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NHS Choices Syndication


Neuralgia, trigeminal

Causes of trigeminal neuralgia

Although the exact cause is not known, trigeminal neuralgia is often thought to be caused by compression of the trigeminal nerve or an underlying condition affecting this nerve.

The trigeminal nerve

The trigeminal nerve (also called the fifth cranial nerve) is the largest nerve inside the skull. You have two trigeminal nerves, one in each side of your face. Small branches from different parts of the face join into three major nerve branches. These are:

  • the upper branch (ophthalmic)  which carries sensory information from the skin above the eye, forehead and front of the head
  • the middle branch (maxillary)  which carries sensory information from the skin through the cheek, side of the nose, upper jaw, teeth and gums
  • the lower branch (mandibular)  which carries sensory information from the skin through the lower jaw, teeth and gums

These branches enter the skull through three different routes and then join together in what is called the Gasserian ganglion, before connecting to the brainstem in the part of the skull called the posterior fossa. 

Trigeminal neuralgia can involve one or more branches of the trigeminal nerve. The maxillary and mandibular branches are affected most often, and the ophthalmic branch is the least commonly affected.

Pressure on the trigeminal nerve

Evidence suggests that in up to 95% of cases, the cause of trigeminal neuralgia is pressure on the trigeminal nerve close to where it enters the brain stem (the lowest part of the brain that merges with the spinal cord), past the Gasserian ganglion.

In most cases, this pressure seems to be caused by an artery or vein compressing the trigeminal nerve, although it’s not known why this happens.

It’s also not clear exactly why this pressure can cause painful attacks, as not everyone with a compressed trigeminal nerve will experience pain. It may be that, in some people, the pressure on the nerve wears away its protective outer layer called the myelin sheath, which may cause uncontrollable pain signals to travel along the nerve. 

However, this does not fully explain why periods of remission (periods without symptoms) can occur and why pain relief is immediate after a successful operation to move the blood vessels away from the nerve.

Other underlying causes

Other reasons why the trigeminal nerve can become compressed or damaged include:

  • a tumour (a growth or lump)
  • a cyst (fluid-filled sac)
  • arteriovenous malformation (an abnormal tangle of arteries and veins)
  • multiple sclerosis (MS)  a long-term condition that affects the central nervous system (the brain and spinal cord)
Published Date
2014-08-06 10:17:06Z
Last Review Date
2014-07-21 00:00:00Z
Next Review Date
2016-07-21 00:00:00Z
Classification






NHS Choices Syndication


Neuralgia, trigeminal

Diagnosing trigeminal neuralgia

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 initially, rather than their GP.

If you visit your dentist, they will ask you questions about your symptoms and investigate your facial pain using a dental X-ray and other means to look for other more common causes, such as a dental infection or cracked tooth. 

If the dentist cannot find a cause, it is important not to undergo unnecessary treatment such as a root canal filling or an extraction, even though you may be convinced that it is a tooth problem. If your dentist cant find anything wrong, do not try to persuade them to remove a particular tooth, as this will not solve the problem.

Often, the diagnosis of trigeminal neuralgia is made by a dentist, but if you have already seen your dentist and they have not been able to find an obvious cause of your pain, visit your GP.

Seeing your GP

There is no specific test for trigeminal neuralgia, so a diagnosis is largely based on your symptoms and your description of the pain.

If you have experienced facial pain, your GP will ask you questions about your symptoms, such as how often they occur, how long the pain attacks last and which areas of your face are affected. The more details about your pain you can provide, the better.

Your GP will consider other possible causes of your pain and may also examine your head and jaw to identify which parts are painful.

Ruling out other conditions

An important part of the process of diagnosing trigeminal neuralgia involves ruling out other conditions that can also cause facial pain.

By asking about your symptoms and carrying out an examination, your GP may be able to rule out other conditions, such as:

  • migraine
  • joint pain in the lower jaw
  • giant cell arteritis (temporal arteritis)  a condition in which medium and large arteries in the head and neck become inflamed and cause pain in the jaw and temples
  • a possible injury to one of the facial nerves

Your medical, personal and family history will also need to be taken into consideration when determining possible causes of your pain.

For example, trigeminal neuralgia is less likely if you are under 40 years old, and multiple sclerosis (MS) may be more likely if you have a family history of the condition or if you have some other form of this condition. However, trigeminal neuralgia is very unlikely to be the first symptom of MS.  

MRI scans

If your GP is not sure about your diagnosis, or if you have unusual symptoms, they may refer you for a magnetic resonance imaging (MRI) scan of your head.

An MRI scan uses strong magnetic fields and radio waves to create detailed images of the inside of your head. It can help identify potential causes of your facial pain, such as sinusitis (inflammation of the lining of the sinuses), tumours on one of the facial nerves, or nerve damage caused by MS.

An MRI can also sometimes detect whether a blood vessel in your head is compressing one of the trigeminal nerves, which is one of the main causes of trigeminal neuralgia. However, highly sophisticated MRI scans may be needed to show this accurately, although this may not necessarily be helpful, because not everyone with a compressed trigeminal nerve has trigeminal neuralgia.

Published Date
2014-08-06 10:19:20Z
Last Review Date
2014-07-21 00:00:00Z
Next Review Date
2016-07-21 00:00:00Z
Classification






NHS Choices Syndication


Neuralgia, trigeminal

Introduction

Trigeminal neuralgia is a sudden, severe facial pain, described as sharp, shooting or like an electric shock.

It usually occurs in sudden short attacks lasting from a few seconds to about two minutes, which stop just as abruptly.

In the vast majority of cases it affects part or all of one side of the face, with the pain most commonly felt in the lower part of the face. Very occasionally it affects both sides of the face, but not normally at the same time.

People with the condition may experience attacks of pain regularly for days, weeks or months at a time. In severe cases, attacks may occur hundreds of times a day.

It’s possible for the pain to improve or even disappear altogether for several months or years at a time (known as a period of remission), although these periods of remission tend to get shorter with time. Some people may then go on to develop a more continuous aching, throbbing and burning sensation, sometimes accompanied by the sharp attacks.

Typically, the attacks of pain are brought on by activities that involve lightly touching the face, such as washing, eating and brushing the teeth, but they can also be triggered by wind (even a slight breeze or air conditioning) or movement of the face or head. Sometimes, the pain can occur without any trigger whatsoever.

Living with trigeminal neuralgia can be very difficult and it can have a significant impact on a person’s quality of life, resulting in problems such as weight loss, isolation and depression.

Read more about the symptoms of trigeminal neuralgia.

When to seek medical advice

You should see your GP if you experience frequent or persistent facial pain, particularly if standard painkillers such as paracetamol and ibuprofen do not help and a dentist has ruled out any dental causes.

Your GP will try to identify the problem by asking about your symptoms and ruling out conditions that could be responsible for your pain.

However, diagnosing trigeminal neuralgia can be difficult, and it can take a few years for a diagnosis to be confirmed.

Read more about diagnosing trigeminal neuralgia.

What causes trigeminal neuralgia?

In the vast majority of cases, trigeminal neuralgia is caused by compression of the trigeminal nerve. This is the largest nerve inside the skull, which transmits sensations of pain and touch from your face, teeth and mouth to your brain.

This compression is usually caused by a nearby blood vessel pressing on part of the nerve inside the skull.

In rare cases, trigeminal neuralgia can occur as a result of damage to the trigeminal nerve, caused by an underlying condition such as multiple sclerosis (MS) or a tumour.

Read more about the causes of trigeminal neuralgia.

Who is affected

It’s not clear exactly how many people are affected by trigeminal neuralgia, but the condition is thought to be rare.

Some studies have suggested that around 27 in every 100,000 people are diagnosed with the condition in the UK each year, although this figure is probably too high as the condition tends to be over-diagnosed by doctors. Other estimates have suggested that there are about 6,500 new cases diagnosed each year in the UK.

The condition affects women more often than men and is rare in people under the age of 40, although it can occur in younger people. Most cases are first seen in people between the ages of 50 and 60.

How trigeminal neuralgia is treated

Trigeminal neuralgia is usually a long-term condition, and the periods of remission often get shorter over time. There is currently no definitive cure, but most cases can be controlled to at least some degree with treatment.

The first treatment offered will usually be with an anticonvulsant medication (usually used to treat epilepsy) called carbamazepine. To be effective, this medication needs to be taken several times a day, with the dose gradually increased over the course of a few days or weeks so that high enough levels of the medication can build up in your bloodstream.

Unless your pain starts to diminish or disappears altogether, the medication is usually continued for as long as is necessary, sometimes for many years. If you are entering a period of remission and your pain goes away, stopping the medication should always be done slowly over days or weeks, unless you are advised otherwise by a doctor.

Carbamazepine was not originally designed to treat pain, but it can help relieve nerve pain by slowing down electrical impulses in the nerves and reducing their ability to transmit pain messages.

If this medication is ineffective, unsuitable or causes too many side effects, you may be referred to a specialist to discuss alternative medications or surgical procedures that may help.

There are a number of minor surgical procedures that can be used to treat trigeminal neuralgia – usually by damaging the nerve to stop it sending pain signals  but these are generally only effective for a few years.

Alternatively, your specialist may recommend having surgery to open up your skull and move away any blood vessels compressing the trigeminal nerve. Research suggests this operation offers the best results in terms of long-term pain relief, but it is a major operation and carries a risk of potentially serious complications, such as hearing loss, facial numbness or, very rarely, a stroke.

Read more about treating trigeminal neuralgia.

Published Date
2014-08-06 10:15:00Z
Last Review Date
2014-07-21 00:00:00Z
Next Review Date
2016-07-21 00:00:00Z
Classification
Aches, pains and soreness,Nerve pain,Nerves,Postherpetic neuralgia,Shingles,Trigeminal neuralgia




Trigeminal neuralgia – Treatment – NHS Choices



































































Trigeminal neuralgia – Treatment 

Treating trigeminal neuralgia  

There is no definitive cure for trigeminal neuralgia, but there are a number of treatments available that can offer some relief from the pain.

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 those cases where medication is ineffective or causes too many side effects.

Avoid triggers

The painful attacks associated with trigeminal neuralgia can sometimes be triggered or made worse by a number of different things. Therefore, in addition to your medical treatment, it may help to try to avoid these triggers, if possible.

For example, if your pain is triggered by wind or even a draught in a room, it may help to avoid sitting near open windows or the source of air conditioning, and wearing a scarf wrapped around your face in windy weather. A transparent dome-shaped umbrella can also protect your face from the weather.

Hot, spicy or cold food or drink may also trigger your pain, so avoiding these can help. 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 is important to eat nourishing meals, however, so if you are having difficulty chewing, consider eating mushy foods or liquidising your meals. 

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 such as paracetamol are not effective in treating trigeminal neuralgia, you will normally be prescribed an alternative medication, such as an anticonvulsant medication (usually used to treat epilepsy) to help control your pain.

These medications were not 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 are in remission.  Unless otherwise instructed by your GP or specialist, it is important to build up the dosage 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 anticonvulsant carbamazepine is currently the only medication licensed for the treatment of trigeminal neuralgia in the UK. It can be very effective initially, but may become less effective over time.

You will usually need to take this medicine at a low dose once or twice a day, with the dose slowly increasing 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 urticaria (hives)

You should speak to your GP if you experience any persistent or troublesome side effects while you are taking carbamazepine, especially 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. You should immediately report any suicidal feelings to your GP. If this is not possible, call NHS 111

Other medications

Carbamazepine may stop working over time. If this occurs, 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 (for example, at a pain clinic).

In addition to carbamazepine, there are a number of other medications that 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 have not undergone rigorous clinical trials to determine whether they are effective and safe to treat the condition.

However, this is largely only because trigeminal neuralgia is a rare condition, and clinical trials are difficult to carry out on such a painful condition because giving some people an inactive, “dummy” medication (placebo) to compare these medications to would be unethical and impractical.

However, many specialists will prescribe an unlicensed medication if they think it is 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 is unlicensed and discuss possible risks and benefits with you.

With most of these medications, the side effects can be quite difficult to cope with initially. Not everyone experiences side effects, but if you do, try to persevere because they do tend to diminish with time or at least until the next dosage increase, when you may find a further period of adjustment is necessary.  Talk to your GP if you are finding the side effects unbearable.

Surgery and procedures

If medication does not 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.

There a number of procedures that have been used to treat trigeminal neuralgia, so you will need to discuss the potential benefits and risks of each treatment with your specialist before making a decision. It is wise to be as informed as possible and to make the choice that it right for you as an individual.

There is no guarantee that one or any of these procedures will work for you but, once you have had a successful procedure, you won’t need to take your pain medications unless the pain returns. If one procedure does not work, you can always try another or remain on your medication temporarily or permanently.

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

Percutaneous procedures

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

These are known can “percutaneous” (through the skin) procedures, and they are carried out using X-rays to guide the needle or tube into the correct place while you are heavily sedated with medication or under a general anaesthetic (where you are asleep).

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

  • glycerol injections  where a medication called glycerol in 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 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 are usually able to go home the same day, following your treatment.

Overall, all of these procedures are similarly effective in relieving trigeminal neuralgia pain, although there can be complications with each, and these vary with the procedure and the individual. The pain relief will usually only last a few years, and sometimes only a few months. Sometimes these procedures do not work at all.

The major side effect of these procedures is numbness of part or all the side of the face, and this 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 anesthesia 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 problems moving the facial muscles.

Stereotactic radiosurgery

An alternative way to relieve pain by damaging the trigeminal nerve that doesn’t involve inserting anything through the skin is stereotactic radiosurgery. This is a fairly new treatment that uses a concentrated beam of radiation to deliberately damage the trigeminal nerve where it enters the brainstem.

Stereotactic radiosurgery does not require a general 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) and your head, complete with the frame attached, is held in a large machine for an hour or two (which may make you feel claustrophobic) while the radiation is given. The frame and pins are then removed, and you are able to go home after a short rest.

It can take a few weeks  or sometimes many months  for this procedure to take effect, but it can offer pain relief for some people for several months or years. Studies into this treatment have shown similar results to the other procedures mentioned above.

The most common complications associated with stereotactic radiosurgery include facial numbness and pins and needles (paraesthesia) in the face. This 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 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.

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

During MVD, the surgeon will make an incision in your scalp, behind your ear, and remove a small circular piece of skull bone. They will 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 effective in easing or completely stopping the pain of trigeminal neuralgia. It provides the longest lasting relief, with some studies suggesting that pain only recurs in about 30% of cases within 10-20 years of surgery.  Currently, this is the closest possible cure for trigeminal neuralgia.

However, it is an invasive procedure and carries a risk of potentially serious complications, such as hearing loss, stroke and even death (in around 1 in every 200 cases)  although it only rarely causes facial numbness.

More information 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.

Research has shown that groups that have support from health care professionals provide high-quality help, which can significantly improve your ability to manage this rare condition. Learning from others how to cope can help remove the fear of more pain and reduce the risk of depression.

However, you need to be wary of potentially unreliable information you may find elsewhere, especially if offering “cures” for the condition. There is a great deal of misinformation on the internet, so do your research only on reliable websites, not on open forums or on social media.

There are a number of research projects running both in the UK and abroad to determine the cause of this condition and to find new treatments, including new medications, so there is always hope on the horizon.

Page last reviewed: 22/07/2014

Next review due: 22/07/2016

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Comments

The 13 comments posted are personal views. Any information they give has not been checked and may not be accurate.

User905462 said on 21 September 2014

I was at my dentist in 2005 with what I thought was toothache and he luckily recognised it as TN after seeing a young lady GP who confirmed this and told me there is no cure?? I went to a private hospital who put me in contact with a surgeon at a Liverpool hospital. I was aged 52. In early 2007 I had an MD operation and was completely without pain, previously I would have said on a scale of 1-10 my pain was definately 10 and it was getting more frequent each week so it was almost always there. Unfortunately a few days ago it came back, only slightly just now but I know what is to come. I will see a GP in the next few days. 7 years totally without pain is a blessed relief. But I’m going to be greedy and ask for more. If it worked for me it can work for others too. Do not give up. Keep pushing for help.

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Wolvesfan said on 19 September 2014

I had MVD some 14 years ago and I have been pain free ever since – I am very grateful to have had this operation and have no regrets about going down this road. The medication had run it’s course and at the end was not giving any relief at all. Life had become intolerable. I was in constant pain and had lived with the pain for 10 years prior to the operation.

I was visiting the Royal London Hospital attending its Pain Clinic regularly when my Walsall GP at the time asked me to find a neurosurgeon. I manage to get a referral to a neurosurgeon at the same hospital. I was only in hospital for two days after the operation and it took about 12 weeks to return to work. I would highly recommend this procedure if this is open to you…..the pain was so bad that any relief, even short-lived was a risk worth taking,,,,..and gratefully I am in my 14th year of being pain free.

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Ka63 said on 18 February 2014

Had my MVD in Dec 2012 after suffering TN for 2 years initially controlled by carbamazepine then switched to gabapentin after a reaction . Was referred to an oral surgeon had many scans 3 MRIs no cause found so given choice pain clinic or referral to neurosurgeon chose neurosurgeon an best decision made he said on first meeting said could help me and get off the medications !! Had another MRI assume at different angle as this showed the cause three months later had MVD the blood vessel was attached to 4th and 5th nerve and cerebellum he wasn’t sure post op how successful recovery would be but it was back at work 8weeks after and off all drugs , 14 months on, get occasional headaches around scar into neck,and face feels like TN returning but thankfully it doesn’t seems worse when tired . But compared to before op my life improved dramatically but fear of TN returning always there

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Jodie_16 said on 12 February 2014

I had my MVD at Salford Royal on 21st January so I’m on my way to recovering now and so far (touch wood) it seems to have worked.
As I am aged 31 my dr, specialist and surgeon were all keen to get me off the carbamazepine and felt that I was a suitable candidate for MVD. I was taking 1600mg daily plus 20+ painkillers (tramadol, codeine, paracetamol, ibuprofen) when at its worst last summer but recently reduced it to 1000mg daily and just 2 paracetamol and ibuprofen on most days.
Although my MRI results came back inconclusive both my specialist and surgeon said that this did not mean it wasn’t TN as in a lot of cases MRI scans do not show the blood vessel (because of the angle of the scan). So my procedure was explorative in hope that there was a blood vessel and they could perform the MVD… And thankfully they found what they believed to be the culprit and managed to go ahead with the procedure.
Three weeks later the worst of my post op pain has gone and my wound is healing well, I still have a ringing in my left ear but this should go soon…AND most importantly I have started to reduce my carbamazepine and up to now not having any TN symptoms so although it’s early days, feeling really hopefully that the procedure has worked 🙂

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RomDob said on 25 January 2014

I suffered from Trigeminal Neuralgia (TN) some years ago and the pain was controlled first by Carbamazapene and then Pregabalin. All was well until I was diagnosed with Obstructive Sleep Apnea (OSA) which made me feel so tired that I could not keep awake and slept for up to 12 hours per day and had no useful life.

The treatment was to wear a Continuous Positive Air Pressure (CPAP) mask at night and this was like a miraculous cure – I was able to stay awake all day and did not even need an afternoon nap: I started getting all sorts of long outstanding jobs done and I was able to take some exercise. Life seemed very good until the pressure of the mask on my face caused the TN to flare up and nothing could control the pain. I tried a nose mask and a full face mask but they did not help. I am now on a heavy daily diet of 12 Pregabalin, 8 Paracetamol, 6 Ibuprofen and 8 Tramadol which helps a little but I still can’t wear the CPAP mask and am returned to my miserable state of being permanently exhausted.

A surgeon said that he could help by doing a Microvascular Decompression operation but changed his mind after seeing the MRI scan and referred me to a pain clinic. Here the doctor says that he can do a Peripheral Radiofrequency Thermocoagulation (PRT) and I now await his call for the procedure.

Does anyone know of a mask that I could wear that does not trigger TN?

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Boff1 said on 10 October 2013

Andreaste:

I’ve just been diagnosed too and am in my 30’s. I have started Carbamazepine and after three weeks it has mildly reduced the numbness to my eye but the pain remains the same.

I’m thinking of pushing for the neurologist too, although I haven’t had my MRI yet either.

My pain is in the back of my head and over my right forehead. Numbness to my right eyelid and brow. Side effects are NOT fun.

Hope you’re feeling a bit better by now!

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Andreaste said on 09 September 2013

I’m 30 and have just been diagnosed with TN. I had an MRI scan which didn’t show any findings. I have been given anticonvulsants and am waiting to see what effect they have. I’m not sure if they will help the pain and constant numbness or just the pain?
The docs are managing my pain but I’m not sure if I should be pushing to see a neurologist due to my age. Everyone seems to be affected by moving; eating talking etc. My pain and uncomfort comes when I am still, mainly at night.

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Edinburgh2 said on 23 August 2013

Gladysgirl, I would be interested to hear how you are getting on a year later.

I have had extremely bad TN since I was 9 years old, and have to go to 2400mg of Oxcarbazepine and 600mg of Pregabalin, but because they have long half-lives by the time they have reached a steady peak then my flare-up is mostly finished. I am at the point where I really want another option.

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Gladysgirl said on 13 June 2013

Last year, after 20 years of Tegretol, my TN got so bad, I was willing to consider anything. Had already had microvascular decompression – only lasted a year. Had Cyberknife (sterotactic) done last year – what a relief! They made a mesh mask of my face, I lay on the table for 1 hour with the cyberarm directing radiation, and walked out. I still take some Tegretol (psychological benefit), but, touch wood, no more severe pain. Can’t recommend this highly enough. Run, don’t walk, to your neurologist, neurosurgeon, / radioligist. You will be glad you did. If the pain comes back, they told me that it is never as bad as it was, and the procedure can be repeated. Hope this helps.

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nedor said on 18 May 2013

I have this condition on in November 2012 I had the balloon operation. I did not realise how much numbness I was to encounter. It was explained to me a some loss of sensation. However, it is like being left with a "plastic" face. Some of the sensation has returned but I still have problems around my eye and I feel like I have a ball in my mouth. I cannot eat on the affected side of my mouth as I do not feel or taste food on that side. The worst thing is now some six months on the pain has started to re-occur and the doctor is suggesting medication again. I was taken off medication before as it was eventually, after some ten years, causing toxins in my blood..
I could have another operation but I am really unsure which way to go as the operations are so unpleasant and I am not sure of any success anymore. I am at the stage now where I am becoming quite depressed over the possible continuance of this condition and the constant pain I have.
I would appreciate any advice or comments to help me evaluate.

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User672513 said on 07 May 2012

The main symptom of Trigeminal neuralgia is Neuralgic, Electric shock like pains on any side of the face, mostly right sided. The pain is aggravated on talking. eating, brushing teeth, draft of air or gentle breeze.Paroxysms may last for a minute or two,may recur many times during the day. Period between paroxysms are pain free.
Here i would like to share my knowledge on treating Trigeminal neuralgia with natural herbal remedies. Trigeminal neuralgia cm and Niargim tablets-ayurvedic herbs and resonance homoeopathic remedies,attempt to get your nerves stop overreacting to the slightest stimuli, thus offering you lasting results.They are traditionally believed to work by relieving the sharp shooting pain and the tingling numbness along the nerve path.They also provide the body with energetic information required for the optimal functioning of nerves and also help in strengthening and calming the nerves.

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agonyaunt said on 05 February 2012

I’ve had toothache for 2 months – left side of face, was at top and now bottom too. Seen 2 dentists who x-rayed teeth and could find nothing wrong. First dentist was going to remove a tooth – even though not sure what is causing the problem. Second would not remove teeth for same reason. I’m in agony, not sure if it could be neuralgia. Tried taking ibuprofen – no effect. Can you take paracetamol and ibuprofen together? Can anyone help?

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oldviking said on 02 January 2012

I am 74 and went to the dentist last year after which I developed trigger finger ,when I touched the right side of the face it was like a electric shock .My GP said the dentist may have drilled too deep .My dentists partner offered to extrct the "problem " tooth .when my dentist returned from holiday she said her book said many teeth were wronly extracted and she would send me to the Dental Hospital to make sure they confirmed no tooth problem .Beware tooth extractors !! Meanwhile I had developed more painful attacks ,my GP put me on Tegretol whch stopped the problem .Then a few weeks later she suggested reducing the dose and the problem returned .Back on the orginal dose I gradually reduced to 2 a day and did not have any problems for say 6 months ,but it returned at Xmas so have upped the dose to 3 a day and wait to see the results

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10 surefire ways to beat pain

Practical ways to beat pain, including relaxation tips, breathing exercises and self management courses










NHS Choices Syndication


Neuralgia, trigeminal

Symptoms of trigeminal neuralgia

The main symptom of trigeminal neuralgia is sudden attacks of severe, sharp and shooting facial pain that last from a few seconds to about two minutes.

The pain is often described as an excruciating sensation, similar to an electric shock. The attacks can be so severe that you are unable to do anything during them, and the pain can sometimes bring you to your knees.

Trigeminal neuralgia usually only affects one side of your face. In rare cases it can affect both sides, although not at the same time. The pain can be in the teeth, the lower jaw, upper jaw, cheek and, less commonly, in the forehead or the eye.

You may feel aware of an impending attack of pain, though these usually come unexpectedly.

After the main, severe pain has subsided, you may experience a slight ache or burning feeling. There may also be a constant throbbing, aching or burning sensation between attacks.

You may have episodes of pain lasting regularly for days, weeks or months at a time. It is possible for the pain to then disappear completely and not recur for several months or years (a period known as “remission”). However, in severe cases, attacks may occur hundreds of times a day, and there may be no periods of remission.

Symptom triggers

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

  • talking
  • smiling
  • chewing
  • brushing your teeth
  • washing your face
  • a light touch
  • shaving or putting on make-up
  • swallowing
  • kissing
  • a cool breeze or air conditioning
  • head movements
  • vibrations, such as walking or a car journey

However, pain can occur spontaneously with no triggers whatsoever.

Further problems

Living with trigeminal neuralgia can be extremely difficult, and your quality of life can be significantly affected.

You may feel like avoiding activities such as washing, shaving or eating to avoid triggering pain, and the fear of pain may mean you avoid social activities. However, it’s important to try to live a normal life, and be aware that becoming undernourished or dehydrated can make the pain far worse.

The emotional strain of living with repeated episodes of pain can lead to psychological problems, such as depression. During periods of extreme pain, some people may even consider suicide. Even when pain-free, you may live in fear of the pain returning.

When to see your GP

You should see your GP if you experience frequent or persistent facial pain, particularly if standard painkillers such as paracetamol and ibuprofen do not help and a dentist has ruled out any dental causes.

Your GP will try to identify the problem by asking about your symptoms and ruling out conditions that could be responsible for your pain. Trigeminal neuralgia can be a difficult condition to diagnose, so it’s important to try to describe your symptoms as accurately and in as much detail as possible.

Read more about diagnosing trigeminal neuralgia.

Published Date
2014-08-06 10:16:01Z
Last Review Date
2014-07-21 00:00:00Z
Next Review Date
2016-07-21 00:00:00Z
Classification
Aches, pains and soreness,Face,Trigeminal neuralgia






NHS Choices Syndication


Neuralgia, trigeminal

Treating trigeminal neuralgia

There is no definitive cure for trigeminal neuralgia, but there are a number of treatments available that can offer some relief from the pain.

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 those cases where medication is ineffective or causes too many side effects.

Avoid triggers

The painful attacks associated with trigeminal neuralgia can sometimes be triggered or made worse by a number of different things. Therefore, in addition to your medical treatment, it may help to try to avoid these triggers, if possible.

For example, if your pain is triggered by wind or even a draught in a room, it may help to avoid sitting near open windows or the source of air conditioning, and wearing a scarf wrapped around your face in windy weather. A transparent dome-shaped umbrella can also protect your face from the weather.

Hot, spicy or cold food or drink may also trigger your pain, so avoiding these can help. 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 is important to eat nourishing meals, however, so if you are having difficulty chewing, consider eating mushy foods or liquidising your meals. 

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 such as paracetamol are not effective in treating trigeminal neuralgia, you will normally be prescribed an alternative medication, such as an anticonvulsant medication (usually used to treat epilepsy) to help control your pain.

These medications were not 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 are in remission.  Unless otherwise instructed by your GP or specialist, it is important to build up the dosage 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 anticonvulsant carbamazepine is currently the only medication licensed for the treatment of trigeminal neuralgia in the UK. It can be very effective initially, but may become less effective over time.

You will usually need to take this medicine at a low dose once or twice a day, with the dose slowly increasing 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 urticaria (hives)

You should speak to your GP if you experience any persistent or troublesome side effects while you are taking carbamazepine, especially 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. You should immediately report any suicidal feelings to your GP. If this is not possible, call NHS 111

Other medications

Carbamazepine may stop working over time. If this occurs, 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 (for example, at a pain clinic).

In addition to carbamazepine, there are a number of other medications that 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 have not undergone rigorous clinical trials to determine whether they are effective and safe to treat the condition.

However, this is largely only because trigeminal neuralgia is a rare condition, and clinical trials are difficult to carry out on such a painful condition because giving some people an inactive, “dummy” medication (placebo) to compare these medications to would be unethical and impractical.

However, many specialists will prescribe an unlicensed medication if they think it is 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 is unlicensed and discuss possible risks and benefits with you.

With most of these medications, the side effects can be quite difficult to cope with initially. Not everyone experiences side effects, but if you do, try to persevere because they do tend to diminish with time or at least until the next dosage increase, when you may find a further period of adjustment is necessary.  Talk to your GP if you are finding the side effects unbearable.

Surgery and procedures

If medication does not 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.

There a number of procedures that have been used to treat trigeminal neuralgia, so you will need to discuss the potential benefits and risks of each treatment with your specialist before making a decision. It is wise to be as informed as possible and to make the choice that it right for you as an individual.

There is no guarantee that one or any of these procedures will work for you but, once you have had a successful procedure, you won’t need to take your pain medications unless the pain returns. If one procedure does not work, you can always try another or remain on your medication temporarily or permanently.

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

Percutaneous procedures

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

These are known can “percutaneous” (through the skin) procedures, and they are carried out using X-rays to guide the needle or tube into the correct place while you are heavily sedated with medication or under a general anaesthetic (where you are asleep).

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

  • glycerol injections  where a medication called glycerol in 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 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 are usually able to go home the same day, following your treatment.

Overall, all of these procedures are similarly effective in relieving trigeminal neuralgia pain, although there can be complications with each, and these vary with the procedure and the individual. The pain relief will usually only last a few years, and sometimes only a few months. Sometimes these procedures do not work at all.

The major side effect of these procedures is numbness of part or all the side of the face, and this 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 anesthesia 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 problems moving the facial muscles.

Stereotactic radiosurgery

An alternative way to relieve pain by damaging the trigeminal nerve that doesn’t involve inserting anything through the skin is stereotactic radiosurgery. This is a fairly new treatment that uses a concentrated beam of radiation to deliberately damage the trigeminal nerve where it enters the brainstem.

Stereotactic radiosurgery does not require a general 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) and your head, complete with the frame attached, is held in a large machine for an hour or two (which may make you feel claustrophobic) while the radiation is given. The frame and pins are then removed, and you are able to go home after a short rest.

It can take a few weeks  or sometimes many months  for this procedure to take effect, but it can offer pain relief for some people for several months or years. Studies into this treatment have shown similar results to the other procedures mentioned above.

The most common complications associated with stereotactic radiosurgery include facial numbness and pins and needles (paraesthesia) in the face. This 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 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.

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

During MVD, the surgeon will make an incision in your scalp, behind your ear, and remove a small circular piece of skull bone. They will 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 effective in easing or completely stopping the pain of trigeminal neuralgia. It provides the longest lasting relief, with some studies suggesting that pain only recurs in about 30% of cases within 10-20 years of surgery.  Currently, this is the closest possible cure for trigeminal neuralgia.

However, it is an invasive procedure and carries a risk of potentially serious complications, such as hearing loss, stroke and even death (in around 1 in every 200 cases)  although it only rarely causes facial numbness.

More information 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.

Research has shown that groups that have support from health care professionals provide high-quality help, which can significantly improve your ability to manage this rare condition. Learning from others how to cope can help remove the fear of more pain and reduce the risk of depression.

However, you need to be wary of potentially unreliable information you may find elsewhere, especially if offering “cures” for the condition. There is a great deal of misinformation on the internet, so do your research only on reliable websites, not on open forums or on social media.

There are a number of research projects running both in the UK and abroad to determine the cause of this condition and to find new treatments, including new medications, so there is always hope on the horizon.

Published Date
2014-08-06 10:24:30Z
Last Review Date
2014-07-21 00:00:00Z
Next Review Date
2016-07-21 00:00:00Z
Classification


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