Supporting Someone with Trigeminal Neuralgia (TN) 

Trigeminal neuralgia can have a profound effect on not only the individual suffering but also on close friends and family. Trigeminal Neuralgia is unpredictable and therefore can be difficult to cope with, both for the patient and the carer. Not knowing when the next attack will strike can cause fear and depression. However, some mechanisms can be used in supporting Trigeminal Neuralgia pain. And therefore improve the life of the patient and carer.

To the outside world, it is difficult for people to comprehend exactly what Trigeminal Neuralgia is. Trigeminal Neuralgia pain can differ, during an attack, it can be almost debilitating. As a carer, you need to be the key in supporting their Trigeminal Neuralgia and explain to others what is happening if an attack should occur outside of the home.

Signs of an attack

You, as the carer, will be aware of some of the indications of a Trigeminal Neuralgia attack:

• Sudden immobility or silence
• A physical jerk
• Involuntary facial twitches
• A scream or shout of pain

Whilst Trigeminal Neuralgia can occur without provocation, usually, an attack is brought on by a trigger. For example, a trigger could be a cold wind blowing against the face, brushing one’s teeth or eating a meal. The sufferer will tend to avoid the triggers, not wishing to bring on an attack. Therefore, it is important to think of ways around these issues. As it is paramount that the sufferer can continue to lead as normal a life as possible.

Research into supporting Trigeminal Neuralgia, and building your knowledge

• Trigeminal Neuralgia is a scarcely known condition so the carer must do research. Your research should keep you knowledgeable and well-informed about their condition.
• This can include the latest developments in medication, surgical interventions and any additional help that may available.
• The fact that you have found the TNA website is a great start in your research. Please look at all of the information under all of the available headings.
• If the sufferer is not already a member of the association, may we urge you to encourage them to join us. There are many benefits available not least being able to access the members’ area. Under which are zoom meetings with world-known Neurologists and Neurosurgeons. It is also important to keep members up to date as the website is constantly being updated with new information.
• The telephone and email helplines are also invaluable sources of information and reassurance
• The number of regional local support groups is growing and information and locations of these groups are included on the website. These support groups are a great way for meeting other sufferers. Hearing their stories and giving and receiving tips, advice and hope. They also lessen the feeling of isolation or even depression.

Medications and Treatment

• The sufferer may have visited several practitioners over the years and tried various medications. Some of which may have helped and some not, though these are different for everyone some are promising.
• Several types of medication can be prescribed and very often different ones need to be taken before the most suitable is found. however, in some cases, people can react badly to anti-convulsants and this has to be carefully monitored. Some people may have tried dozens of different medications and treatments. Though some have suffered severe side effects they deal with these for the sake of getting rid of the pain. In these cases, they will need additional care and support from you.
• Be aware that high doses of medication may make sufferers mentally slow, have a muddled thought process and be forgetful and confused. They also may be exhausted, depressed and sleep more.
• The leaflets in the information packs that are sent out when a person joins the association are invaluable. The one titled ‘Treating TN with Medication’ is extremely useful for understanding the various medications available. This explains not only the many different types of medication but how to take them and the maximum dose.
• The leaflet entitled ‘Surgical Procedures for Treating TN’ is also very useful to understand what surgical interventions may be available if needed.

Living A Normal Life

• Encourage your loved one or friend to live as normal a life as possible within the bounds of the condition.
• There is a real danger that they will want to stop socialising and going out of their home. This means there is a large chance they may become isolated by their fear of having an attack
• Devise a plan of action as to what you should do should an attack occurs when you are out of the house. For example at a dinner party, a meeting, playing sport etc. Inform people who you will be with what may happen if an attack occurs and how it will be dealt with. Think in advance of a quiet place for the person to take themselves off to.
• Holidays can cause great fear for a sufferer especially if they have to take public transport, for example flying. Encourage the booking of holidays as they are so important to both the sufferer and the carer. Holidays in the UK might be preferable where you can use your own transport. Though as long as you have a plan of action, do not exclude holidays abroad where you may have to fly. Think of booking airline seats near a toilet or at the front/back of the plane to enable an escape to a quiet place.

Other ways of supporting Trigeminal Neuralgia

• If you are looking after or just visiting someone who is affected by TN, remember that your care and attention is invaluable. It is of great comfort for patients to be with a loved one who they know has done everything possible to understand their condition and who is patient and sympathetic.
• The pain may strike when talking, so be aware that conversation may be halted or may cease altogether. Therefore be guided by them and just remember that your presence and kind words do much to alleviate their distress.
• If an attack strikes during mealtimes, eating may be slow or stop completely. Therefore it may be helpful to have some recipe adaptations for soft food during periods of attacks.
• If you are in company when this happens, you may be aware that the sufferer has ‘seized up’. It would be helpful if you could take over the conversation until they have recovered.
• Because anti-epileptic drugs used to treat TN are designed to suppress electrical impulses firing in the brain, they also have the same effect on other brain functions such as memory and thought processes. Sufferers may have trouble with word recall, repeat themselves, forget important dates or arrangements and appear confused or muddled. To some, this is a great source of embarrassment and it can make them extremely self-conscious. Try not to take over the organisation of their lives, but if you can ‘catch them when they fall’ and not get irritated by their forgetfulness, it would be of great help.
• There may be periods of complete or partial remission from TN for weeks, months or possibly years, but there is a likelihood that it will return. This can be quite devastating for the sufferer if this happens, so be prepared for this setback.

Attending Medical appointments

• If at all possible, it is a good idea to accompany your Trigeminal Neuralgia sufferer to all medical appointments. This is extremely important if they are in pain as they may be unable to communicate coherently. If they are taking large doses of medication this may well affect their memory and thought process during discussions with the medic.
• Before appointments, encourage the use of keeping a pain diary for at least a month noting when the pain occurs, how long it lasts and what triggers it, etc. It may be useful for the carer to keep an eye on this to ensure correct record-keeping. This helps enormously to give accurate information to the health professional.
• As well as the above, having written notes on the patient’s TN medical history including key dates, medications taken and any surgical interventions is all invaluable information to have with you.
• In an emergency, and if the pain is unbearable it is sometimes possible to get immediate (but temporary) relief from a ‘nerve block’. This can be administered by a dentist or a dental anaesthetist at your local A&E department.

Look After Yourself

• As a carer, you will need to be patient, protective and supportive, have a positive attitude and show compassion. This all creates a demanding role and therefore you must look after yourself.
• As you try to balance work, family and caregiving, your own physical and emotional health can be affected over time. Remember that your health is important not only for your own quality of life but also for the person you care for. It’s important that you aside some time for yourself. This is not a luxury!
• You must keep up the friendship and company of others and make sure your family and friends are aware of the situation and ensure they are supportive to help you and lighten your load.