. Over time these branches may heal causing pain to return.

Another experimental option for trigeminal neuralgia surgery includes opening the skull and wrapping the trigeminal nerve in Teflon. There is significant risk to this procedure, but for some patients it can be life-saving.

Mayfield Brain and Spine has more in-depth information about trigeminal neuralgia surgery options, including current clinical trial research.

Complementary approaches

Complementary treatment approaches to this condition are usually focused on treating chronic pain and other symptoms. They may include meditation, acupuncture, and biofeedback.

For more information on trigeminal neuralgia and its complicated diagnosis and treatment, visit the National Institute of Neurological Disorders and Stroke’s webpage on this condition. Likewise, Memorial Hermann offers an hour long webinar that discusses trigeminal neuralgia symptoms and treatments. 

Note: This post originally quoted suicide rates as high as 25% for this condition, which was based on outdated research. We have since updated the information in this post. 

Imagine a condition where brushing a stray hair off of your cheek causes excruciating and debilitating pain, pain that is unresponsive to pain medication and lasts long after the light touch has stopped. This is a brief glimpse into the mysterious pain of trigeminal neuralgia. Understanding what causes trigeminal neuralgia can lead to a proper diagnosis and successful treatment of pain. Here’s what you need to know.

What is trigeminal neuralgia?

Trigeminal neuralgia is a type of neuropathic (nerve related) pain that stems from the trigeminal nerve. This nerve has three branches that bring sensation to different parts of the face. These include:

1. Upper: Controls sensation in the eye, upper eyelid, and forehead
2. Medial: Sensation control in the lower eyelid, cheek, nostril, upper lip, and upper gum
3. Lower: Responsible for feeling in the jaw, lower lip, lower gum, and inside the mouth

Each branch originates between the end of the lower jawbone and the ear, right where the temporomandibular joint comes together. Trigeminal neuralgia pain is most often felt on one side of the face but can occur bilaterally (on both sides) as well.

Atypical trigeminal neuralgia includes a variety of other symptoms and may coincide with overlapping conditions, such as temporomandibular joint disorder.

An estimated 150,000 people in the U.S. receive a trigeminal neuralgia diagnosis each year. Commonly misdiagnosed as migraine, trigeminal neuralgia may, in fact, affect many more people than previously thought.

Do I have trigeminal neuralgia?

In the early stages of trigeminal neuralgia, trigeminal neuralgia symptoms may be sporadic and fleeting. Because there is no regularity to them, patients may not seek immediate treatment. Shooting pain and spontaneous pain not traced to a particular cause may be the first symptoms that occur. They may disappear as suddenly as they arrive, making a person believe the pain was caused by something episodic (e.g., a sudden movement or slight injury).

Other early trigeminal neuralgia symptoms may include:

• Ear pain
• Nausea
• Fatigue
• Sensitivity to light

These are similar to symptoms experienced by migraine sufferers and may lead to an incorrect diagnosis. When symptoms are treated as migraine pain, they will continue and worsen.

As symptoms get worse, patients may experience episodic pain. This occurs with increasing regularity as patients endure an intense period of pain followed by remission. As nerve damage worsens, so does the pain and periods of remission get shorter.

In some cases, patients begin to experience a constant ache or burning sensation. For patients who do not experience a constant dull ache, increasingly frequent attacks occur. This pain will be unresponsive to any type of pain medication and is uneven in its duration.

Symptoms are different in their onset, severity, and response to treatment from patient to patient due to the cause of the pain and any comorbid conditions that might complicate an accurate diagnosis.

What causes trigeminal neuralgia?

Trigeminal neuralgia is challenging to diagnose because no one thing causes pain 100% of the time in every patient. A potential cause in one person may not produce any pain in another.

However, here are some of the more common trigeminal neuralgia causes:

• Damage to the trigeminal nerve: Any kind of blow or injury to the jaw can potentially damage the trigeminal nerve. This damage can cause excruciating pain while the injury heals.
• Nerve compression: Nerve compression caused by a tumor or other mass of tissue is not the most common cause but does occur in some patients. Tumors can be benign and still press on the nerve, causing pain.
• Multiple sclerosis: Multiple sclerosis causes damage to the myelin sheath, the protective coating on the trigeminal nerve. Once this sheath is compromised or worn, exposing the nerve, pain can occur.
• Scleroderma: Scleroderma is a very rare chronic connective tissue disorder that is classified as an autoimmune condition. Among other symptoms, trigeminal pain can occur in later stages.
• Shingles (herpes zoster): Shingles is a viral infection of the nerves. Common symptoms include a raised, painful rash and, less typically, trigeminal neuralgia pain. Trigeminal pain generally occurs when the shingles rash in located near or on the head, face, or neck.
• Deformity in the arteries and veins: Tangled arteries and veins that become swollen with blood can compress the trigeminal nerve.

What are trigeminal neuralgia risk factors?

Age and gender are primary risk factors, as women over the age of 50 are most likely to develop this condition. Hypertension (high blood pressure) is also a risk factor, as is the occurrence of a stroke.

Excessive or improper dental work can cause neuropathic facial pain, as can surgery on the sinuses.

Finally, any blow or injury to the face (i.e., as a result of a contact sport injury) is a risk factor for trigeminal neuralgia.

What causes trigeminal neuralgia to flare up?

One of the most challenging aspects of trigeminal neuralgia is how sensitive the pain response becomes. Even the lightest stimulation of the painful area can produce lightning bolts of pain across the face.

Some common trigeminal neuralgia triggers include:

• Shaving
• Touching your face
• Eating
• Drinking
• Brushing your teeth
• Talking
• Putting on makeup
• A breeze on the face
• Rising or falling barometer
• Showering
• Smiling (or frowning)
• Increase in blood pressure
• Cold weather
• Drinking alcohol
• Stress
• Washing your face

Oral surgeries and even a regular dental cleaning can also be major triggers, causing some patients to neglect their oral health.

Based on this list of major pain triggers, it is easy to see how trigeminal neuralgia can become debilitating, make everyday life excruciatingly painful.

How to treat my pain

It is important to understand that traditional pain treatments are generally ineffective for this type of neuropathic pain. Why this is so is not well understood, but it is one of the main reasons that people suffering from trigeminal neuralgia can feel hopeless about treatment.

Proper diagnosis is key, however, and there are treatment options that can help you manage and reduce your symptoms.

Trigeminal neuralgia diagnosis

Due to the debilitating severity of pain and its accompanying symptoms, trigeminal neuralgia is sometimes referred to as the suicide disease. Patients who experience this condition have a higher rate of suicide and a greater risk of depression and anxiety. Getting a proper diagnosis is key to treating this disease, and it starts with a complete medical history, including identifying any risk factors.

Other conditions such as temporomandibular joint disorder, cluster headaches, migraine, and post herpetic neuralgia will be ruled out first. In some cases, an MRI looks for tumors pressing on the trigeminal nerve.

Your doctor will also rule out any issues with the sinus cavity, eye conditions, or psychologic disorders. Essentially, absent a visible tumor pressing on the nerve, the process of elimination is what leads to a proper diagnosis.

In some cases, a short course of tricyclic antidepressants or anticonvulsant medication may be administered. If pain responds to these treatments, that may lead to a diagnosis of trigeminal neuralgia.

Trigeminal neuralgia treatments

Trigeminal neuralgia treatments begin most often with medication, but not pain medication. Both over-the-counter and prescription pain medications produce little if any pain relief and are more associated with side effects than analgesic effects. Three types of prescription medications instead – anticonvulsants, antidepressants, and muscle relaxants – are the first line of pharmacological defense for trigeminal neuralgia.

Anticonvulsant options include the following four medications.

1. Carbamazepine

The most common medication for treating trigeminal neuralgia, carbamazepine can help with pain in the earliest stages of trigeminal neuralgia. This medication is also used as a diagnostic test. If carbamazepine relieves pain when administered over a short period of time, this may be a sign of trigeminal neuralgia.

This medication is most effective in the early stages of trigeminal neuralgia, and its effectiveness decreases over time.

2. Phenytoin

Phenytoin is the first medication designed to treat trigeminal neuralgia. Note that there are side effects that may include gum overgrowth, balance issues, and drowsiness.

3. Oxcarbazepine

Oxcarbazepine is a cousin of carbamazepine but comes with fewer side effects. Although patients may experience dizziness and double vision, these side effects are usually mild and manageable.

4. Gabapentin

Gabapentin is an anticonvulsant that is also prescribed for anxiety, restless leg syndrome, and withdrawal from some types of drugs and alcohol. Side effects of this medication include increased hostility, motion sickness, and blurred vision.

Antidepressants

Antidepressants are also commonly used to treat trigeminal neuralgia (although the mechanisms behind how they work is not entirely clear).

Tricyclic antidepressants such as amitriptyline or nortriptyline may successfully reduce or eliminate painful outbreaks. They can also help relieve other related symptoms.

If medication does not relieve pain, more interventional approaches may be needed.

Interventional approaches

If the cause of your trigeminal pain is compression of the nerve, microvascular decompression may help. The microvascular decompression procedure identifies the blood vessel applying pressure and moves it away from the trigeminal nerve. This can decrease nerve sensitivity and give the trigeminal nerve the space it needs to repair itself.

While microvascular decompression can be remarkably effective, opening the skull to perform it comes with substantial risk, including facial numbness and weakness and potential hearing loss.

Lesioning techniques is another category of surgical intervention that can help relieve pain. These include:

• Percutaneous stereotactic rhizotomy: Percutaneous stereotactic rhizotomy uses heat that passes through an electrode and into the trigeminal nerve to destroy the pain-causing part of the nerve and block pain signals to the brain
• Percutaneous glycerol rhizotomy: Glycerol performs the same function as heat to block pain signal transmission to the brain
• Stereotactic radiosurgery (also known as gamma knife): A pinpointed dose of ionizing radiation to the trigeminal nerve roots causes a pain-blocking lesion to form
• Percutaneous balloon compression: A small balloon is temporarily placed in the trigeminal nerve itself, inflated to destroy pain-causing fibers within the nerve

The above lesioning techniques are less invasive than an open surgery, but the effects may not be permanent. All surgeries come with risks, and lesioning techniques are no different. Side effects and risks include lingering soreness, nerve damage, or infection.

Even if pain relief is not as long-lasting, lesioning techniques may be best for patients who are in otherwise poor health, suffer from severe pain, and cannot tolerate a more invasive procedure.

Other treatment options

Experimental treatments using sodium channel blockers are also having some success in treating trigeminal neuralgia related to multiple sclerosis, but this research is in its infancy.

Complementary approaches including biofeedback, firm facial massage (as tolerated), mindful meditation, and acupuncture may also help relieve the pain of trigeminal neuralgia.

If you have more questions about what cause trigeminal neuralgia and how to treat it, get in touch with Arizona Pain today. Our gentle, compassionate doctors can answer your questions and help you get your life back!