Glossopharyngeal neuralgia: symptoms, causes and treatment

TNA UK explains that the glossopharyngeal nerve carries sensation from parts of the throat, tongue and ear and contributes to swallowing. Neuralgia of this nerve causes sudden attacks that begin and end abruptly. It is rare and requires specialist assessment.

The Brain Charity describes it as a rare chronic pain disorder, characterised by brief episodes of intense pain, usually on one side, that most commonly affects the throat, ear, tongue and jaw.

TNA UK lists brief, severe, stabbing, shooting or electric-shock-like pain felt in the throat, tonsil area, base of the tongue, deep in the ear or beneath the angle of the jaw. Attacks last seconds to about two minutes and usually affect one side. The Brain Charity adds that some people describe a burning sensation, pain that moves to the neck, or a sensation of an object stuck in the throat.

TNA UK stresses not to dismiss deep ear or throat pain simply because the ear or throat looks normal.

• Brief, severe stabbing, shooting or electric-shock-like pain.

• Pain in the throat, tonsil area, base of the tongue, deep in the ear, or beneath the angle of the jaw.

• Attacks lasting seconds to about two minutes, usually on one side.

• Triggers such as swallowing (especially cold liquids), talking, coughing, sneezing or yawning.

• Rarely, fainting, a slow heart rate or other cardiac symptoms.

TNA UK says to tell the clinician immediately about fainting, palpitations, dizziness, chest symptoms or a slow pulse, because rarely attacks can be associated with changes in heart rate and blood pressure. For family members and carers, it advises calling 999 for collapse, loss of consciousness, chest symptoms or severe breathing or swallowing difficulty.

TNA UK also advises seeking urgent help if adequate food or fluids are not possible because of the fear of triggering pain. If you feel unable to keep yourself safe, call 999 or go to A&E; for urgent mental-health help that is not an immediate emergency, use 111 and select the mental health option where available.

The Brain Charity says glossopharyngeal neuralgia is caused by compression of the glossopharyngeal nerve, often due to a pulsating blood vessel nearby that irritates the nerve. It is usually triggered by swallowing, coughing or talking.

TNA UK adds that some cases are associated with vascular compression or another underlying cause, while others remain idiopathic, meaning no cause is found. This is similar to trigeminal neuralgia, which the NHS says is usually caused by compression of the trigeminal nerve by a blood vessel, and can also happen when the nerve is damaged by another condition such as multiple sclerosis or a tumour.

TNA UK says glossopharyngeal neuralgia is not the same as trigeminal neuralgia (TN). The pain distribution and swallowing-related triggers differ, although both cause brief neuralgic attacks.

TNA UK says assessment may involve a GP, ENT specialist, neurologist, neurosurgeon, oral medicine or facial pain service. The clinician asks about the exact location, the swallowing triggers and the length of attacks, and may arrange an MRI scan or other investigations. Dental, throat, ear and cardiac causes may need to be excluded.

It suggests keeping a record of whether pain is triggered by swallowing, cold drinks, talking, coughing or yawning, where it is felt, how long attacks last and any fainting or palpitations, and medicines and tests already tried. The NHS notes that diagnosing the related trigeminal neuralgia can be difficult and can take a few years, so recording details is helpful.

TNA UK says medicines used for neuralgic pain may be prescribed, often using principles similar to trigeminal neuralgia treatment. For trigeminal neuralgia the NHS says the first treatment usually recommended is the anticonvulsant carbamazepine, which relieves nerve pain by slowing electrical impulses in the nerves. If medicines fail or are poorly tolerated, TNA UK says a neurosurgeon may discuss procedures in carefully selected cases. The NHS describes surgery that moves a blood vessel away from the nerve as the best long-term relief for trigeminal neuralgia, but a major operation with risks. Whether the same applies to the glossopharyngeal nerve is a decision for your specialist.

Any fainting, heart rhythm symptoms or swallowing difficulty must be reported to the clinician.

TNA UK says fear of triggering pain can affect eating, drinking, speaking and social confidence, and nutrition and hydration need attention when swallowing becomes difficult. Support for sleep, anxiety, low mood and coping can sit alongside medical treatment and does not mean the pain is imagined. Allow the person to eat, drink and speak at a pace that reduces triggering, and support them in recording triggers.

TNA UK runs a helpline and support groups, and The Brain Charity offers practical help, counselling, group therapy and a physiotherapy service for people with neurological conditions.

On the NHS, the route usually starts with the GP and may involve ENT, neurology, oral medicine or a facial pain service, and neurosurgery for selected cases. Because the condition is rare, a referral to a service experienced in neuralgia is useful.

Private neurology or neurosurgery appointments can shorten waiting times for assessment and MRI. Ask for letters to be copied to your GP so that medicines are coordinated.