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The Consumer Handbook on Tinnitus

Chapter Four summarizes reactions that people experience when they have tinnitus. Consideration of these reactions is crucial to its management; a patient may not be able to control the tinnitus sound, however they can strive to control more effectively their reaction to the sound. Although there is no single "profile" for the tinnitus sufferer, many share similar complaints and many endure a variety of additional physical and emotional disorders that exacerbate their tinnitus. Severe tinnitus can provoke feelings of depression, anxiety and anger, and can interfere with essential activities such as sleeping, concentrating, communicating and working. If a patient can use their understanding of tinnitus to manage the way that they think about the experience, then perhaps their knowledge can mitigate the disturbing emotions resulting from the perception.
Tinnitus imposes a sense of loss; for some patients it is the profound loss experienced when something valuable, once taken for granted, is taken away. When asked about the bothersome nature of tinnitus, many patients express sadness, frustration and anger that their enjoyment of silence, of peace and quiet, cannot be recovered. The thought of losing silence, or the ability to enjoy silence, may seem abstract to people who don't experience tinnitus. However, such a loss is tangible to an individual who fears they may have to change their lifestyle to accommodate the belligerent and unwanted intruder in their ears and in their head. Patients often tell us that these emotional responses are more disturbing than the tinnitus sound on its own.
It is this unique ability to interact with thoughts and emotions that makes tinnitus a particularly disturbing experience. While predicting who will be bothered by tinnitus may be a challenge, it is usually easy to tell when someone is suffering. Tinnitus creates in many patients the sense that they cannot control the sound, or that they are losing control of their senses. Patients may attribute to their tinnitus a variety of potentially threatening health and hearing problems. The constancy of tinnitus may contribute to a patient's belief that it generates an unavoidable cycle of distress. Patients' self-assessments of tinnitus handicap reveal that tinnitus consistently affects sleep, emotional state, concentration, hearing and communication.
Clinicians try to learn about their patients' tinnitus by establishing the ways in which the sensation affects the patient's emotions, beliefs, and lifestyle. Some clinicians may try to quantify the tinnitus sound itself; however it is more important to identify patients at risk for developing emotional responses to tinnitus that exacerbate the problem. A variety of patient intake forms can identify tinnitus-related difficulties as they guide the development of a management strategy. Each person's tinnitus experience has unique qualities based upon their particular auditory and psychological state, as well as their particular lifestyles.
Figure 1-1 (next page) contains results drawn from patient reports in several studies and databases showing that the perceived characteristics of tinnitus, its pitch, loudness and quality, result in complaints that can be categorized into functional areas such as sleep problems, communication/hearing difficulties, emotional distress, or impairments related to concentration. These handicaps often influence relationships with friends and family, work and recreational activities. Each person's reaction to tinnitus is unique to their particular perception of the sound, and its influence on various life activities. Patients also express concern and fear that the tinnitus sensation will get worse as time goes on. This is usually not the case. But the first few months following tinnitus onset are often full of many fears.

Chapter Five discusses how clinicians strive to separate the tinnitus sound from the reactions to the tinnitus, as well as from other problems related to hearing. When tinnitus co-exists with psychological problems, the attempt of a clinician to help the patient "divide and conquer" tinnitus from other problems may be helpful, but more difficult to accomplish than when the tinnitus disruption is limited to communication problems. Patients suffering from tinnitus may not attribute immediately their difficulties and distress to a treatable psychological disorder and the clinician may enable a more positive outcome by making an appropriate referral in such cases. Psychological disorders such as depression, suicide ideation, anxiety disorders, and posttraumatic stress disorder are present in more than half of tinnitus patients (Erlandsson, 2000). Patients who experience severe psychological distress related to their tinnitus require services from appropriately trained professionals with expertise in treating such disorders.
One major objective of this book is to demystify the tinnitus experience for patients who seek help from its annoyance. Many people find that learning about a disturbing symptom, such as tinnitus, fosters a sense of control over the condition's effects. Tinnitus in most cases is not an indication of serious disease or impending deafness. Indeed, the degree to which a person's life is disrupted by tinnitus determines most consistently the condition's severity. A subjectively loud tinnitus sound that does not interrupt sleep or concentration will be considered by the patient less severe, and will be dealt with more effectively than a softer sound upon which the patient blames functional handicaps. The need for help is subjective, and a patient who believes help is needed should seek advice and assistance to learn and implement coping strategies. Help with tinnitus can take many forms, and although the effectiveness of intervention is difficult to predict, there are many aspects of tinnitus distress that can be reduced when the tinnitus causes and effects are more thoroughly understood.
Remember, many individuals with tinnitus misinterpret it as they believe that the sound they hear cannot be stopped, will always bother them, and may even make them deaf. When it is labeled or evaluated as such by a patient, tinnitus has the potential to be more handicapping than it would be for a patient who recognizes that it can be annoying from time to time, but that its presence is not a symptom of a more serious disease. One of the more difficult aspects of tinnitus management relates to the observation that two patients hearing a similar tinnitus sound may respond to it in completely different ways, with different degrees of desperation. For patients to begin the process of learning to cope with tinnitus they must be educated regarding what the tinnitus is, and how it will typically behave under the circumstances in which the patients finds themselves. A priority of this book is to provide that information, and Chapter Five reviews strategies that people can employ to change the reactions they have to their tinnitus.

Chapter Six puts tinnitus in the context of your family and your life. Factors associated with the degree of tinnitus annoyance often relate to stressors with which patients live as they navigate workplace and relationship demands. Additionally, tinnitus severity may be influenced by the patient's surroundings, and the presence of background or environmental sound. Quiet or solitary lifestyles may contribute to tinnitus annoyance when one considers the potential of background sounds to serve as a distraction or masker of the tinnitus sound. Almost 75% of patients report that their tinnitus is more noticeable when they're in quiet places and it's even more common for patients to report that their tinnitus makes it difficult to relax. Problems relaxing and maintaining an active lifestyle may inflate the importance of tinnitus to the patient, thereby increasing the priority a patient places on the sensation.
Tinnitus may affect people throughout the day in a variety of environments and circumstances. Take as an example the individual who awakens in a quiet setting and hears bothersome tinnitus. As the day progresses, this person encounters difficulty communicating at home and at work, and upon returning home is once again in a quiet environment. They may not be able to count on a good night's sleep either, thereby perpetuating the cycle of disruption, stress, and fatigue. Tinnitus affects millions of people at their core in this way, where they sleep, where they work and when they try to relax.
Your family and friends often will be reminded that the tinnitus problem is theirs as well. The person with tinnitus may come to rely upon others for support and help that is related to the problems they experience sleeping, concentrating, communicating, and controlling their emotions when trying to cope with tinnitus. For patients to benefit from the support of others, they must be able to explain clearly the ways in which tinnitus affects them and influences their daily routines. Education and practical information provided in this book regarding the mechanisms by which tinnitus is produced and perpetuated will also help others identify with the problems you experience.
Remember that family and friends who provide emotional support to patients challenged by tinnitus can feel more confident and comfortable in their supporting roles as they increase their knowledge of the problem. Their understanding is particularly important because the medical community, in many cases, has little to offer beyond what a well-informed support group provides. Support of family and friends can counteract the discouragement that many patients experience when they learn that there is no simple cure for tinnitus. Unfortunately, primary care physicians and specialists typically cannot treat tinnitus using traditional medical means, often passing the patient along to other professionals. As a result, patients may experience feelings of confusion and frustration as they believe practitioners do not understand or care about their tinnitus problem. These negative reactions can be eased somewhat by a support group that does not question the patient's suffering simply because the patient's tinnitus is neither heard by others, nor can be validated by standard clinical tests.
A few basic aspects of tinnitus should be prioritized when relating the effects of tinnitus to other individuals. One important point is that most people who do not have bothersome tinnitus hear a tinnitus sound from time to time. These sounds are often described as high-pitched tones in one or both ears that seem to appear out of nowhere, last 30-45 seconds or so, and then disappear. It might be helpful to you if your friends and family could imagine such a sound continuing indefinitely, thereby resembling your experience. When we counsel family members we often point out that the patient's tinnitus is similar to the mysterious transient sounds that most of us hear with some regularity. The fact that such sounds are persistent for the patient can be understood more easily when other people are compelled to use their own experience to imagine the potential problems the tinnitus produces. Additionally, the need for some patients to have time alone with a hobby, or some activity that they know will reduce tinnitus awareness, must be respected and accommodated even if it takes the patient away from the family on occasion. Perhaps the patient's supporters can participate in such activities, but when sharing the time is not an option the patient's needs should be respected.