Private trigeminal neuralgia clinic in London, same-day specialist medicine.

What it feels like

• Sudden, severe, stabbing or electric-shock pain, usually on one side of the face
• attacks lasting seconds to about two minutes, often in bursts, with complete freedom in between
• most often in the cheek and jaw, sometimes around the eye
• triggered by light touch — chewing, brushing teeth, shaving, washing the face, wind, cold air, talking or smiling
• people often avoid eating, stop shaving on that side, or cover the face outdoors
• periods of remission for weeks or months are common, and attacks tend to become more frequent over years

What causes it

Most commonly a blood vessel pressing on the trigeminal nerve where it leaves the brainstem, wearing away its insulating sheath so signals misfire. Less commonly it results from multiple sclerosis, or from a benign growth pressing on the nerve — which is why MRI is recommended for most people at diagnosis, and particularly for anyone young or with atypical features.

Treatment

• Carbamazepine is first-line and works well for the majority. It is started at a low dose and increased gradually. Drowsiness, dizziness and unsteadiness are common early and often settle; blood tests are needed to monitor sodium, liver function and blood counts.
• It interacts with many medicines, including hormonal contraception, which it makes less effective. Tell any clinician prescribing for you.
• Oxcarbazepine, lamotrigine, gabapentin and others are alternatives where carbamazepine is not tolerated.
• Ordinary painkillers — paracetamol, ibuprofen, even opioids — do not work. This is nerve pain, and the medication has to act on nerve signalling.
• Doses often need adjusting over time, and treatment can sometimes be reduced during remissions.

If medication is not enough

• Microvascular decompression — neurosurgery to move the blood vessel off the nerve. The most effective option, with long-lasting relief in a high proportion, but it is major surgery.
• Stereotactic radiosurgery (Gamma Knife) — non-invasive, though relief takes weeks to months and may fade over years.
• Percutaneous procedures — balloon compression, glycerol injection or radiofrequency, which damage the nerve deliberately. Effective, with a risk of facial numbness.
• Referral to a specialist facial pain service is appropriate for anyone not controlled on medication.

Living with it

The unpredictability is as difficult as the pain — people avoid eating out, conversation and going outside in cold weather, and rates of depression are high. Soft or room-temperature food during attacks, a scarf over the face in wind, and using a straw all help practically. This is a recognised cause of severe distress, and support for that is part of proper treatment rather than an afterthought.