INVISIBLE SUFFERING
It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly – as in the case of a TN patient – they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than a hidden pain, but the suffering can be as bad, if not worse. TN is an invisible disability and, sadly, the prognosis for TN is not good. Often the outlook is that it will get worse, not better.
GOOD DAY AND BAD DAYS
TN is unpredictable. It can sometimes be triggered, for example, by a facial movement such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions though, the same ‘trigger’ will have no affect at all. It is therefore easy to believe the patient is ‘putting it on’, making a fuss or deliberately avoiding a situation. This is not the case.
There may be periods of complete or partial remission, possibly even for years, but these are likely to lessen with time. Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it is not much fun.
FEAR AND DEPRESSION
TN is a progressive condition that requires treatment with drugs or surgery. The drugs can have unpleasant side-effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds other characteristics to the illness – that of fear and very often of depression.
It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. The pain is quite literally unbearable and debilitating – like a jolt of lightning – and can be quite terrifying. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be ‘zap-zap-zap’ continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. It is described as possibly the world’s worst pain. The patient is quite likely to appear to be paranoid about the return of the pain. TN does that to you!
SOCIAL DIFFICULTIES
The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company at all, really! If the TN patient is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion.
They are sometimes even seemingly unresponsive to their nearest and dearest, but not through choice. If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.
The patient may have visited several practitioners over many years; been disbelieved and patronised; they may have tried dozens of treatments and therapies; been nauseated and debilitated by the medication; they may have lost their quality of life; suffered desperation and disillusionment.
This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraine or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.
JUST BEING THERE
If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations. You may only get a grunt by way of response! But just your presence and kind words do much to alleviate their distress.
Try not to make them feel as if they are a burden even though this may be difficult. To be in the company of a fellow patientis comforting beyond belief but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.
HELP OTHERS UNDERSTAND TN
The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have ‘seized up’ and it would be helpful if you could take over the conversation until he/she recovers, or explain to friends why your nearest and dearest has stopped ‘mid-chew’. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.
PERSONAL HYGIENE AND INTIMACY
The patient may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary.
In the case of couples, you might find you have to sacrifice activities that you both once enjoyed together. The disease may also affect the intimate side of the relationship since the patient will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such.
LIVING WITH DRUG SIDE EFFECTS
Because the anticonvulsant drugs used to treat TN are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. Patients may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, 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 or temporary foolishness, it would be a great help. The medication may also make them extremely tired and sleepy. They may be struggling to achieve simple daily tasks while experiencing overwhelming fatigue.
EMERGENCY TREATMENT
In an emergency, it is sometimes possible to get immediate (but, of course, temporary) relief from a ‘nerve block’ which is injected anaesthetic given in a hospital or pain clinic. It is always a good idea to take along notes about the patient’s TN medical history because this is invaluable and even the best carer cannot be expected to remember it all.
As a carer you will need to be protective, supportive and show an understanding of what the person with TN is going through. You will need a positive attitude and perseverance as well ascompassion, patience and sensitivity. All of which can place great demands on you, so please make sure that you also consider your own health and well-being. YOU need to stay well to look after the TN patient!
GET TO KNOW THE FACTS
It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated. The more you read up on the subject, the better will be your understanding of what the patient is going through and the more you will be able to help and advise them.
The best starting point may be reading a book on TN or coping with pain. For details of recommended books please see the TNA UK website (https://www.tna.org.uk/. Some titles are available to buy from our website shop.
