What is dystonia?


Dystonia is a neurological movement disorder that causes muscles to contract or spasm involuntarily. These contractions can result in twisting movements, abnormal postures, tremors, or repetitive movements. It may affect a single part of the body (focal dystonia), multiple connected areas (segmental), or the whole body (generalised dystonia).

Each person’s experience of dystonia is unique. Symptoms can vary in severity, change over time, and be influenced by factors such as stress, fatigue, or activity. Some people describe tightness or clumsiness; others experience significant pain or discomfort. In some cases, certain sensory actions (like humming or touching the face) can temporarily ease symptoms.


Common presentations

Dystonia can affect various areas of the body and is often misunderstood. Common types include:

  • Cervical dystonia – neck pulling or twisting, sometimes with tremor or shoulder elevation
  • Focal hand or task-specific dystonia – loss of control or cramping when writing or playing music
  • Blepharospasm – eyelid spasms that can interfere with vision
  • Spasmodic dysphonia – irregular or strained voice due to vocal cord involvement
  • Oromandibular dystonia – jaw clenching, difficulty opening the mouth, speaking, or eating
  • Generalised dystonia – inherited forms that affect the limbs and trunk, often beginning in childhood


What causes dystonia?

Dystonia is believed to be caused by dysfunction in the basal ganglia – the part of the brain responsible for coordinating movement. It may be:

  • Genetic or inherited
  • Triggered by injury, trauma, or certain medications
  • Associated with other neurological or metabolic conditions
  • Idiopathic, meaning no clear cause is identified

A specific form called dopa-responsive dystonia typically responds well to medication such as levodopa and may show diurnal variation (improving after rest).


Diagnosis

Diagnosing dystonia involves a careful clinical history and neurological examination. Additional tools may include brain imaging (such as MRI), electromyography (EMG), genetic testing, or a trial of botulinum toxin to confirm involved muscles. Because dystonia can present in varied ways, diagnosis is best made by Neurologists experienced in movement disorders.

 

Need support

If you’ve been diagnosed with focal idiopathic dystonia (cervical or focal hand dystonia) from a neurologist, you may be eligible for support through our national network. 

Additional resources