Trigeminal neuralgia

What trigeminal neuralgia is

The trigeminal nerve carries feeling from your face to your brain. There is one on each side. In TN, this nerve sends sudden bursts of severe pain, often into the jaw, teeth, gums, cheek, lips, eye or forehead.

The most common cause is a blood vessel pressing on the nerve where it leaves the brain. This can wear away the nerve's protective coating. Less often, TN is caused by multiple sclerosis or, rarely, a growth pressing on the nerve. Sometimes no cause is found.

TN is rare. It is more common in women than men, and it usually starts between the ages of 50 and 60. It is uncommon in adults under 40. The pain is often described as one of the worst known, and fear of the next attack can deeply affect daily life, eating, sleep and mood.

Types of TN

Specialists describe TN by its cause and by the kind of pain you have.

Classical TN

Caused by a blood vessel pressing on the nerve, seen on an MRI scan. This is the type most likely to be helped by microvascular decompression surgery.

Secondary TN

Caused by another condition, such as multiple sclerosis or a growth near the nerve. It is more likely in younger people and can affect both sides.

Idiopathic TN

No cause can be found, even on an MRI scan.

Purely paroxysmal TN

Sometimes called TN1. Only sudden, short attacks, with no pain in between.

TN with continuous pain

Sometimes called TN2 or atypical TN. Attacks plus a constant aching or burning between them. Studies suggest between 14 and 50 in 100 people with TN have this. It can be harder to treat.

Attacks, triggers and remission

TN usually affects one side of the face. Pain comes in sudden attacks, like an electric shock or a sharp stab. In severe cases there can be hundreds of attacks a day.

Instant

Trigger

A light touch, talking, chewing, brushing teeth, washing or shaving, or a cold breeze. Sometimes there is no trigger at all.
Seconds to 2 minutes

Attack

Sudden, severe shooting pain. Attacks can come one after another, very close together.
Days, weeks or months

Bout of attacks

Attacks happen regularly over a period. Some people also have an ache or burning between attacks.
Months or years

Remission

The pain can stop completely for a time. For many people, pain-free spells get shorter over the years.

Timings are typical ranges, not exact rules. Everyone's TN is different.

Common triggers

Many people start avoiding eating, drinking or talking to prevent attacks. But not eating or drinking enough can make the pain worse. Ask your GP or dentist for help if this is happening.

When to get urgent help

Call 999 if you have

your face drooping on one side
weakness in one or both arms
slurred speech or trouble understanding
a sudden, extremely bad headache
a serious rash, fever or feeling very unwell after starting carbamazepine

These are not typical of TN and may be a stroke or a serious reaction.

Same day: dentist, GP or NHS 111 if

pain is so bad you can't eat, drink or take your medicines
you are becoming dehydrated
your usual treatment has stopped working

TNA UK suggests your own dentist first, or NHS 111 out of hours. Say you have TN. A dentist or maxillofacial doctor may be able to numb the nerve for a few hours.

See your GP if

you have frequent face pain that ordinary painkillers don't help, and a dentist has found no cause
you have new numbness in your face, or hearing changes
pain is on both sides of your face
your medicine is causing side effects
you feel low or are struggling to cope

If you do go to A&E

Ordinary painkillers and opioids usually don't work for TN. Take a list of your medicines and any TN alert card. If speaking is hard, take someone with you or write things down. Ask whether the on-call maxillofacial team can see you. Any emergency visit should be followed by a review of your treatment with your GP or specialist.

Diagnosis and referral

Because the pain is often in the teeth or jaw, many people see a dentist first. The dentist will look for problems such as infection or a cracked tooth, often with X-rays. If they find no cause, see your GP. Ask before agreeing to treatment such as extractions if the cause isn't clear.

There is no single test for TN. Your GP diagnoses it from your description of the pain: what it feels like, where it is, how long attacks last and what sets them off. They will also examine your head and face.

Your GP can start treatment straight away
An MRI scan can show a blood vessel pressing on the nerve, or rule out other causes
Other causes of face pain, such as dental problems and cluster headache, are ruled out
Referral to a neurologist, a facial pain clinic or a neurosurgeon

UK guidelines say referral should be urgent if there are unusual signs. These include numbness or weakness in the face, hearing problems, pain on both sides, a history of cancer, fever or weight loss, or symptoms starting before the age of 30. You should also be referred to a specialist if medicines stop working, cause side effects you can't manage, or the pain badly affects your life.

Medicines

Ordinary painkillers like paracetamol, ibuprofen and codeine don't usually help TN. Instead, medicines that calm the nerve are used. They are taken every day, not just during an attack, and are started low and increased slowly until the pain is controlled.

Carbamazepine

Prescription, usually from your GP first

The first treatment for TN, and the only medicine licensed for it in the UK. It often works quickly once the right dose is reached. Side effects can include tiredness, dizziness, unsteadiness, sickness and poor concentration. You will need blood tests. It affects some other medicines, including some contraception.

Oxcarbazepine

Usually recommended by a specialist

Similar to carbamazepine but may have fewer side effects for some people. It is not licensed for TN, but is widely used.

Other medicines

Usually recommended by a specialist

Lamotrigine, gabapentin, pregabalin and baclofen may be tried alone or alongside other medicines. They are not licensed for TN, so your doctor will explain the pros and cons.

Short-term relief

From a dentist or hospital team

A local anaesthetic injection (nerve block) can give a few hours of relief during a severe flare. It is a bridge, not a long-term treatment.

Important safety points

Carbamazepine and some other TN medicines can harm an unborn baby. If you could become pregnant, talk to your doctor about contraception and plans for pregnancy. Rarely, carbamazepine causes a severe skin reaction. Get urgent help for a rash with fever or blistering. Don't stop TN medicines suddenly, even in remission, without advice.

If you go into remission, your doctor may help you slowly reduce your medicine. Keep a plan for restarting it quickly if the pain returns.

Surgery and procedures

If medicines stop working or the side effects are too much, a neurosurgeon may offer a procedure. There are two main kinds: procedures that damage the nerve on purpose to stop pain signals, and an operation to move a blood vessel off the nerve.

Microvascular decompression (MVD)

Hospital stay usually 2 to 5 days, back to work in 4 to 8 weeks

An operation under general anaesthetic. The surgeon makes a small opening in the skull behind the ear and places a tiny pad between the nerve and the blood vessel. It doesn't damage the nerve, so facial numbness is less likely.

It gives the longest-lasting relief. TNA UK says about 7 in 10 people have long-term relief without needing TN medicines. The NHS says pain returns in about 3 in 10 people within 10 to 20 years.

Risks: as major brain surgery, it carries risks including hearing loss, facial numbness, a leak of spinal fluid, stroke and, in about 1 in 1,000 cases, death. Talk these through carefully with your surgeon.
Stereotactic radiosurgery (such as Gamma Knife)

Usually a day case, relief takes weeks to months

A carefully focused beam of radiation is aimed at the nerve. There are no cuts. It doesn't work straight away, so you keep taking your medicines while you wait. Relief can last months to years. Side effects can include numbness or pins and needles in the face, which may be permanent.
Percutaneous procedures

Usually an overnight stay or day case

A needle is passed through the cheek to the nerve under anaesthetic or sedation. The nerve is then damaged on purpose by heat (radiofrequency lesioning), by a small balloon (balloon compression) or by an injection of glycerol. Relief is often immediate and can last months to years, and they can be repeated. Facial numbness is common and can be permanent. Rarely, numbness with ongoing pain develops (anaesthesia dolorosa).

Which option suits you depends on your type of TN, what your MRI shows, your age and health, and your own preferences. Results tend to be best for classical TN, where a blood vessel is clearly pressing on the nerve.

Self-help

Avoiding triggers

Wear a scarf or hat in wind and cold
Sit away from fans, draughts and air vents
Use lukewarm water and a soft toothbrush
Try a straw for drinks
Eat soft or blended food during a bad spell

Looking after yourself

Keep eating and drinking. Hunger and thirst can make pain worse
Take medicines at regular times, as prescribed
Visit your dentist regularly. Tell them you have TN
Carry an alert card and a list of your medicines
Talk to someone if you feel low. Support groups can help

Getting the best care

Tips for appointments

Keep a pain diary: how many attacks, how long they last, triggers, medicines and side effects. It helps with diagnosis and treatment decisions.
Describe the pain clearly, for example "electric shock" or "stabbing", and say whether there is pain between attacks.
Ask for an MRI scan, and what it shows about the nerve.
Ask to be referred to a specialist facial pain clinic or neurosurgeon if medicines aren't working or side effects are hard to manage.
Before surgery, ask how many of these operations the surgeon does, their results, and the risks for you.
Ask for an emergency plan, so you know what to do in a severe flare.
If you aren't happy with your care, you can ask for a second opinion.

TN and work

TN can count as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). This applies if it has more than a minor effect on your daily life and has lasted, or is likely to last, at least 12 months. Conditions that come and go, with spells of remission, can count. The law looks at how you would be without treatment.

If it counts, your employer must make reasonable adjustments. These might include:

Moving your desk away from air conditioning, fans and draughts
Less time on the phone or speaking in meetings
Using email or chat instead of calls
Flexible hours and working from home
Time off for appointments and surgery
A phased return after surgery
Adjusting targets during a bad spell
Flexibility on TN-related absence

Equipment that can help

Access to Work is a government grant that can pay for equipment and support at work. For advice on your rights, contact Acas or Citizens Advice.

Benefits

Depending on how TN affects you, you may be able to get Statutory Sick Pay, Personal Independence Payment (PIP) or Adult Disability Payment in Scotland, new-style Employment and Support Allowance or Universal Credit. A prescription prepayment certificate can cut the cost of regular medicines in England. Gather your medical records and pain diary before applying. Turn2us and Citizens Advice can help you check.

How The Beyond Pain Foundation can help

If NHS waits are too long, or the help you need isn't available to you on the NHS, we may be able to fund:

A private consultation with a facial pain specialist, neurologist or neurosurgeon
An MRI scan recommended by your doctor
Travel to a specialist centre for treatment
Support during recovery from surgery, such as a phased return plan or occupational therapy
Workplace or home equipment, such as voice recognition software, a headset or an ergonomic setup

We fund treatment, equipment and support, not general living costs. Surgery is a big decision with serious risks, so we will only consider funding treatment recommended by your specialist. Prices vary, so always get a written quote to include with your application.

Apply for funding Check the requirements

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