Topics covered in this section:

Cranial Nerves Gone Amiss

Characteristics of Trigeminal Neuralgia

How Patients Describe their Pain

What Causes the Nerves to Incorrectly Communicate Pain?

Who Develops Facial Pain?

Similar Kinds of Neuropathic Facial Pain Disorders

Difficulty in Diagnosis

Other (Non-Neuropathic) Kinds of Facial Pain

Cranial Nerves Gone Amiss

TN and other neuropathic (meaning “nerve pain”) facial disorders occur when something has gone amiss with one or more of the 12 pairs of cranial nerves that branch out from the brain stem, just below  and into your skull. Although your body is made up of almost a million nerves, your brain spends almost 30% of its time processing information related to your face. Likewise, due to its rich blood supply and exposure, the face is one of the most sensitive areas of the body. This helps to shed some light on why it can hurt so badly: when a facial nerve, which is a “high priority” to your brain, sends out a message of injury, your brain cannot help but respond vigorously with a strong pain response.

Characteristics of Trigeminal Neuralgia

“Classic” Trigeminal Neuralgia, also called “Typical” or “Type 1” TN, shares the following characteristics, although not every patient has all seven of them. These include:

• Sharp, “jolts” of severe pain, sometimes with burning sensations, followed by periods of no pain.
  
  
• Pain which is confined to areas served by one or more of three branches of the trigeminal nerve, namely the lower jaw, the upper jaw/cheek area and the eye/forehead area, back to the midline of the skull above the ear.
  
  
• Pain is usually limited to one side of the face. There are rare incidences of people who have TN in both sides, known as “bilateral.”
  

 

• The pain is often “triggered” by a light touch to the face or a light breeze; or by other movements such as talking, eating , laughing, or yawning.

 

• The pain seems to run in cycles, even disappearing at times. These times are called "remissions" and may last for weeks, months or even years. Especially in the early stages of developing TN, there may be no obvious reason for either the disappearance of the pain or its later recurrence.
  

 

• The disorder, though terribly painful, does not cause any damage to body systems or structures (such as muscles, tissues, and organs).

 

• It is incurable. Although treatment options are continuously improving, there is no definitive cure for Trigeminal Neuralgia, or for other related facial pains, either.

How Patients Describe their Pain

Patients who struggle with neuropathic facial pain have described it like this:

• “The pain is tearing, shredding, burning, deep pressure pain and/or it is electric in sensation.”
  
  
• “It’s like a miniature lightning bolt has struck my face.”
  
  
• “I feel like I’m being stabbed; or my face is being sawed in half.”
  
  
• “Have you ever had to fly while you had a bad sinus infection and experienced burning, searing pain? It’s like that.”
  
  
• “I feel like my skin, my teeth and my gums are being ripped off.”
  
  
• “It’s like the dentist is filling a cavity without using Novocain.”

NOTE: These kinds of pain can be overwhelming at times. If you or someone you care for is in such terrible pain that there is risk of suicide, please contact your local physician or call the National Suicide Prevention Hotline at 1-800-SUICIDE (784.2433)

How to tell is someone is suicidal? Go to www.suicide.org

What Causes the Nerves to Incorrectly Communicate Pain?

Sometimes there are easy answers, and you may be able to identify the cause. For example, you may have been in a car accident which produced severe whiplash, or the nerve may have been injured during oral surgery.   At other times, a tumor is found to be pressing on the nerve.  Pain may also emerge as a result of the disease “Multiple Sclerosis,” due to MS lesions formed on the nerve.  Sometimes, the nerve becomes squeezed (your doctors will call this “compressed”) between one or more blood vessels which over time wear off the protective myelin coating to the nerve -- much like the rubber casing around an electric wire. For some, however, the reason for neuropathic facial pain is unidentifiable.

Who Develops Facial Pain?

Research indicates that slightly more women than men are affected. However facial pain cuts across all social, economic, racial and cultural classifications fairly evenly. It can occur to someone at any age from early infancy onward, but most typically affects people 50 years or older.

Similar Kinds of Neuropathic Facial Pain Disorders

“Classic” or “Type 1” Trigeminal Neuralgia pain is the most well known facial pain syndrome. It is quite rare, believed to affect approximately 1 per 25,000 people. However, a number of similar facial pain disorders are briefly described below:

• Atypical Trigeminal Neuralgia A type of facial pain that may have some of the characteristics of classic TN (i.e. sharp stabs and trigger points) but also symptoms that aren’t common to classic TN (i.e. constant, aching or burning pain in addition to the stabs). Also referred to as “TN-Type 2.”

 

• Anesthesia Dolorosa Numbness, accompanied by “creepy crawly” sensations. Occurs as the result of nerve damage.
  

 

• Burning Mouth or Gllodynia A burning sensation in the mouth, when not attributed to other disorders, may be nerve-related. It often effects the tongue as well, and is worse in the evening for most sufferers.
  
  
• Deafferentation Pain refers to pain which feels like burning, digging, and pulling in some area of one's face.

 

• Geniculate Neuralgia This pain is similar to TN pain, except that it strikes deep in the ear—an area served by a branch of the geniculate nerve.

 

• Glossopharyngeal Neuralgia Similar to the pain of TN, except that this pain involves the tenth cranial (glosspharyngeal) nerve, and causes pain to the throat, interior to the ear and neck.

 

• Occipital Neuralgia Similar to TN pain, except that this pain is felt in the back of the head.

 

• Post Herpetic Neuralgia A type of facial pain caused by damage from the herpes zoxter (chicken pox) virus. Can occur -- or reoccur --after a bout of shingles.

 

• Spenopalatine Neuralgia or “Sluder’s Syndrome” This pain feels like a headache behind the eye which radiates into the sinus area, the nose, the roof of the mouth, the upper jaw and the palate on that side.

 

• SUNCT, which stands for “Short-lasting, Unilateral, Neuralgiform headaches with Conjunctival injection and Tearing.” This pain feels much like classic TN and is felt in the forehead.

Difficulty in Diagnosis

Getting a correct diagnosis for your facial pain isn’t easy.  People who have facial pain disorders often report that it has taken three to five years and visits to multiple physicians, for them to obtain a correct diagnosis. There are many reasons for this:

(1) The rarity of these disorders means that many physicians will have little experience with identifying these illnesses; many physicians will not see even a single case of trigminal neuralgia in 40 years of practice.

(2) The dissimilarities of the disorders from person to person: Even among people who have “Type 1” or “Typical TN”, the most common form of the most common facial disorder, symptoms may be quite different from person to person.

(3) The mysterious tendency for these disorders to suddenly go into remission: People who suffer with neuropathic facial disorders may experience weeks, months or even years of sudden disappearance of their symptoms; and

(4) The imperfection of diagnostics: Unfortunately, a specific mechanism to reliably identify and differentiate between facial pain syndromes has not yet been discovered.  Diagnosis is still a medical art, dependent upon the experience and knowledge of the examining physician.

Considering the difficulty in accurately diagnosing facial pain, you can see why people suffer for months or years before a diagnosis is made. Unfortunately, sometimes a specific diagnosis can never be made because of the complexities involved. Even when a specific diagnosis cannot be confirmed, however, facial pain can still be effectively managed for the majority of patients.

Other (Non-Neuropathic) Kinds of Facial Pain

Examples of Non-Neuropathic kinds of facial pain include Temporomandibular Joint Disorders (TMD/TMJ); Eagle Syndrome, Earnest Syndrome, Temporal Tendinitis; migraines, myofacial pain, and sinusitis. In these disorders the pain tends to feel pulsating and achy, rather than electric, stabbing and/or tearing and shredding. The pain in these disorders will often be reduced with the NSAID's such as Advil, Tylenol, or with more serious opiate pain inhibitors.  Unfortunately, many patients report that NSAIDS have little effect on their neuropathic pain.  However several anti-seizure and anti-spasmodic medications are commonly used to reduce the pain of neuropathic facial pain, but will usually offer little help to non-neuropathic kinds of facial pain - another difference many physicians will point out. Thus one step in assessing the causes of your facial pain more precisely may be trials with one or more medication types, to determine which seems to offer the best help.