Trigeminal Neuralgia: A Care Staff Guide to Severe Facial Pain

Imagine being afraid to smile, eat, wash your face or brush your teeth because any of them might trigger a jolt of agonising pain. That is daily life for many people with trigeminal neuralgia. It is a rare but severe condition that is often hard to diagnose, and staff who understand the triggers can make a real difference to comfort, nutrition, hygiene and mood.

What does trigeminal neuralgia feel like?

According to the NHS, trigeminal neuralgia causes sudden, severe, sharp, shooting facial pain, often described as excruciating, like an electric shock. An attack can stop a person doing anything. Each attack lasts from a few seconds to about two minutes, and afterwards there may be a mild ache or burning. Some people also have a constant throbbing, aching or burning feeling between attacks. The pain usually affects one side of the face, most often the teeth, upper or lower jaw or cheek, and less commonly the forehead or eye.

Episodes can last days, weeks or months, and remission, when the pain disappears, can last months or years. In severe cases, attacks may happen hundreds of times a day with no remission.

Common triggers

The NHS lists a wide range of triggers, including talking, smiling, chewing, swallowing, kissing, brushing teeth, washing the face, shaving, applying make-up, light touch, cool air or air conditioning, head movements and vibrations such as walking or travelling in a car. Pain can also occur with no trigger at all. Ordinary care tasks are therefore potential triggers, so personal care needs careful planning.

Impact on daily life

The NHS notes that people may avoid eating, washing or social activities to prevent pain, that undernourishment or dehydration can make pain worse, and that repeated pain can lead to depression and, in extreme cases, suicidal thoughts. For care staff, this means that weight, fluid intake, oral hygiene, skin care and mood all need watching. Our guide to depression screening in older adults explains how to notice changes in mood in care settings.

How is it treated?

The NHS explains that paracetamol does not work for this pain, so people are usually prescribed an anticonvulsant, a type of medicine also used for epilepsy, which slows the nerve signals that carry pain. Carbamazepine is the first choice and is currently the only medicine licensed to treat trigeminal neuralgia in the UK. It is started at a low dose and increased slowly, and it can become less effective over time. Side effects include drowsiness, dizziness, memory or concentration problems, confusion, unsteadiness, nausea, double vision and skin reactions. Serious risks include Stevens-Johnson syndrome, thoughts of self-harm or suicide, and risks to a baby in pregnancy. Doses should be reduced gradually when pain goes into remission, because stopping too quickly can cause serious problems.

Other medicines, such as oxcarbazepine, lamotrigine, gabapentin, pregabalin and baclofen, may be used off-label, and a specialist should explain that they are unlicensed and discuss the benefits and risks. Because these medicines can cause drowsiness and unsteadiness, they should be considered in the person's falls and medicines reviews, as explained in our guide to polypharmacy and deprescribing.

Surgery and procedures

The NHS says surgery may be considered if medicine does not work or causes persistent, troublesome side effects. No option is guaranteed. Percutaneous procedures use a needle or tube through the cheek to treat the nerve, with relief often lasting a few years but sometimes only months, and facial numbness being the main side effect. Stereotactic radiosurgery uses a concentrated radiation beam, and effects can take weeks to months. Microvascular decompression is a neurosurgical operation under general anaesthetic that relieves pressure from blood vessels on the nerve. It gives the longest-lasting relief, although some studies suggest the pain returns in about 3 in 10 cases within 10 to 20 years, and it carries serious risks.

Supporting someone with trigeminal neuralgia

• Plan personal care. Ask the person which tasks trigger pain, and how they prefer to wash, shave or clean their teeth. Use gentle, predictable movements and avoid sudden touch or draughts on the face.
• Support eating and drinking. Offer foods and temperatures that the person finds tolerable, and watch for weight loss and dehydration.
• Take every report of pain seriously. Our guide to the Abbey Pain Scale helps staff assess pain in people who cannot describe it.
• Know when to escalate. The NHS advises contacting the GP or NHS 111 for persistent or troublesome medicine side effects, and 999 for a severe skin rash with blisters or ulcers or for thoughts of self-harm.
• Offer emotional support and signposting. The Trigeminal Neuralgia Association UK offers advice and peer contact.

Recording and review

Keep a simple diary of attacks, triggers, medicine doses, food and fluid intake and mood. It helps the GP or specialist adjust treatment and decide whether referral to a neurologist, neurosurgeon or pain specialist is needed. Share findings with night and agency staff so the person is cared for consistently.

Supporting staff learning

Learnsignal's CPD library offers learning options for care and healthcare teams who want to develop their skills in pain, mood and person-centred care.

Frequently asked questions

Is trigeminal neuralgia the same as toothache? No, although the pain is often felt in the teeth or jaw. The NHS advises seeing a GP for persistent facial pain, especially when a dentist has ruled out dental causes.

Do paracetamol or ibuprofen help? According to the NHS, paracetamol does not work for this pain, which is why anticonvulsant medicines are used.

Can the pain go away? Remission can last months or years, and surgery can give longer relief for some people, but there are no guarantees.