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
- Herpes zoster (shingles)
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.
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.
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 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.