What Is Trigeminal Neuralgia?
TN (Trigeminal Neuralgia / tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. By many, it's called the "suicide disease". A less common form of the disorder called "Atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs. Both forms of the disorder most often affect one side of the face, but some patients experience pain at different times on both sides. onset of symptoms occurs most often after age 50, but cases are known in children and even infants. Something as simple and routine as brushing the teeth, putting on makeup or even a slight breeze can trigger an attack, resulting in sheer agony for the individual.
Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. Initial treatment of TN is usually by means of anti-convulsant drugs, such as Tegretol or Neurontin. Some anti-depressant drugs also have significant pain relieving effects. Should medication be ineffective or if it produces undesirable side effects, neurosurgical procedures are available to relieve pressure on the nerve or to reduce nerve sensitivity. Some patients report having reduced or relieved pain by means of alternative medical therapies such as acupuncture, chiropractic adjustment, self-hypnosis or meditation.
What are the symptoms of trigeminal neuralgia?
TN is characterized by a sudden, severe, electric shock-like or stabbing pain typically felt on one side of the jaw or cheek. The attacks of pain, which generally last several seconds and may be repeated one after the other, may be triggered by talking, brushing teeth, touching the face, chewing or swallowing. The attacks may come and go throughout the day and last for days, weeks or months at a time, and then disappear for months or years.
What causes trigeminal neuralgia?
The exact cause of TN is not known. However, certain factors - such as physical nerve damage and stress - can trigger the beginning of the painful attacks. Nerve damage may occur as the nerve passes from the openings in the skull to the muscles and tissue of the face. As the damage compresses the nerve, the nerve cells shed a protective and conductive coating known as myelin. Myelin acts as an insulator. Without this insulation, information from nerves would be transmitted inefficiently. This may result in weakness, sensory loss or other neurologic dysfunction. Damage may also be the result of a biochemical change in the nerve tissue itself or an abnormal blood vessel compressing the nerve as it exits from the brain. In almost all cases, an excessive burst of nervous activity from a damaged nerve causes the painful attacks.
In people without TN, blood vessels are usually not in contact with the trigeminal nerve root entry zone. Though pulsation of vessels upon the trigeminal nerve root do not visibly damage the nerve, the irritation from repeated pulsations may lead to changes of nerve function and delivery of abnormal signals to the trigeminal nerve nucleus. Over time, this may cause hyperactivity of the trigeminal nerve nucleus which results in the generation of TN pain.
Psychological stress can be the cause as well as the outcome of TN. In clinical studies, patients have been known to report TN following major stress like divorce, the death of close family members, a job change, or unhealthy family relationships.
How is trigeminal neuralgia treated?
Medications are the first line of treatment for TN and include drugs such as Carbamazepine (Tegretol??), Phenytoin (Dilantin??), Gabapentin (Neurontin??), and Baclofen (Lioresal??). There is also a controled trial using Lamotrignine (Lamcital??). Many of the medications used to treat TN are those originally designed to treat seizures. The anti-seizure agents in these medications suppress excessive nerve tissue activity. If pain becomes more frequent and severe, increased doses of medications are required. This may lead to intolerable side effects and/or inadequate pain control. Since TN is extremely painful, but not life threatening, the goal of therapy is to minimize the dangerous side effects.
If medications do not adequately control TN that progressively worsens, surgical procedures are considered to be the next line of treatment. The surgical procedures considered may include either microvascular decompression (MVD) surgery; alcohol or glycerol injections into the trigeminal nerves; gamma-knife treatment; or some form of nerve injury procedure (rhizotomies). A neurosurgeon can perform MVD surgery if the doctors can successfully determine the cause of the disorder to be compression of an artery on the trigeminal nerve deep inside the skull.
The major disadvantage to surgery is that it requires a neurosurgical operation — with all its complications — to get access to the root of the trigeminal nerve. The success rates of the surgical procedures vary according to the experience of the surgeon or the anesthesiologist.
What do we know about heredity and trigeminal neuralgia?
The exact role of heredity regarding TN remains unclear. However, estimates suggest that roughly 5 percent of TN patients have a history of other family members who have had the disorder. Familial TN has been noted to be more common in women, mostly in women older than 50 years. This has led to speculation that there is a dominant pattern of genetic transfer.
Clinical Research on Trigeminal Neuralgia
Currently, NHGRI is not conducting studies on trigeminal neuralgia.
Additional Resources for Trigeminal Neuralgia
Insititute of Neurological Disorders and Stroke
NINDS is the nation's leading supporter of biomedical research on disorders of the brain and nervous system. Their Web site contains information on trigeminal neuralgia as well as a fact sheet on Short-lasting, Unilateral, Neuralgiform, headache attacks with Conjunctival injection and Tearing (SUNCT) Headache.
- National Institute of Dental
and Craniofacial Research (NIDCR)
NIDCR's mission is to improve oral, dental and craniofacial health through research, research training, and the dissemination of health information. An article entitled Topiramate in Trigeminal Neuralgia: A Randomized Placebo-controlled Multiple Crossover Pilot Study is available on their site. NIH press releases, background information and reports about oral and facial pain in general are available on NIDCR's Pain (oral,facial) page.
MEDLINEplus, through the National Library of Medicine, has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions.
- Trigeminal Neuralgia
The TNA provides information and offers support to patients living with TN, promotes educational research, and provides critical information to thousands of physicians, dentists and other medical professionals.
Neuralgia Resources (FNR)
FNR is a patient-to-patient resource, intended to be a reference source for individuals with facial neuralgias such as trigeminal neuralgia.
- American Chronic Pain
The ACPA facilitates peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain. They also raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.
- National Organization for
Rare Diseases (NORD)
NORD is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. NORD's Web site contains a page on trigeminal neuralgia.
- Finding Reliable Health
A listing of information and links for finding comprehensive genetics health information online.
Last Updated: February 2006
Articles And Papers
New York Times: Practices: A New Use for Botox: Treating Facial Neuralgia
Harvard Magazine Cover Story: The Science of Hurt
Book Review: "Complementary and Alternative Medicine in the United States"
Reader's Response to the Book Review Entitled "Complementary and Alternative Medicine in the United States"
Author's Response to the Letter Regarding the Book Review "Complementary and Alternative Medicine in the United States"
Painful Choices: Physicians Challenged by Quest to End
At the debate's core is the love/hate affair with the powerful class of pain medications known as opioids
Response by some TNA Medical Advisory Board members to: An open study of botulinum-A toxin treatment of trigeminal neuralgia
FDA Approvals: Angiomax, Lyrica, Zmax
Microvascular decompression for trigeminal neuralgia: comments on a series of 250 cases, including 10 patients with multiple sclerosis
Treatment Options for TN - British Medical Journal
Outcomes and Prognostic Factors
RV Life Magazine. Persistence Pays. Follow-up article.
Dr. Donohue: Nerve malfunction gives rise to dreadful pain
San Antonio Texas Newspaper
to Visit UF as Advocate for Facial Pain Disease
Health and Age.com
Health and Age.com
Health and Age.com
Jacksonville Times-Union, 9-20-04
AARP Article - Rooting Out Pain
Article Review: "Gamma Knife Radiosurgery for Trigeminal Neuralgia:" Shaya M, Jawahar A, Caldito G, Sin A, Willis BK, Nanda A. gamma knife radiosurgery for trigeminal neuralgia: a study of predictors of success, efficacy, safety, and outcome at LSUHSC. Surg Neurol 2004;61:529 -35. Go to first part of Article. Go to last part of Article. Review
Articles From or About the Medical Literature
"Diagnosis and Differential Diagnosis of TN" - Joanna M. Zakrzewska, MD, FDSRCS, FFDRCSI from The Clinical Journal of Pain, 2002.
"Self-Help: Popular, but Effective?" The number of self-help books, organizations, and online support groups has mushroomed in recent years. The range of topics they cover varies -- but their impact is clear. Article linked to by permission from WebMD. Written by Dulce Zamora and includes a short interview with TNA Founder and President Emeritus, Claire Patterson.
"How Can We Evaluate Articles in the Medical Literature?" This is an effort by the creator of this site to help lay readers think critically about outcome studies and other medical information found on line or in print literature. Comments are welcome. We're all learners here.
"Therapeutic Decisions in Facial Pain" is an authorized pre-print of work presented in October 1998 to a meeting of the Congress of Neurological Surgeons at Seattle, Washington. Dr. John Tew, M.D., and Dr. Jamal Taha, M.D. have reviewed ten years of the medical literature, to assess outcomes from a surgical perspective. The work was published in the annual edition of Clinical Neurosurgery for 1999. We are grateful to both authors and to their publisher for permission to present this work for discussion, months in advance of its appearance in print.
"Neurovascular Decompression -- Procedure of Choice?" This paper was also presented to the October 1998 meeting of CNS. Dr Ronald I. Apfelbaum addresses alternatives in surgical treatment for facial neuralgia. Like the article above, the work was published in the annual edition of Clinical Neurosurgery for 1999. We are grateful to the author and to publisher for permission to preprint.
"Choosing Between Treatments for Trigeminal Neuralgia" is a contribution by Red Lawhern, writing as the spouse and supporter of a TN patient. This is a compilation of information from many sources encountered in three years of answering questions from my spouse and other patients. It is based on research in the medical literature and on the Internet. Several patients and professionals have read it and prompted re-write some sections. Some of those who read it have expressed the thought that they wished they had something like it when they were first learning about TN and its treatments. However, the author is not a health care professional: any remaining errors are the author's, not the reviewers'.
Please do not attempt to substitute a reading of articles in any source, for consultations with a qualified professional caregiver: a neurologist, neurosurgeon, craniofacial pain specialist, anesthesiologist, dentist specializing in face pain disorders, or others to whom such caregivers may refer you. If you find something in this archive that seems to contradict the treatment you are receiving, print it and discuss it with your health care provider.
Abstracts from the Third TNA National Conference held in Pittsburgh, PA on October 26-29, 2002. Scientific Presentation Abstracts . In October 2000, the third bi-annual Trigeminal Neuralgia conference was hosted at Pittsburgh PA by the Allegheny General Hospital. The conference featured interactive panel discussions with extensive audience participation. The meetings were supported by a faculty of over 50 medical, dental, and pain treatment professionals from the US and UK and was attended an audience of 300+ patients, family members, and support group leaders.