Expanded version of a Periodic Posting in:
sci.med, sci.med.dentistry, sci.med.nursing, alt.support.depression
Information Current: February 2002
R.A. "Red" Lawhern, Ph.D.
Author and former webmaster for the
Trigeminal Neuralgia Association Homepage
This note describes symptoms and identifies resources for treatment of a rare neurological disorder called "Trigeminal Neuralgia" ("TN"), often characterized by incidents of intense, stabbing pain in one side of the face. A companion note addresses TN in the larger context of a Practice Model for Diagnosis and Treatment of Face Pain.
This posting is to alert doctors and patients to the availability of resources for diagnostic assistance and treatment of a category of chronic, severe facial or head pain. Please share this information with medical colleagues and chronic pain sufferers.
Trigeminal Neuralgia, also called Tic Doloreux, is a neurological disorder affecting one or more of the three branches of the trigeminal nerve in the face and head. It has been estimated that approximately 15-25,000 new cases occur in the US each year, making it one of several "rare disorders." Given the difficulties that patients experience in obtaining diagnosis, and the high traffic levels observed on the TNA Homepage (>500 visitors per day) this historical estimate is almost certainly low.
In early stages, before symptoms develop fully, TN is often mistaken for other diseases or dental problems. When it first emerges suddenly, TN is frequently misdiagnosed as dental abscess. Likewise, some patients experience "atypical" trigeminal neuralgia, with a more constant, throbbing pain at generally lower level of intensity. The rarity of these disorders and variability of symptoms have caused some patients to be subjected to multiple root canals or other dental or sinus surgery before a neurological disorder is recognized.
As indicated in many medical journal articles, typical trigeminal neuralgia is characterized by sudden, severe, "electric shock-like", lancinating pain in the face, often localized to a few highly sensitive trigger points. These zones react to very slight stimulus -- a change of temperature, draft, touch of a scarf, talking, brushing teeth can set off an attack. The attacks last from seconds to minutes but may occur in repetitive volleys which extend over several hours. Less typical pain patterns can also occur, with protracted periods of aching, burning pain on one side of the face, or at different times on both sides.
Pain usually affects one side of the face in regions between the lower jaw to forehead and skull above the ear. In some patients, the eye, ear, or palate may be affected. In many patients, attacks are less frequent at night or when lying down. Onset of symptoms is most common in persons aged 50-60, but can occur at any age, including infancy. The disorder is slightly more common in women than in men.
Pain often begins intermittently, with periods of months or sometimes years between attacks. "As the patient grows older, periods of remission are shorter and attacks more severe. Spontaneous recovery is extremely rare." [reference: "Trigeminal Neuralgia: A Personal Review and Nursing Implications", Dorothy J. McConaghy, Journal of Neuroscience Nursing, April 1994].
The so-called "atypical" form of trigeminal neuralgia produces less well defined symptoms. Some patients experience burning or aching which extends over longer periods of time, most often in one side of the face or forehead. Less is medically known about the causes of atypical TN pain. Patient reports and some medical literature articles suggest that "atypical" TN may comprise a stage in the progressive development of "typical" TN. This form of face pain is also so wide spread as to call into question the use of the term "atypical." In any event, ATN can be difficult to distinguish from other medical problems such as cluster headache, migraine, nerve injury (neuropathy), sinus or dental problems. Likewise, surgical treatment is generally less effective in resolving atypical pain patterns.
Glossopharyngeal neuralgia (GN) is a potentially related neurological disorder that causes pain in the palate, ear and throat, with difficulty swallowing. Some patients complain of a burning sensation or a feeling similar to having a fish bone stuck in the throat. GN appears to be caused by a similar mechanism to TN - compression of a nerve by blood vessels in the brain - but it affects a different nerve.
The Trigeminal Neuralgia Association was founded in 1992 in Barnegat Light, NJ. The Association has recently relocated to Gainesville FL. A home page is available at http://www.tna-support.org/. This site describes the work of the Association and provides access to treatment-related articles from TNA's periodic newsletter and elsewhere in medical literature. Original articles are being developed and proceedings of three major TN conferences are also posted to the site.
The Trigeminal Neuralgia Association has established an email address at firstname.lastname@example.org A patient representative is on staff to the Association, and may be reached at TNAinfo@aol.com. If you write or email to request information, please provide your name and a surface mail address where you can receive hard copy materials.
The Association has developed brochures and materials for physicians and dentists, with descriptions of symptoms seen in TN patients. Articles are also available for patients interested in treatment alternatives. These materials may be particularly useful to practitioners who do not treat chronic pain as a specialty, or who feel that their training on neuralgia is no longer current. Early recognition and accurate diagnosis contribute greatly to effective management of this disorder. The Association charges a small materials fee to recover cost of production and mailing.
The work of the Association is guided by a Medical Advisory Board. Names, phone numbers (and in most cases email addresses) of Board members are provided at: TNA Medical Advisory Board.
Patients diagnosed with TN should be aware that there are several avenues for successful medical and surgical treatment of this painful condition. Many patients gain total cessation or significant improvement of pain, although for other patients symptoms may recur. If TN is suspected, your primary care physician may choose to refer you to a neurologist. MRI or CT scan are frequently used to rule out tumor or multiple sclerosis as causes for pain. Drug treatment for early stages of the disorder is often effective for long periods; however some drugs of choice may create side effects that must be actively monitored, particularly if dosage is high. Several surgical procedures exist, each with advantages and disadvantages which depend on the nature of the patient's pain as well as age, general health, work situation, personal objectives and treatment concerns.
If you are experiencing an onset of sharp, electric-shock facial pain on one side of your face, then you may wish to ask your dentist whether a neurological problem such as TN might be indicated, before proceeding with dental surgery or a root canal. This is particularly true if X-ray evidence does not clearly indicate a dental abscess. Other diseases and disorders can also produce similar symptoms and may benefit from consultation with an internist or other specialist. In all cases, be guided by your family physician and dentist. If your practitioner is unable to provide information on TN or ATN, your next line of local inquiry may be through the Patient Affairs office of a local hospital, or at a chapter of the American Medical Association.
If you have explored local resources without result, then send email or visit the Trigeminal Neuralgia Association home page to obtain TNA's phone and surface mailing address. Telephone lines are often busy. Please be aware that this Non-Profit Organization is struggling to keep its head above water, with a small staff answering hundreds of phone calls and mailing hundreds of information packets every month. At present, the Association's email link is monitored about once per day in the early morning. Every effort will be made to help you in a timely manner. The Association is staffed by people who have experienced this pain personally or seen it closely in family members. Please consider a contribution to help defray costs.
By comparison to widely known ailments, trigeminal neuralgia affects relatively small numbers of people. Many physicians will never see a case in thirty years of practice. The disease doesn't directly kill. It merely makes some of us wish it did, creating a profound loss of personal quality of life that may result in depression. Many people do find relief from pain, but no single treatment or combination of treatments works for all patients. Even patients who experience total remission may find that pain re-emerges months or years later. TN patients are on lifetime probation. For these reasons, it is very important that TN patients and their families cultivate close and supportive connections with others who have experienced and who understand this disorder.
The Association began in 1999 to build and populate a useful TN patient register and to conduct a national outcomes assessment survey. Data and patient mailing lists are accumulating. A coordinated, multi-part patient questionnaire was mailed to over 10,000 pain patients known to TNA, and an on-line web site has been announced. Over 3500 surveys have been collected and entered in the database, and work is beginning to analyze results. There is a continuing need for data entry volunteers to capture and log the volume of data pouring in. Follow-up interviews will also be needed by telephone. If you are familiar with this disorder and have a few hours per week to assist in this project, please send email to The Trigeminal Neuralgia Association.
The TN patient register is one element of a long term challenge. However, pain patients have near-term problems concerning treatment standards. Basically, there is as yet no generally accepted standard for diagnosis, treatment and long-term follow-up for face pain other than migraine headaches. Various medical practitioners have reported success for specific drugs or surgical procedures in limited populations. However, when approached by patients in person, many physicians tend to advocate their own procedure of choice, to the exclusion of others. Particularly for Atypical TN, the physical causes of pain are still not well understood. The result for TN patients is often a sense of confusion concerning alternatives in medical or surgical treatment, and prospects for positive outcomes.
During the four years when I was webmaster for the Trigeminal Neuralgia Association, I corresponded with hundreds of physicians, patients and family members, seeking answers for face pain. Although I am not a licensed professional caregiver, I read the medical literature widely in areas that relate to chronic face pain. I am determined to see the emergence and acceptance of better standards of care than patients frequently report to me. To promote this end, I am now researching and writing a paper in layman's language, tentatively titled "A Proposed Practice Standard for Diagnosis and Treatment of Face Pain." As soon as this work is ready for review, it will be self-published and announced from this page. People who are affected by chronic face pain are welcome now as in the past, to write with questions or to share their own experience, as this work continues. My email address is email@example.com.
Sincere well wishes,
R.A. "Red" Lawhern, Ph.D.