Neck dystonia (the medical name is cervical dystonia, or sometimes spasmodic torticollis) is uncontrollable and often painful muscle contractions in the neck which cause awkward postures and discomfort. The head generally pulls to one side, backwards or forwards. Neck dystonia is believed to be caused by incorrect messages from the brain to the muscles. It is a neurological movement disorder and should be diagnosed and treated by a neurologist specialising in movement disorders.
Symptoms of neck dystonia usually appear between the ages of 30 and 50 but sometimes affect younger or older people. Neck dystonia is the most common dystonia and affects an estimated 18,000 adults in the UK.
Treatment of neck dystonia usually involves regular injections. Sometimes drug treatments may provide benefit for some individuals. Some people find relief by applying light pressure to particular points on their neck or face. It is very much an individual experience. Click here for information on treatments
Generally, if neck dystonia starts in adulthood, it affects only one part of the body. If it spreads at all, which is unlikely, it is usually only to one other area. The progress of neck dystonia is unpredictable with symptoms varying by individual and from day to day. In some cases, it will progress gradually over a five-year period and then get no worse – in other cases, it does not progress at all.
Unfortunately there is not yet a cure for neck dystonia. However, in the vast majority of cases, dystonia does not shorten a person's life span. Most people do manage to develop successful strategies for living with neck dystonia combining treatment with pain control and sensory tricks to help with social situations. If you would like to discuss, call our helpline on 0845 458 6322.
Types of neck dystonia
Neck dystonia can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis).
People with dystonia have let us know that they have found the following sensory tricks / coping tips to be helpful. These ideas don't work for everyone as what works varies between individuals but you may choose to give them a try.
- Touching the chin, back of the head, neck. cheek or upper face gently can help with neck dystonia (torticollis)
- The touch is usually (but not always) more effective on the side of the head with the dystonia.
- Reclining or sitting with head support.
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.
Neck dystonia and pain
Some people with neck dystonia report experiencing pain while others report none.
There are a number of medications that can be helpful in managing pain. Many people also find attending pain management sessions helpful. Click here to read more about managing pain.
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.
Occupational therapists can advise on equipment which assists posture & movement such as neck supports, high-backed chairs and other seating adaptations.
Video and personal stories about neck dystonia
Please note: Every case of dystonia is individual and there are many different types of dystonia. The video and stories below are therefore only personal expereinces and should not be considered representative of dystonia in general or of any other case of dystonia.
In the video below, Ross talks about his experience of coping with neck dystonia.
Stories of people with neck dystonia
To read case studies of individuals with neck dystonia that have been featured in Dystoniamatters! click on the links below:
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.