Trigeminal neuralgia is a kind of nerve pain which can give stabbing or burning sensations down the side of the face, usually on one side only. The pain may only last a few seconds or minutes but may repeat many times during an attack. For some people the face pain is present all the time. Trigeminal neuralgia can be excruciatingly painful.
Trigeminal neuralgia is more common in multiple sclerosis than in the general population and can be confused with dental pain. If you are experiencing these symptoms, you should be assessed to see if it is a symptom of your MS especially before you consider any major dental work.
The pain can be triggered by every day activities such as eating, shaving, talking or by being out in even a light breeze. Noticing any triggers can help you manage the pain by avoiding them where possible. Treatment is usually with a drug called carbamazepine to begin with. If drug treatments are not working, surgery may be an option.
What is trigeminal neuralgia?
Trigeminal neuralgia, sometimes called tic douloureux, is a type of nerve (neuropathic) pain in the side of the face and can be a symptom of multiple sclerosis. Different people experience trigeminal neuralgia in different ways. It is most commonly felt in the cheek or in the upper or lower jaw but some people experience pain up towards the eye, ear and forehead or inside the mouth. It can feel like it is coming from one or more teeth so many people visit their dentist to begin with. It is usually on one side of the face only (unilateral) although in rare cases it occurs on both sides of the face (bilateral) although not at the same time.
For some people it is a sudden severe sharp pain like an electric shock but for others it may be a more long lasting aching or burning sensation. It typically occurs as sudden short attacks lasting from a few seconds to a couple of minutes. For some people, these attacks occur many times a day; this is an example of paroxysmal symptoms. Some people are aware that an attack is coming but, for most people, it arrives without warning.
Attacks may continue for days or months but there can also be pain free times, known as periods of remission, which last for months or even years. For some people, the pain becomes continuous.
What causes trigeminal neuralgia?
This symptom is called trigeminal neuralgia because it is the trigeminal nerve which is affected. Neuralgia means pain that follows the path of a nerve. The trigeminal nerve controls the muscles needed for chewing, and is responsible for the feelings of touch and pain in the face. There are two trigeminal nerves, one on each side of the face, and each nerve has three main branches so giving the name trigeminal (with "tri" meaning three). Trigeminal neuralgia can affect one or more of these branches and the location of your pain depends on which one(s) are affected.
In MS, trigeminal neuralgia is most often caused by damage to the myelin sheath around the trigeminal nerve. In people who do not have MS, it is most often caused by a blood vessel pressing on the nerve inside the skull which is known as compression. This can occasionally happen in people with MS so it can be important to determine which is the cause of your pain before considering treatment options, especially surgery.
The bouts of pain felt in trigeminal neuralgia are often triggered by daily activities, some of them very brief or seemingly trivial. These can include:
- Loud sound
- Putting on makeup
- Head movements
- Brushing your teeth
- A breeze or air conditioning
- Hot, cold or spicy food
- Vibration from walking
- Vibration on a car journey
However, the pain may occur spontaneously with no obvious trigger.
Research has suggested that fampridine may make trigeminal neuralgia worse and possibly precipitate this type of pain in someone who is already experiencing altered sensations in the face.
How many people get trigeminal neuralgia?
Recent research suggests that between four and six in every 100 people with MS experience trigeminal neuralgia which is about 400 times more often than the general population. Trigeminal neuralgia is sometimes an early symptom in MS, but it also becomes more likely the longer you have had MS.
It is rare for people under 40 who do not have MS to experience trigeminal neuralgia so, for those in this age range, it is particularly important to consider if the symptom is part of their MS.
What can I do if I have trigeminal neuralgia?
If your pain feels like it might be associated with one or more of your teeth, then it is worth visiting the dentist first. It would be worth mentioning that you have MS and that trigeminal neuralgia may be a possibility. If the dentist can find nothing wrong with your teeth or suggests major dental work, such as an extraction or root canal, it may be worth exploring the possibility of trigeminal neuralgia before proceeding further.
Sometimes trigeminal neuralgia can give pain around the ear which feels similar to an ear infection. Your GP or practice nurse should be able to check this for you.
If you are concerned about your pain, contact your MS nurse or neurologist directly or ask your GP to refer you for assessment. It will be important to describe your pain as clearly as possible and to say if it is excruciating so that you are referred as soon as possible.
How is trigeminal neuralgia treated?
There is no specific test for trigeminal neuralgia so diagnosis and treatment depends on your description of your pain. You may have an MRI scan to rule out other conditions or to see if your MS is more active at the moment. An MRI scan can sometimes show if trigeminal neuralgia is due to a blood vessel pressing on the nerve inside the skull. This is known as compression and is the main cause of trigeminal neuralgia in the general population although not in people with MS.
Trigeminal neuralgia is a long term condition. Although there is no cure, it can usually be managed to some degree with treatment.
Like other forms of nerve pain, trigeminal neuralgia is not eased by common painkillers like paracetamol, aspirin or ibuprofen. The National Institute for Health and Care Excellence (NICE) has issued guidelines for the treatment of nerve (neuropathic) pain. They recommend that trigeminal neuralgia is treated with carbamazepine (Tegretol) initially. The treatment is usually taken several times a day and the dose is increased slowly over a few days or weeks until an effective dose is reached. If you need to stop carbamazepine for any reason, the dose will usually be reduced gradually.
Baclofen may be prescribed to relax the muscles and this may ease your pain. Baclofen may be prescribed in combination with carbamazepine or other drugs, such as oxcarbazepine (Trileptal), lamotrigine (Lamictal), gabapentin (Neurontin) or pregabalin (Lyrica).
If medication doesn’t work well or causes too many side effects, you may be referred to a pain specialist or neurosurgeon to discuss other options that may help.
There are a number of different surgical procedures to treat trigeminal neuralgia. The exact type of procedure suitable for you (if any), and the possible complications and benefits of any surgical procedure will vary from person to person, and should be discussed directly with your neurosurgical team. The following is intended as a brief guide, and might help you to think about what a neurosurgeon may mention, or what questions you could ask them.
There are several percutaneous (through the skin) surgical options so you will need to weigh up the potential benefits and risks of each treatment in consultation with your health professionals. They are carried out while you are heavily sedated with medication or under a general anaesthetic. You can usually go home the same day.
The treatments work by deliberately injuring the trigeminal nerve to disrupt the pain signals travelling along it.
- glycerol injections where a medication called glycerol is injected around the Gasserian ganglion, where the three main branches of the trigeminal nerve join together
- gamma knife or radiofrequency lesioning where a needle is used to apply heat directly onto the Gasserian ganglion
- balloon compression where a tiny balloon is passed along a thin tube inserted through the cheek and then inflated around the Gasserian ganglion to squeeze it. The balloon is then removed.
- Botulinum toxin (Botox) injections around the Gasserian ganglion are currently being studied as treatment for trigeminal neuralgia in MS.
The most common side effect is numbness of all or part of the face which can feel similar to when you’ve had an injection at the dentist.
A concentrated beam of radiation is used to damage the trigeminal nerve to try and block the nerve from sending pain signals. You will not need a general anaesthetic and there is no need to make an incision (a cut) in your cheek. It can take a few weeks for the procedure to take effect but it can offer pain relief for several months or years.
If trigeminal neuralgia is caused by a blood vessel pressing on the nerve, this procedure can provide relief by moving the blood vessel away. It is a major procedure which involves opening up the skull, and is carried out under general anaesthetic by a neurosurgeon.
More detail on the surgical procedures for trigeminal neuralgia can be found in the section about trigeminal neuralgia on the NHS Choices website.
How can I manage trigeminal neuralgia myself?
Living with the pain of trigeminal neuralgia can be draining but there are some options you can try to manage your trigeminal neuralgia yourself probably in combination with drug treatment. Complementary and alternative therapies are increasingly recognised as being useful for self management. For example acupuncture, although not effective for everyone, has been reported to give some temporary pain relief.
It can be useful to keep a symptom diary to see if there is any pattern to your attacks or any trigger factors that set them off. If you can identify trigger factors, then you can take steps to avoid them where possible, for example by:
- avoiding sitting near an open window or by wearing a scarf if your pain is triggered by draughts or a breeze
- using a straw if hot or cold drinks cause pain in some parts of your mouth
- avoiding particular foods if these are triggers for you. Caffeine, citrus fruits and bananas are amongst the possibilities.
Activities of daily living
- if your pain interferes with, or is made worse by, biting or chewing, you may find that eating food of a softer consistency or liquidising food helps. If you are losing weight because of difficulties with eating, you may need to supplement or enrich your meals and you should ask your GP to refer you to a dietician.
- cleaning your teeth, washing or shaving can be more difficult so you may need to change how you do these daily tasks.
- an occupational therapist may be able to assess the impact of your pain and provide suggestions and equipment to help.
Lack of sleep and depression
Dealing with trigeminal neuralgia can be very draining and lead to lack of sleep, isolation and depression. It is good to stay as positive as possible. Your MS nurse or GP may be able to refer you to a clinical psychologist for support in staying positive. This may include cognitive behavioural therapy (CBT) which encourages new ways of thinking and changes in behaviour.
Seeing a psychologist or using psychological techniques doesn’t mean that the pain isn’t genuine and physical. These approaches can be just one of the ways that helps you deal with your pain and manage it well.
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