Cervical dystonia: symptoms, causes and treatment

Dystonia is the name for uncontrolled and sometimes painful muscle movements, or spasms. The NHS explains that it can affect the whole body or just one part, and that it can start at any age. Cervical dystonia is the form that affects the neck. The word torticollis, which you may see on letters or in older books, describes the same twisted-neck posture.

In cervical dystonia, muscles in the neck tighten or contract when you do not intend them to. NHS inform describes the typical result as the head being pulled in one direction, which can then affect movement and cause pain. Shaking (tremor) is often associated with some types of dystonia. How it looks differs from person to person, and it can also vary from one day to another.

Because it affects one region of the body, specialists describe it as a focal dystonia. NHS inform notes that other focal forms affect the voice, the muscles around the eyes or a limb, as in writer's cramp.

The NHS lists uncontrolled muscle cramps and spasms, parts of the body twisting into unusual positions, such as the neck being twisted to the side, shaking, and uncontrolled blinking as symptoms of dystonia in general. In the neck, the main features are an abnormal head position and spasms that may be continuous or may come and go.

The NHS says symptoms can be triggered or made worse by things such as stress, tiredness, drinking alcohol or caffeine, talking, eating or chewing, and activities like writing or typing. Many people with dystonia also notice that symptoms vary through the day.

• The head pulled or twisted in one direction, which NHS inform describes as typical.

• Neck muscles that feel tight, with spasms that can be continuous or intermittent.

• Neck pain, which NHS inform says can result from the abnormal pull.

• Shaking (tremor), which NHS inform says is often associated with some types of dystonia.

• Symptoms that change with stress, tiredness, caffeine, alcohol or particular activities.

The NHS says dystonia is caused by a problem with the part of the brain that controls movement, and that often it is not known why this happens. This matters for how you understand the condition: it is a disorder of how movement is controlled, not of muscle weakness, and it is not caused by something you did.

In some people there is a clear explanation. The NHS lists an inherited genetic problem, a side effect of certain medicines such as antipsychotic and anti-sickness medicines, Parkinson's disease, stroke, cerebral palsy and multiple sclerosis. NHS inform draws a distinction between primary dystonia, which can be a condition in its own right and often begins in childhood, and secondary dystonia, which happens as a symptom of another problem such as brain injury or certain medicines.

If a medicine may be involved, do not stop it yourself. Tell the GP or neurologist what you take, including anything bought over the counter, so they can decide whether it is relevant.

The NHS advises seeing a GP if you think you might have dystonia, noting that it is uncommon but best checked. A GP who suspects it will refer you to a neurologist, a specialist in conditions of the brain and nerves.

According to the NHS, the neurologist may ask about your symptoms, other conditions you have and medicines you take, and whether anyone else in your family has dystonia, since it can sometimes be inherited. They may arrange blood and urine tests and a brain scan to look for other problems. NHS inform says tests may be used to confirm whether the dystonia is primary or secondary.

Diagnosis is mostly based on seeing and examining the movement. The tests are there to look for an underlying cause or for conditions that can look similar. If the diagnosis is confirmed, your neurologist can tell you which type you have and what your treatment options are.

There is no single treatment that suits everyone. NHS inform says you might need to try several options to find out which works best, and the NHS stresses that the best option depends on the type of dystonia you have.

The NHS says dystonia affects people in different ways, that the severity of symptoms can vary from one day to another, and that it can make daily activities painful and difficult. It says dystonia is usually a lifelong problem, that it may get worse for a few years and then remain steady, and that occasionally it can improve over time.

The NHS says you can get support if you live with dystonia from Dystonia UK. Your GP or neurology team can also direct you to support in your area.

The NHS says that if a GP thinks you could have dystonia they will refer you to a neurologist for tests. Botulinum toxin injections and, if other treatments do not help, deep brain stimulation are among the treatments the NHS describes.

Some people choose to see a private neurologist for an earlier assessment or a second opinion. Whichever route you take, it can help to bring a list of your medicines and any relevant family history to the appointment.