I found this somewhere and copy pasted last year, not my words and wish I could remember who wrote it! Very helpful! Mimi
Caring for someone with Trigeminal Neuralgia
This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.
It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - 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 does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.
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’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.
There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. 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 another spectrum 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. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. 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 “zapzapzap” 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. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!
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 all round really!
You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer 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 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.
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, migraines 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.
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 a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.
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 isn’t much fun! 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.
To be in the company of a fellow sufferer is 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.
The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them.
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”, 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 meals.
The sufferer 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, the disease may also have an affect on the intimate side of the relationship since the sufferer 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. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!
Because the anti-epileptic drugs 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. If the TN sufferer is on high doses of medication, their memory could be badly affected. They 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 very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. 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 at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.
In an emergency, it is 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.
The sufferer 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.
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. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure.