Treatment

Anumber of treatments can offer some relief from the pain caused by trigeminal neuralgia.

Identifying triggers and avoiding them can also help.

Most people with trigeminal neuralgia will be prescribed medication to help control their pain, although surgery may be considered for the longer term in cases where medication is ineffective or causes too many side effects.

Avoiding triggers

The painful attacks of trigeminal neuralgia can sometimes be initiated or made worse by certain triggers, so it may help to avoid these triggers if possible.

For example, if your pain is triggered by wind, it may help to wear a scarf wrapped around your face in windy weather. A transparent dome-shaped umbrella can also protect your face from the weather.

If your pain is triggered by a draught in a room, avoid sitting near open windows or the source of air conditioning.

Avoid hot, spicy or cold food or drink if these seem to trigger your pain. Using a straw to drink warm or cold drinks may also help prevent the liquid coming into contact with the painful areas of your mouth.

It's important to eat nourishing meals, so consider eating mushy foods or liquidising your meals ifyou're having difficulty chewing.

Certain foods seem to trigger attacks in some people, so you may want to consider avoiding things such as caffeine, citrus fruits and bananas.

Medication

As normal painkillers like paracetamol aren't effective in treating trigeminal neuralgia, you'll normally be prescribed an alternative medication, such as an anticonvulsant usually used to treat Epilepsy to help control your pain.

Anticonvulsants weren't originally designed to treat pain, but they can help relieve nerve pain by slowing down electrical impulses in the nerves and reducing their ability to transmit pain.

They need to be taken regularly, not just when the pain attacks occur, but can be stopped when the episodes of pain cease and you're in remission.

Unless otherwise instructed by your GP or specialist, it's important to build the dosage up slowly and reduce it again gradually over a few weeks. Taking too much too soon and stopping the medication too quickly can cause serious problems.

Initially, your GP will probably prescribe a type of anticonvulsant called carbamazepine, although a number of alternatives are available if this is ineffective or unsuitable.

Carbamazepine

The anticonvulsantcarbamazepine is currently the only medication licensed to treat trigeminal neuralgia inthe UK. It can be very effective initially, but may become less effective over time.

You'll usually need to takecarbamazepine at a low dose once or twice a day, with the dose being gradually increased and taken up to four times a day until it provides satisfactory pain relief.

Carbamazepine often causes side effects, which may make it difficult for some people to take. These include:

• tiredness and sleepiness
• dizziness (lightheadedness)
• difficulty concentrating and memory problems
• confusion
• feeling unsteady on your feet
• feeling sick and vomiting
• double vision
• a reduced number of infection-fighting white blood cells (leukopenia)
• allergic skin reactions, such as hives (urticaria)

You should speak to your GP if you experience any persistent or troublesome side effects while taking carbamazepine, particularly allergic skin reactions, as these could be dangerous.

Carbamazepine has also been linked to a number of less common but more serious side effects, including thoughts of self-harm or suicide .

Immediately report any suicidal feelings to your GP. If this isn't possible, call NHS 111 .

Other medications

Carbamazepine may stop working over time. In this case,or if you experience significant side effects while taking it, you should be referred to a specialist to consider alternative medications or procedures.

There are a number of specialists you may be referred to for further treatment, including neurologists specialising in headaches , neurosurgeons, and pain medicine specialists.

In addition to carbamazepine, a number of other medications have been used to treat trigeminal neuralgia, including:

• oxcarbazepine
• lamotrigine
• gabapentin
• pregabalin
• baclofen

None of these medications are specifically licensed for the treatment of trigeminal neuralgia, which means they haven't undergone rigorous clinical trials to determine whether they're effective and safe to treat the condition.

However, many specialists will prescribe an unlicensed medication if they think it's likely to be effective and the benefits of treatment outweigh any associated risks.

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

Not everyone experiences side effects, but if you do, try to persevere as they often diminish with time or at least until the next dosage increase.

Talk to your GP if you're finding the side effects unbearable.

Surgery and procedures

If medication doesn't adequately control your symptoms or is causing persistently troublesome side effects, you may be referred to a specialist to discuss the different surgical and non-surgical options available to relieve your pain.

A number of procedures have been used to treat trigeminal neuralgia, so you'll need to discuss the potential benefits and risks of each one with your specialist before making a decision.

It's a good idea to be as informed as possible and choose the treatment that's right for you.

There's no guarantee that one or any of these procedures will work for you, but once you've had a successful procedure you won't need to take your pain medications unless the pain returns.

If one procedure doesn't work, you can try another or remain on your medication temporarily or permanently.

Some of the procedures that can be used to treat trigeminal neuralgia are outlined below.

Percutaneous procedures

There are a number of procedures that can offer some relief from the pain oftrigeminal neuralgia, at least temporarily, by inserting a needle or thin tube through the cheek and into the trigeminal nerve inside the skull.

These are knownas percutaneous procedures. They're carried out using X-rays to guide the needle or tube into the correct place while you're heavily sedated with medication or under a general anaesthetic , where you're unconscious.

Percutaneous procedures that can be used to treat people with trigeminal neuralgia include:

• glycerol injections where a medication called glycerol is injected around the Gasserian ganglion, where the three main branches of the trigeminal nerve join together
• radiofrequency lesioning where a needle is used to apply heat directly to the Gasserian ganglion
• balloon compression where a tiny balloon is passed along a thin tube inserted through the cheek and is inflated around the Gasserian ganglion to squeeze it; the balloon is then removed

These procedures work by deliberately injuring or damaging the trigeminal nerve, which is thought to disrupt the pain signals travelling along it. You're usually able to go home the same day.

Overall, all of these procedures are similarly effective in relieving trigeminal neuralgia pain, although there can be complications with each. These vary with the procedure and the individual.

The pain relief will usually only last a few years or, in some cases, a few months. Sometimes these procedures don't work at all.

The major side effect of these procedures is numbness of part or all the side of the face, which can vary in severity from being very numb or just pins and needles .

The sensation, which can be permanent, is often similar to that following an injection at the dentist. Very rarely, you can get a combination of numbness and continuous pain called anaesthesia dolorosa, which is virtually untreatable.

The procedures also carry a risk of other short- and long-term side effects and complications, including bleeding, facial bruising, eye problems and impaired hearing on the affected side. Very rarely, it can cause stroke .

Stereotactic radiosurgery

Stereotactic radiosurgery isa fairly new treatment that uses a concentrated beam of radiation to deliberately damage the trigeminal nerve where it enters the brainstem.

Stereotactic radiosurgery doesn't require ageneral anaesthetic and no cuts (incisions) are made in your cheek.

A metal frame is attached to your head with four pins inserted around your scalp a local anaesthetic is used to numb the areas where these are inserted.

Your head, including the frame, is held in a large machine for an hour or two while the radiation is given. The frame and pins are then removed, and you're able to go home after a short rest.

It can take a few weeksor sometimes many monthsfor stereotactic radiosurgery to take effect, but it can offer pain relief for some people for several months or years.

Studies looking at this treatment have shown similar results to the other procedures mentioned above.

Facial numbness andpins and needles in the face are the most common complications associated with stereotactic radiosurgery. These side effects can be permanent and, in some cases, very troublesome.

Microvascular decompression

Microvascular decompression (MVD) is an operation that can help relieve trigeminal neuralgia pain without intentionally damaging the trigeminal nerve.

Instead, the procedure involves relieving the pressure placed on the nerve by blood vessels that are touching the nerve or wrapped around it.

MVD is a major procedure that involves opening up the skull, and is carried out under general anaesthetic by a neurosurgeon.

During the procedure the surgeon will make an incision in your scalp behind your ear and remove a small circular piece of skull bone.

They'll then either remove or relocate the blood vessel(s), separating them from the trigeminal nerve using an artificial pad or a sling constructed from adjoining tissue.

For many people this type of surgery is effectiveat easing or completely stopping the pain of trigeminal neuralgia.

It provides the longest lasting relief, with some studies suggesting pain only recurs in about 30% of cases within 10 to 20 years of surgery.

Currently, MVD is the closest possible cure for trigeminal neuralgia. However, it's an invasive procedure and carries a risk of potentially serious complications, such as facial numbness, hearing loss , stroke and even death in around 1 in every 200 cases.

Furtherinformation and support

Living with a long-term and painful condition, such as trigeminal neuralgia, can be very difficult.

You may find it useful to contact local or national support groups, such as the Trigeminal Neuralgia Association UK , for more information and advice about living with the condition, and to get in touch with other people who have the condition to talk to them about their experiences.

A number of research projects are running both in the UK and abroad to determine the cause oftrigeminal neuralgia and find new treatments, including new medications, so there's always hope on the horizon.