Learning to Live with Meniere’s Disease

Meniere’s disease is a disorder of the inner ear that causes extreme dizziness, ringing in the ears (tinnitus), a full feeling in the ear, and intermittent hearing loss. It is reported to affect 0.2% of the population, and can begin at any age. There is no cure. Living with Meniere’s can have a huge impact on an individual’s quality of life, affect their ability to work, and affect family relationships.

Not only is there no cure, but there is no definite consensus on what causes it. The attacks of vertigo seem to appear without pattern. When a vertigo episode strikes, it can last any where from ten minutes to eight hours. The best way to explain the feelings of vertigo experienced by a Meniere’s patient is to imagine yourself sitting in a chair and being spun around and around for five minutes or so, and then immediately standing and trying to walk. This is what the Meniere’s patient experiences, but unlike the chair spinning experience, it does not resolve quickly. Some Meniere’s patients also experience what is called “drop attacks”, when the attack is so violent that it is difficult to stand, and the person can actually fall to the floor.

Because Meniere’s episodes are so unpredictable, holding down a job can be difficult. Many Meniere’s patients are unable to work because of the debilitation of this disease. Meniere’s is a listed disability with the Social Security Administration, along with other balance disorders. Total disability, however, would depend on your doctor’s specific findings.

Karen developed Meniere’s disease in her thirties. Her first symptom was a slight hearing loss in one ear. At that time, she had no dizziness or tinnitus, but she did have a full feeling in the ear. Within a year, she was having full-blown Meniere’s attacks. She had the choice of quitting her job to stay at home, which she chose to do. On the days she felt well, she was productive, doing shopping, cooking, etc. However, on her bad days, she was almost bed bound, or at least chair bound. She experienced nausea from the vertigo. After an attack, she found herself too exhausted to do anything but rest and recuperate.

Karen was lucky to have a supportive spouse. He was happy to take over her responsibilities on her “bad days”. However, some people are not so lucky. Many patients find themselves being thought of as a “whiner” or “hypochondriac”. Meniere’s is very difficult to understand unless you have experienced it.

Medications do exist that help with the symptoms, such as diuretics, anti-nausea medications, and mild tranquilizers. Some patients resort to surgical options. Some have also had good response from a device known as a Mienette. The individual’s doctor can best advise what treatment options he thinks would be helpful.

If you or a loved one has Meniere’s, know that you are not alone. There are online support boards where patients can share experiences, ask questions, or just vent. Just knowing others also deal with the same challenges can be comforting.

Meniere’s usually is confined to one side, although it can be bilateral. Many people report the symptoms in one ear that eventually also involve the other ear. Whether unilateral or bilateral, the treatment options are the same. If hearing loss is severe, hearing aids may be fitted. However, hearing loss can be intermittent, and the quality of hearing changing from day to day.

If you have Meniere’s, seek support from family, friends, your physician, and online friends. It can also help to journal your experiences to relieve some of the stress of dealing with a disability. If you are employed, speak honestly with your employer and see what leave time can be arranged. If you are unable to work for an extended period, look into long-term disability plans where you work, or with the Social Security Administration.

Keep informed. New studies are always taking place to diagnose and treat Meniere’s. Keeping up to date will help you be able to discuss future treatment options with your doctor.

Work hard at finding joy in the times you are feeling well. Most Meniere’s patients say that they relish their life on the good days, because they never know how they will feel tomorrow. Let your family know how much you appreciate them. Even though there is no cure now for Meniere’s, it is important not to get discouraged. With the current studies being conducted, a new treatment may be just over the horizon.

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