Neuralgia, trigeminal

Trigeminal neuralgia is sudden, severe facial nerve pain. The pain in the face can be:

  • stabbing
  • piercing
  • like an electric shock
  • aching
  • throbbing
  • burning

The pain can occur for just a few seconds or it can last for up to two minutes.

In 80-90% of cases of tigeminal neuralgia, the pain is caused by pressure on the trigeminal nerve which is the largest nerve inside the skull.

See Trigeminal neuralgia - causes for more information about the trigeminal nerve and other causes of this condition. 

In most cases, trigeminal neuralgia only affects one side of the face (unilateral). The right side of the face is more commonly affected than the left side. Only 3-5% of people with trigeminal neuralgia have pain on both sides of their face (bilateral).

Types of trigeminal neuralgia

Trigeminal neuralgia can be split into different categories depending on the type of pain. These are described below.

  • Trigeminal neuralgia type 1 (TN1) is the classic form of trigeminal neuralgia. The piercing and stabbing pain only happens at certain times and is not constant. This type of neuralgia is known as idiopathic (when no cause can be identified).
  • Trigeminal neuralgia type 2 (TN2) can be referred to as atypical (not typical) trigeminal neuralgia. The pain is much more constant and involves more aching, throbbing and burning sensations.
  • Symptomatic trigeminal neuralgia (STN) is when the pain results from an underlying cause, such as the condition multiple sclerosis

How common is trigeminal neuralgia?

Trigeminal neuralgia is rare. It affects four or five people out of every 100,000 each year.

Almost twice as many women are affected by trigeminal neuralgia as men. The condition becomes more common with age and it is rare in people who are under 40 years of age. Trigeminal neuralgia is most commonly seen in people who are 60 to 70 years of age.

Outlook

Trigeminal neuralgia is a chronic (long-term) condition that often gets worse over time. There is currently no cure.

Living with trigeminal neuralgia can be very difficult and it can interfere with a person's quality of life. However, medicines can usually provide temporary relief.

If medication is not effective or causes unpleasant side effects, surgery is usually needed. However, surgery may also have side effects.

Research has suggested that surgery provides effective short-term pain relief but, for most people, the pain is likely to return after a few years .

See Trigeminal neuralgia - treatment for more information about the different types of surgical treatment, the potential risks and the medicines that are available to treat the pain.

Trigeminal neuralgia is sudden, severe facial nerve pain 

Postherpetic neuralgia

This article focuses on trigeminal neuralgia which is a rare type of neuralgia thatis most commonly seen in people who are 60 to 70 years of age.

Postherpetic neuralgia is a more common type of neuralgia that usually develops after a previous shingles infection.

See the Health A-Z topic about Postherpectic neuralgia for more information.

The symptoms of trigeminal neuralgia include:

  • a severe stabbing or piercing pain in your face that comes on suddenly
  • the pain may last from a few seconds to two minutes each time
  • the pain can be in the lower jaw, upper jaw, cheek, eye and (in rare cases) forehead
  • the pain is almost always on one side of your face, although in rare cases it is on both sides
  • episodes are triggered by certain actions (see below)
  • you may feel some tingling or numbness in your face before the pain develops
  • you may feel a slight ache or burning feeling during the attack

You may have spasms of pain regularly for days, weeks or months at a time. In severe cases, you may feel pain hundreds of times a day. Some people experience a constant dull ache in certain areas between episodes of pain. However, it is possible for the pain to disappear completely and not reoccur for months or years.

Triggers of trigeminal neuralgia

Episodes of trigeminal neuralgia can be triggered by certain actions or movements, such as:

  • talking
  • smiling
  • chewing
  • brushing your teeth
  • a light touch
  • shaving
  • swallowing
  • a cool breeze
  • head movements

Living with trigeminal neuralgia can be very difficult, and it can interfere with your quality of life. You may feel like avoiding activities such as washing, shaving or eating in order to avoid triggering the pain.

Living with pain, especially if it affects your quality of life, can also lead to depression (feelings of extreme sadness or despair that last for a long time). See the Health A-Z topic on Depression for more information.

Atypical trigeminal neuralgia

Atypical means irregular or not typical. If you have this type of trigeminal neuralgia, you will feel prolonged pain between attacks. It may be a constant throbbing, aching or burning sensation. This form of trigeminal neuralgia responds less well to treatment than classic trigeminal neuralgia.

Trigeminal neuralgia may be caused by compression of the trigeminal nerve or an underlying disease.

The trigeminal nerve

The trigeminal nerve (also called the fifth cranial nerve) is the largest nerve found inside the skull. You have two trigeminal nerves, one in each side of your face. Each nerve splits into three branches:

  • The upper branch (ophthalmic) runs above the eye, forehead and front of the head.
  • The middle branch (maxillary) runs through the cheek, side of the nose, upper jaw, teeth and gums.
  • The lower branch (mandibular) runs through the lower jaw, teeth and gums.

Between them, these three branches transmit sensations of pain and touch from your face, teeth and mouth to your brain. Trigeminal neuralgia can involve one or more branches of the trigeminal nerve. The maxillary branch is affected most often and the ophthalmic branch is affected the least often.

Pressure on the trigeminal nerve

It is thought that in 80-90% of cases, the cause of trigeminal neuralgia is pressure on the trigeminal nerve by an artery or a vein. However, in most cases it has not been possible to confirm this using the routine MRI scan.

One study found that in 64% of cases, the cause of the pressure on the trigeminal nerve was an artery, and in 36% of cases it was caused by a vein.

It is thought that the pressure on the trigeminal nerve causes uncontrollable pain signals to travel along the nerve to your face, resulting in the sudden stabbing pains.

Other underlying causes

Other underlying causes that can affect the trigeminal nerve include:

  • a tumour (a growth or lump)
  • a cyst multiple sclerosis
  • , a long-term condition that affects the central nervous system (the brain and spinal cord)

In multiple sclerosis, the nerve fibres of your central nervous system become damaged by the immune system (the body's defence system). This damage can affect the trigeminal nerve.

See your GP if you think you may have trigeminal neuralgia. Your GP will ask you about your symptoms, and they may carry out some tests (see below).

As the pain caused by trigeminal neuralgia is often felt in the jaw, teeth or gums, it is common for people to visit their dentist rather than their GP. If you visit your dentist, they will investigate your facial pain using a dental X-ray.

This can sometimes delay a diagnosis of trigeminal neuralgia because other more common causes are normally considered first.

If you have already seen your dentist and they have not been able to diagnose trigeminal neuralgia or another cause of your pain, visit your GP.

If your symptoms suggest that you have trigeminal neuralgia, your GP will need to examine your face to find out exactly which parts are painful. They will perform a careful examination on the following areas:

  • head and neck
  • ears
  • mouth
  • teeth
  • joint of the lower jaw (temporomandibular joint)

Ruling out other conditions

Other conditions that can cause facial pain will need to be ruled out before a diagnosis of trigeminal neuralgia can be made. It is important to determine whether or not you have the classic form of trigeminal neuralgia or neuralgia caused by another condition (symptomatic trigeminal neuralgia), in which case treatment should focus on the underlying condition. Other conditions that should be ruled out are:

  • dental infection or cracked tooth
  • migraine
  • joint pain in the lower jaw
  • temporal arteritis, a serious condition that causes the blood vessels in the temple to become inflamed, which can lead to blindness or stroke
  • ongoing facial pain with no known cause (idiopathic)

If you are under 40 years old, a different diagnosis will be investigated by your GP. This is because trigeminal neuralgia is uncommon in people under 40.

Multiple sclerosis

If your GP needs to rule out other conditions to confirm a diagnosis of neuralgia, you may need to have a magnetic resonance imaging (MRI) scan. An MRI scan uses a strong magnetic field and radio waves to create detailed images of the inside of your brain and the trigeminal nerve.

As well as being able to confirm a diagnosis of trigeminal neuralgia, an MRI scan can show whether trigeminal neuralgia is caused by another condition, such as multiple sclerosis (a long-term condition that affects the brain and spinal cord). Around 1-5% of people with multiple sclerosis develop trigeminal neuralgia, so this condition will need to be investigated.
 
An MRI scan can also rule out other causes of the facial pain, such as a tumour found in the base of the skull. These other causes account for 5-10% of trigeminal neuralgia cases.
 
You will be asked a number of questions relating to the symptoms of multiple sclerosis to rule out this condition. Symptoms relating to multiple sclerosis include:

  • dizziness
  • unsteady, shaky limb movements and muscle co-ordination
  • weakness in the eye
  • changes in vision affecting just one side

An MRI scan can also reliably show whether the trigeminal nerve is being compressed.

Medication can provide temporary relief from the pain of trigeminal neuralgia. Surgery may be considered for people who experience severe pain despite medication, worsening pain or adverse effects from the medication.

Your GP will first prescribe a type of medicine called an anticonvulsant (usually used to treat seizures in epilepsy), which can help relieve or numb the pain in your face. Normal painkillers such as paracetamol are not effective in treating trigeminal neuralgia.

The anticonvulsant medicine called carbamazepine (see below) is usually the first medication to be recommended. However, if carbamazepine is not effective, a different anticonvulsant called gabapentin may be used.

Carbamazepine

Although carbamazepine is usually used to treat epilepsy, it can sometimes be effective in treating trigeminal neuralgia because it lessens the uncontrollable pain signals.

You will usually need to take this medicine one to two times a day to begin with, although some people may need a higher dose. The dose may be gradually increased three to four times daily depending on how well you respond to the treatment.

Although carbamazepine can be effective in helping to treat trigeminal neuralgia, it can cause side effects which may make it difficult for some people, such as the elderly, to use. The possible side effects are outlined below.

Very common side effects

These side effects have affected more than 1 in 10 people and include:

  • nausea (feeling sick) and vomiting
  • dizziness
  • tiredness
  • finding it difficult to control movements
  • a reduced number of infection-fighting white blood cells (leukopenia)
  • changes in liver enzyme levels (enzymes are proteins that speed up any reaction happening in the body)

Common side effects

These side effects have affected up to 1 in 10 people and include:

  • increased risk of bruising or bleeding
  • fluid retention (being unable to pass urine)
  • weight gain
  • confusion
  • headache
  • blurred or double vision
  • dry mouth

Uncommon side effects

Uncommon side effects of carbamazepine can include:

If you are of Chinese or Thai ethnicity, you may need to have a blood test before you can take carbamazepine. This is because people of these ethnicities are more vulnerable to developing a severe rash from the medication.

Anticonvulsants have been linked to thoughts of self-harm or suicide. Therefore, if you are prescribed them, you should immediately report any suicidal feelings to your GP.

For more information about the potential side effects of carbamazepine, ask your GP or read the information leaflet found inside your medicine. 

Interactions

You should speak to your GP if you are taking any hormonal methods of contraception such as the Pill. This is because carbamazepine can affect the way your contraceptive works and may make it less effective.

Referral to a specialist

Anticonvulsants for trigeminal neuralgia may stop working over time. This is because they are only effective in numbing the pain and not at stopping the cause of it. If this occurs, you may be referred for specialist treatment.

You may also be referred for specialist treatment for trigeminal neuralgia if:

  • you have pain in your face between spasms of trigeminal neuralgia
  • any of your senses are affected
  • anticonvulsants are not effective in controlling your pain
  • anticonvulsants cause you to experience severe side effects
  • you are under 40 years old

Specialist treatment for trigeminal neuralgia may be provided by a number of different healthcare specialists including:

  • a neurologist - a specialist in conditions of the central nervous system
  • a pain specialist in treating trigeminal neuralgia
  • a neurosurgeon - an expert in surgery of the brain and nervous system

If carbamazepine or gabapentin have not been effective in controlling your pain, your specialist may recommend other medications. For example, oxcarbazepine and phenytoin may be recommended for treating trigeminal neuralgia, although they may currently be unlicensed for treating of this condition in the UK. 

Unlicensed medications

Unlicensed medications are medications that do not have a license to be used to treat certain conditions. In other words, the medication has not undergone clinical trials (a type of research that tests one treatment against another) to determine whether it is effective and safe to treat the condition.

However, some experts will use an unlicensed medication if they think it is likely to be effective and the benefits of treatment outweigh any associated risk.

If your specialist is considering prescribing an unlicensed medication to treat trigeminal neuralgia, they should inform you that it is unlicensed and discuss the possible risks and benefits with you.

Possible procedures

Some of the procedures that you may wish to consider are outlined briefly below, although they each carry risks.

  • nerve block: an anaesthetic (which numbs sensation) is injected into your face over several weeks or months
  • cryotherapy: the trigeminal nerve is frozen using chemicals
  • alcohol injections: these are given into the ends of your nerves to numb your pain
  • glycerol injection: this is injected into the central part of the trigeminal nerve to numb pain 
  • neurectomy: the ends of your nerves are cut
  • peripheral radiofrequency thermocoagulation: radiation is used to damage the nerve endings
  • balloon compression: a tiny balloon is inflated over the trigeminal nerve to relieve pressure
  • electric current: this is used to numb the trigeminal nerve

Research has shown that 90% of people will gain immediate pain relief from radiofrequency thermocoagulation, glycerol injection or balloon compression. However, 50% of patients will lose sensation in their face after the procedure.

Patients having cryotherapy, neurectomy, alcohol injections or peripheral radiofrequency thermocoagulation may find that their pain returns after one year.

Surgery

In rare drug resistant cases, surgery may be recommended. In these cases special MRI sequences of images are taken. The aim of surgery is to either stop your blood vessels from putting pressure on the trigeminal nerve, or to damage the nerve just enough to stop the uncontrollable pain signals.

The two surgical procedures that are available are:

  • microvascular decompression
  • ablative treatments

These are described below.

Microvascular decompression

Microvascular decompression is an operation to release the pressure of blood vessels that are pressing on the trigeminal nerve.

During microvascular decompression surgery, the surgeon will either remove or relocate the blood vessels, separating them from the trigeminal nerve.

For most people, microvascular decompression surgery is very effective in easing the pain of trigeminal neuralgia. This type of surgery appears to provide the longest lasting relief. In over 70% of people receiving this type of surgery, pain relief was still felt 10 years after surgery.

However, the operation can sometimes cause hearing loss (this can occur in as many as 1 in 10 people). Also, it is possible for pain to return after surgery and for surgery to cause a loss of sensation in the face, but this is unusual. Very rarely, this type of surgery can result in stroke, meningitis or even death.

Stereotactic radiosurgery

Stereotactic radiosurgery uses a concentrated beam of radiation to try and reduce the uncontrollable pain signals travelling along the trigeminal nerve. Stereotactic radiosurgery does not require any anaesthetic (painkilling medication) and no incisions (cuts) are made in your skin.

As stereotactic radiosurgery is still a fairly new treatment, your surgeon will discuss exactly what is involved with you before your operation. So far, this treatment has been found to be quite effective for trigeminal neuralgia: 33-90% of patients experience an immediate end to facial pain, although 14% of patients can expect to have pain returning after 18 months. The treatment can take up to two months to achieve its maximum effect.

Stereotactic radiosurgery can cause facial numbness in 8% of cases. Uncommon complications include:

  • loss of taste
  • numbness in the eyes
  • deafness

Neuralgia can sometimes be triggered or made worse by a number of different things. You may be able to ease the pain of neuralgia by avoiding these triggers as much as possible.

For example, your pain may be triggered by wind or even by a draught in a room. If this is the case, avoid sitting near open windows or the source of air conditioning, and wear a scarf wrapped around your face in windy weather.

Hot or cold food or drink may trigger your pain, so try to avoid anything that is very hot or icy cold. Using a straw to drink warm or cold drinks may help to prevent the liquid coming into contact with the painful areas of your mouth.

Content provided by NHS Choices www.nhs.uk and adapted for Ireland by the Health A-Z.

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