MD, as you know, is a progressive disease affecting the inner ear. It produces a triad of symptoms—vertigo, tinnitus and hearing loss. However this is only the tip of the iceberg. It is an unpredictable, fluctuating illness, with significant hidden disability. You can appear well but be unable to stand up straight, unable to hear properly and be coping with severe and uncontrollable ringing noises in your ear. You may have problems at work, financial worries and difficulties with family and friends due to your illness. There is so much to cope with and manage. It is useful to look at some of the evidence for this. The Society conducted a survey of its members in 1998. The survey was a randomised study of our membership so it includes a cross section of ages, disabilities and stages in the disease. It showed that the majority of people had multiple symptoms including the main triad, general balance problems, and fullness and discomfort in the ear. Many could not identify a main symptom. People in this group have many changing symptoms early in the illness or experience different problems more in different situations for example hearing loss when attending meetings, balance problems when trying to decorate at home, and tinnitus when getting to sleep. As well as these primary "ear related symptoms" others were common including headache, anxiety and depression.
Why does Ménière's disease affect quality of life so much? Consider the effects of vertigo alone. It is often poorly controlled; acute episodes can happen without warning; acute episodes last from minutes to several hours; the episodes often occur more than once a week and many have remissions of less than 6 months. If you add to this the effects of the other symptoms outlined above it is understandable that quality of life can be diminished. The Society has evidence that about one third of its members have changed work or retired because of their Ménière's disease. It can affect work, physical activities, communication and emotional states.
In addition to physical problems there are significant psychological consequences which also affect quality of life. The problems of an unpredictable, hidden and fluctuating illness are immense. There is the profound sense of loss and grief about all that is happening. In common with other serious chronic illnesses the losses include some or all of these:
In addition there may be:
In a similar way to bereavement you need to go through the cycle of numbness and disbelief, anger, depression acceptance and then move on to a different future.
Having considered the problems, the task of managing MD seems enormous. However, it is, in most cases, slowly progressive and the problems arrive one or two at a time over weeks, months and years. It is possible to have a management plan, and to combine the medical advice and treatment into something that works for you. No plan can last forever. The needs of each individual will change, and revision and modification over time is essential. Some people have a relatively stable disease, with long periods of remission from their attacks of vertigo, and minimal hearing loss, so their plan will last for months or years. Others, especially at the beginning of the illness, will have rapidly developing problems, and need to have a plan that is flexible and adaptable. Everyone lives with the uncertainty that the symptoms could recur and become severe. Before looking at the plan in detail it is useful to look at the basic scheme of medical management in the UK.