Caring for someone with TN
Caring For Someone with Trigeminal Neuralgia (TN)
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 also cause fear and depression. However, there are mechanisms that can be used that greatly help in the management of TN and therefore improve the life of the patient and carer.
It is difficult to realise when someone has TN and it is only when an attack occurs that any sign of the condition is visible. This may be the face contorting with pain, facial twitching and/or involuntary head jerks. Usually an attack is brought on by what is known as a trigger. For example, this could be a cold wind against the face, brushing one’s teeth or eating a meal. The patient will tend to avoid the triggers, not wishing to bring on the pain of an attack. Therefore, it is important to devise ways around these issues so that the patient can continue lead as normal a life as possible.
Signs of an Attack
You will need to be aware of the following signs that a patient may experience in an attack:
- Sudden immobility or silence
- A physical jerk
- Involuntary facial twitches
- A scream or shout of pain
TN is a little-known condition and will require explanation. It is important that, as a carer, you keep yourself up to date with the latest developments and ideas, whether it is the latest surgical techniques or simply a new recipe that doesn’t involve chewing.
Be aware that high doses of medication may make patients mentally slow, forgetful and confused. They may be exhausted and depressed.
The patient may have visited several practitioners over many years. There are several types of medication and sometimes different kinds of treatments and therapies need to be tested before the best is found for that individual. Some people may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication and suffered desperation and disillusionment. They will need additional support and help.
How you can help?
If you are looking after, or even just visiting, someone who is affected in this way, remember that your care and attention is invaluable. It is of great comfort for patients to be with a loved one who has done everything possible to understand the problem and who is patient and sympathetic. They may not be able to express their gratitude but it will be immense, you can be sure of that.
The pain may strike when talking,and so be aware that conversation may be halting or may cease altogether for a while. At times when their pain is severe, do not try to engage them in long conversations. You may only get a grunt by way of response! However, just your presence and kind words do much to alleviate their distress.
If an attack 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”, so to speak. 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 meal.
Because the 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. Patients may have trouble with word recall, they may 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 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. 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. 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. 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 you will understand what the sufferer is going through and the more you will be able to help and advise them.
The best starting point would be the book, Striking Back—The Trigeminal Neuralgia and Face Pain Handbook, written by an American neurosurgeon and a journalist and TN sufferer, which is available direct from the TNA UK at a cost of £20.50, including p&p. Striking Back is a comprehensive handbook which covers many issues such as the causes of TN, dental aspects, medications and surgeries, alternative and complementary therapies and also contains some tips on how to cope, as a patient and a carer.
In an emergency, it is sometimes possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all. Also, remind the person you are caring for to take along their current medication to all appointments, so that the doctor/consultant can check dosages.
There may be periods of complete or partial remission, possibly even for years, but there is a likelihood that TN will return. This can be quite devastating when it happens, so be prepared for such a situation.
Remember that doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure. As a knowledgeable and supportive carer, you can play a valuable part, too.
Please look after yourself
As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. So the role of a carer can be quite demanding, as well as rewarding.
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 it will affect the person who you care for. It is essential that you set aside some time for yourself – that is not a luxury!
Life as a carer of a patient with any condition can be difficult at times and it is important that you keep the friendship and company of others. You will need to make sure your family and friends are aware of the situation and ensure they are supportive. This will lighten your load. If you are feeling stressed, don’t feel guilty if you need to ask a family member or friend to look after the patient for a while to give you a break. It is vital that you maintain your independence and strength, too.