Caring for someone with TN

Caring For Someone with Trigeminal Neuralgia (TN)

Trigeminal neuralgia can have a profound effect on not only the individual suffering, but also on those around them and family, friends and relationships are all likely to be affected. TN 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, there are mechanisms that can be used to greatly help in the management of TN and therefore improve the life of the patient and carer.

To the outside world it is difficult for people to comprehend exactly what TN is, the severity of the pain during an attack and how it is such a debilitating condition. As a carer you will therefore need to be prepared to 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 the some of the indications that a patient may be experiencing when they are having an attack:

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

Whilst TN 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 the pain of an attack.  Therefore, it is important to devise ways together around these issues so that the they can continue to lead as normal a life as possible.

How you can help by researching and building your knowledge
  • TN is a little-known condition and it is very important that as a carer, you research and keep yourself as knowledgeable and as well informed as you possibly can about the 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 and knowledge building and so please do 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 as there are many benefits available not least being able access the members tab under which there is a host of valuable information. It is also important to keep membership up to date as the website is constantly being updated with new information.
  • The telephone and email helplines are also an invaluable source 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 for giving and receiving tips, advice and hope. They also lessen the feeling of isolation.
Medications and treatment
  • The sufferer may have visited several practitioners over the years and tried various medications, surgical interventions and other ‘self-help’ remedies some of which may have helped and some not.
  • There are several types of medication that can be prescribed and very often different ones need to be taken before the most suitable is found; however, in some cases some people react badly to anti-convulsants and this has to be carefully monitored. Some people may have tried dozens of different medications and treatments over time and suffered debilitating side effects which may have caused desperation and disillusionment. 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 for both the sufferer and the carer. The one entitled ‘Treating TN with Medication’ is extremely useful for understanding the various medications available for TN, 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.
Helping the sufferer live as normal a life as possible
  • 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 the home. and become isolated by their fear of having an attack in a public place.
  • Between you, devise a plan of action as to what you would do should an attack occur when you are out, for example at a dinner party, a meeting, dinner at a restaurant, 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. If attending a meeting, a concert or travelling on public transport consider sitting on an aisle seat to enable a quick exit and have a quiet word with restaurant staff or organisers etc. of what may happen and reassure them.
  • Holidays can be the cause of 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. Initially maybe look at holidays in the UK where you can use your own transport but as long as you have a plan of action do not exclude holidays abroad where you may have to fly. Think of booking aisle seats near a toilet at the front/back of the plane to enable an escape to a quiet place and inform flight attendants of what may happen and how it will be dealt with should an attack occur. Maybe carry a warm scarf to protect against air conditioning.
Strain on relaionships
  • When a person has a chronic pain condition such as TN, it can be very stressful and may affect both the sufferer and the carer.
  • Communication is key and so take the time to understand each other’s emotions and devise an action plan together of how to address any concerns each of you may have.
  • Give each other space and time to be independent.
  • It is important to nurture the relationship and to try to continue with normality and going out and doing joint activities etc.
Other ways in which you can help
  • 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 halting 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 hesitant and so 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’ and it would be helpful if you could take over the conversation until they have recovered and give a brief explanation to friends as to what is happening.
  • 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 process.  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 are able to ‘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 set-back.
Attending medical appointments
  • If at all possible, it is a good idea to accompany your TN sufferer to all medical appointments. This is extremely important if they are in pain as they may be unable to communicate coherently and if they are taking large doses of medication this may well affect their memory and thought process during discussion 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 totally 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 anesthetist at your local A&E department.
Please 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 it is important that you 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 that of the person you care for. It is essential that you set aside some time for yourself. This is not a luxury!
  • It is important that you 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.