Comments from Carers
Many of our members find that having a close family member or friend to give them support makes all the difference to their quality of life. However, this role can be demanding and give rise to deep emotions. It is so true that TN can affect whole families, not just the person who is diagnosed with it.
Please also spare a thought for those of our members who feel isolated and who are in effect their own carer, as well as the patient. TNA UK is always there for all of our members and the superb volunteers on our telephone and email helplines have helped countless members through bad times. Therefore, please make sure that you use these facilities whenever you need some understanding and support – do not ever feel that you have to cope alone.
Here are some recent comments from members and their carers about supporting someone with TN – perhaps you share some of their feelings
“My wife, C, has suffered from TN for the past 10 years and, although she has had periods of remission, the condition seems to have become more persistent during the past year or so, in spite of now being on the maximum dose of Lyrica. As her husband and carer I know very well how brave C is in getting on with life in spite of TN and I also know all too well how helpless it leaves me feeling when she is in such pain sometimes, and all you can do is wait for the tramadol to take effect (which is not always the case). C has recently had an MVD operation and so far all has gone very well”.
“J’s TN came on relatively slowly with some instances of what we thought may have been intermittent tooth pain back in the autumn of 2009. Her dentist thought there was no dental problem involved but the pain still made itself felt on occasion.
J finally got a diagnosis of TN early in the New Year which meant that drugs were prescribed and taken at an early stage. This did not prevent the problem but at least it reduced the anxiety. The first drugs J tried were carbamazapine and gabapentin. The combination of these really knocked J for six to begin with and even more so when a particularly bad episode left her unable to speak and motionless.
I think this was the wake up call to me. Up to that point the pain elements of the condition had not really impacted on how we lived, although for J the anxiety of anticipating the pain was beginning to tell and, up until the diagnosis, the uncertainty of the condition she was enduring was causing tension that exacerbated her fibromyalgia. Certainly for me it was the point where I realized that I should be more empathetic to J’s conditions, feelings and general well- being.
J is a very resourceful lady with a tenacious character that means she will thoroughly research things independently. Sadly, as in so many cases, doctors have fallen short of expectation and J’s research meant that she knew a lot of the treatment options before she discussed them with a professional. I took a back seat, trying to be supportive where I could and accompanying her to all the consultations that work would allow.
In retrospect, I regret not being more understanding of J’s mental and physical condition through this period. As I became more aware of the TN condition, and we were in the process of trying to decide on surgery for the MVD, my detached and unemotional decision processes did not chime with J’s response – I had to compartmentalise her health in my head so I could function at work. However, when her anxiety heightened as we approached the possible surgery date, it was plain that I had not provided the level of support I should have.
This led to us seeking advice from a second consultant and I remember watching J’s shoulders lift with relief when she was advised not to have the surgery at this stage and that she could try a different medication. From then on, I have been more alive to J’s feelings, although she has had no TN related pain for some time and has managed to reduce her medication to a small dose.
I need to be mindful of what is causing J’s mood changes or exhaustion from day to day. Not being able to visualise TN is difficult if you have no real experience of the pain yourself. However, when your loved one is in pain of such a magnitude, watching and knowing that you can do nothing immediately to help is mentally paralysing. Trying to comfort someone when you have no real idea of what the pain is like is hugely difficult and makes me feel inadequate and helpless”.
“Caring for a loved one with TN is a difficult task because there is very little one can do to ease the terrible pain during a spasm. The main thing is to be there, perhaps give a warm pad (a wheat bag) to comfort and try to keep calm. D never wants to be touched during an attack.
In between episodes, I try to make home life a comfort zone – a relaxing environment is the only other thing I can recommend, as any stress or worry seems to affect him much more now he has TN”.
D adds-
“During the very difficult times, the presence of a caring, loving wife means more to me than I can ever express in words”
“When my mother, who had always been so healthy and active, was diagnosed with TN, our lives as a family changed. My brother and I (who were both in our early 20s) lived away from her and she lived alone.
In the first year we both witnessed Mum having the most awful pains imaginable, which made us feel stressed and somewhat helpless. She was given carbamazepine and gabapentin, plus various painkillers and other drugs, with little effect. Then, after her worst ever, terrible attack lasting a few hours on a plane, when fortunately I was with her, she was taken to a neurological unit in London and prescribed phenytoin. From that day, Mum’s personality changed. The day after she was given the loading dose, she was so confused that she discharged herself from hospital and went missing for several hours. Eventually I received a very strange, muddled text from her and from that we were able to locate her.
Mum has been taken to A&E, and sometimes admitted to hospital, on several occasions, e.g. when having a sudden severe attack in a pharmacy or the supermarket, and it is always very worrying for my brother or me to receive a phone call to that effect. She has been tried on many other medications, in various combinations, but nothing has been as effective for her as phenytoin.
In the last couple of years, luckily, Mum’s TN episodes have diminished in frequency and severity so she is currently only on a low maintenance dose and overall is leading a very busy and happy life as a retired person. I would say that it has definitely helped us all to cope by learning as much as possible about TN, as Mum has changed so much but we feel we can understand why.
Mum has become less confident because she always fears the next severe pain and takes many precautions daily to avoid any possible triggers so she can never forget for a moment that she has the condition. We are glad that she does her best to be positive and enjoy each day that she can function well. She counteracts her situation as much as possible by deliberately being outgoing, socialising and undertaking a lot of voluntary work, although she gets very low indeed when she is prevented by TN from doing these things for a while and at these times we are very concerned for her mental stability and strength.
It’s been difficult for us to make adjustments in our lives since Mum’s diagnosis but I think we have now all accepted the new situation as best as we possibly can. I know how grateful Mum is to TNA UK for the help she has received from them, especially from someone on a helpline who she says “got her through” a particularly black time when she didn’t feel able to share her feelings with my brother and me”.
The mother says,
“My daughter and son have been absolutely wonderful and I cannot thank them enough. I am very aware that I am more needy these days and I feel very guilty about it but I’m afraid I just cannot cope with all this alone. I am absolutely determined not let TN blight my life more than it has to, for my own sake and, as I don’t like to be an extra burden when my children are young people trying hard to make their way in life and dealing with their own work, studies and relationships. Keeping busy and consciously adopting a positive attitude every day seems to have helped me. Also, pursuing a couple of deep interests provides me with real relaxation and escapism”.
“It is hard to imagine the pain suffered by a partner during TN attacks. They can be rendered helpless by the pain and you as carer are helpless to do anything about it.
However, all is not lost. The correct drug therapy can alleviate the pain and frequency of attacks. The onset of TN is a life changing experience for both the sufferer and family..But adjust, love and you will be ok”.
His wife adds,
“Having a supportive carer makes a huge difference to my ability to cope with attacks. Although my husband says he feels helpless because he cannot do anything about the pain itself, his support is invaluable. In practical terms, he has driven me to appointments, spoken to doctors and consultants when I am struggling to utter more than a few words and kept everything running smoothly at home so that I do not feel guilty about the impact on my children. Emotionally, just by recognising the nature of the condition and patiently sticking by me, he gives me the strength to endure the attack and remain positive that it will pass in time”.
Carer’s stories
Below are the personal accounts of carers of TN sufferers. Their shared experiences give an insight into the challenges they face caring for a loved one suffering from this condition and the various coping methods they employ to manage and maintain a near normal family life.
Member’s wife Caroline talks about caring for someone with TN …
Living with someone with TN can be very hard. My husband John developed the condition about 10 years ago. Fortunately he was diagnosed quickly so we knew what we were dealing with. Well, we thought we did, but nothing can prepare you for this type of condition. It’s so frustrating not being in control of the pain. The drugs help dampen down the pains but unfortunately for John, nothing takes it away completely – if only I could do something to help alleviate the pains. John could take larger doses of oxcarbazepine but he doesn’t want to be a zombie and, in between pains, wants to be able to function normally. The only thing I can do is to be patient and keep everything I’m in control of in shipshape order, ie, the house, children, cooking, etc, so there is as little stress as possible for him as stress definitely exasperates the pains.
When my husband was first diagnosed I contacted the TNA and I’m so pleased I did. They certainly helped me to understand the condition and gave me the support I needed. I wanted to learn as much about the condition as possible. Talking to someone who knew what the pains were like certainly helped me. Plus, I got involved with helping the charity which was a comfort too. However, my husband didn’t want to talk to anyone about his pains. In fact, just seeing the TNA newsletter makes him feel uneasy.
Being there to support John I know also helps and it’s a comfort to him to know he has someone there who cares and tries to understand, plus the reassurance from me that episodes of pain will subside. However, this bout of pains has not completely gone away for over a year now, which has been hard on all of us.
John is a very calm person and rarely gets cross or raises his voice. TN pushes him to being desperate at times and less tolerant of life’s challenges. He is scared it will never go away. It’s like watching your loved one being tortured. I’m sure I would be awful to live with if I had to endure this illness. I wish we could share the pains, as I can see them wear John down and I believe they have aged him. He copes fantastically and does try to be happy and normal in between pains and even during them when the pains allow. But the family often see him sitting quietly, bent over holding his head, and this is hard, especially for the children.
It’s a real shame that we miss out on some social events, as it is hard for John to concentrate and be social while he has the pains. Another hard fact about the condition is that no one really understands; many people refer to it as ‘headache pain’, but it is nothing like that. John said it would be easier if he’d broken a leg as people could see what was wrong with him. It’s a cruel condition. He does sometimes talk of ending his life when the pains are at their worst, sometimes he suffers for 20 minutes at a time. No wonder they call it the ‘suicide disease’. However, when he is free of pain he knows what life is like without the pain and hopefully this will keep him going.
It’s also hard for people to understand the longevity of the condition. People think it can be cured and for some people it can be. John had an MVD (a Microvascular Decompression) nine years ago but, in his case, where the blood vessel interferes with the nerve is too near the brain, so the operation was not successful. It was very disappointing. John doesn’t want to try any other surgery as he is worried another procedure may make it worse, and that would be impossible to deal with. We just pray this episode will leave him soon and he can start enjoying life fully again.
Another thing which makes it particularly difficult in being the carer of someone with TN is that you, as the carer, can’t really complain about any ailments you yourself may have, since nothing you are experiencing will be anywhere near the level of pain that TN causes. If you can imagine having a tooth drilled and the dentist hitting the nerve (which hardly ever happens these days with anaesthetic injections) – I have had that pain but only very briefly thank goodness … well, TN sufferers have that level of pain for long periods of time, in John’s case for anything up to 20 minutes, so how can there be any comparison?
Being the carer of someone with TN means it is particularly difficult to complain about any ailments you yourself may have, since nothing you are experiencing will be anywhere near the level of pain caused by TN. Imagine having a tooth drilled and the dentist hitting the nerve (which hardly ever happens these days with anaesthetic injections)! I have had that pain but only very briefly, thank goodness, but for TN sufferers that is the level and intensity of the pain and it can last for long periods of time – in John’s case for anything up to 20 minutes at a time.
Good luck to you – whether you are a sufferer or a carer, I would highly recommend you seek the support of TNA UK, who work hard to give guidance, information, someone to talk to, plus raise awareness of the condition amongst the medical profession, so that quicker diagnoses are made and more money is given to research for more cure options. I can’t thank the TNA enough for all their help and support they have given me and continue to give me.
