Mouth, tongue or jaw dystonia (the medical term is Oromandibular dystonia) is characterised by forceful contractions of the face, jaw or tongue. It can cause difficulty opening or closing the mouth, often affecting chewing and speech.
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In oromandibular dystonia the muscles that move the mouth and jaw are affected by involuntary spasm. This unwanted muscle contraction can pull the mouth and/or tongue into different positions. This often happens when people are using their mouths e.g. talking or eating, but can happen at rest as well.Like most types of dystonia it can be made worse when people are anxious or tired. It does not affect the mind or senses.
Although oromandibular dystonia most commonly develops following spread of dystonia from the neck or eyes, it can also appear in isolation. Where the condition comes on in mid-life without obvious cause, it will not usually spread further.
In some people, previous treatment with medicines that work by blocking the chemical dopamine in the brain (which can be used to treat a variety of conditions including nausea, vertigo or anxiety as well as psychiatric conditions such as schizophrenia and depression) can be the cause of oromandibular dystonia. Such people may also be affected by dystonia elsewhere in the body, and the condition typically comes on after treatment with such drugs. Another name for dystonia
caused in this way is tardive dystonia.
How can oromandibular dystonia be treated?
Unfortunately, to date no cure exists for oromandibular dystonia, although there are treatment options that can reduce the impact of the symptoms usually using tablets and/or injections.
A few different drugs can help reduce the severity of symptoms in people with oromandibular dystonia. Although some people get great benefit from such drugs, they are not effective in everyone, and some people experience side effects.
Injections can be very effective. The injection temporarily weakens the muscles and injections need to be repeated around every three months. Injections into the muscles that move the mouth can be difficult, as a very precise dose needs to be given to avoid weakening the muscle too much and some muscles can be difficult to inject. Any excessive weakness of the injected muscles is always temporary.
Because of these difficulties muscles are usually injected using electromyography (EMG) – a tool that helps identify the over-active muscles.
How do I live with dystonia oromandibular dystonia?
Oromandibular dystonia can be a challenging condition to live with. The movements around the mouth can sometimes lead to people feeling self-conscious in social situations. Sensory tricks, such as chewing gum, may help control the spasms for some.
Learning about oromandibular dystonia and talking about it with others who have the condition may help you come to terms with it and find the best way to manage your specific condition. A brief explanation of oromandibular dystonia to others may not only help them to understand your condition, but also, in turn, help you to cope with it.
Coping with dystonia can be done most successfully if the person affected by dystonia (and, where appropriate, their carers) actively manages the condition. Everyone is different and so what this means in practice will vary from person to person. To manage dystonia effectively, people affected by dystonia need information about all aspects of the condition. This can enable them to take control and become the actor of their condition. Click here to read more about managing dystonia.
Dystonia and mental health
Mental health is a sensitive topic for many people with dystonia as many cases of dystonia are initially mistaken for a mental health (or psychological) condition. In the vast majority of cases, dystonia is a neurological illness and does not have a mental health cause.
However, it is also increasingly understood, that although mental health conditions do not normally cause dystonia, there can be an important relationship in some cases between dystonia and mental health conditions such as stress, depression and anxiety.
This relationship can be two way - the symptoms of dystonia can cause anxiety or depression but also anxiety and stress can make the physical symptoms of dystonia worse. If you are affected by a mental health problem, it is important to get treatment. Click here to read more about dystonia and mental health.
Last reviewed February 2014
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.