For most patients, the cause of dystonia is unknown — this is called idiopathic dystonia. Gender, age, and genetic predisposition may all play a role. For example, women are twice as likely to develop dystonia as men, and it typically appears after the age of 50, though it can start earlier or later.

Dystonia can also be secondary, meaning it’s sometimes part of another disease, such as Parkinson’s disease. Secondary dystonia can result from structural lesions (which could be anything from inflammation or neoplasms to strokes) or another type of neurodegenerative disorder. Some medications can also cause reversible dystonia.

Dystonia can affect almost any body part, but the most common form — cervical dystonia — affects the head, neck, and shoulders. The key signs of cervical dystonia include persistent spasms or cramps of the muscles in the neck, abnormal head or neck postures (where the head might tilt to one side), and tremors. This combination of symptoms is a fairly high indicator that there might be an underlying dystonia.

With dystonia, a unique feature known as a “sensory trick” may appear — this is when we see a tremor that varies in severity and amplitude depending on a certain position, for example whether you’re looking to the right or to the left. Simply touching your chin or cheek can reduce the force of the tremor.

If you’re in a lot of pain, analgesics, anti-inflammatories, or muscle relaxants can be helpful for short-term pain management. A physical therapist can help with range of motion exercises and techniques to relieve spasms. These strategies may provide some relief.

Diagnosing dystonia involves three key steps: reviewing symptoms, a clinical examination, and using imaging to rule out other causes. The symptom checklist goes through the signs and symptoms discussed above. The clinical examination is a complete neurological assessment, and this is typically where the diagnosis is made. We’re looking for tremor patterns, the direction of the head turning or tilting, the presence of neck discomfort or tension, and range of motion capability. Finally, diagnostic tests — imaging like MRIs or CT scans — are used to rule out secondary causes.

If you think you have a movement disorder — say, for example, you have neck pain or a head tremor — then it’s a good idea to bring it up with your family doctor and to ask for a referral to a neurologist. Most community neurologists can diagnose cervical dystonia, but seeing a movement disorder specialist, often found at university hospitals, can be ideal.

Your family doctor will likely have an established referral pathway to neurologists, and can make the referral for you. For patients who want to do their own research, you can visit the Canadian Movement Disorders Society website, which provides an interactive map of clinical programs and services in Canada.

Currently, the drugs authorized in Canada are only for the treatment of symptoms of cervical dystonia. These drugs may not be appropriate for everybody and may have side effects. Once cervical dystonia treatment begins, patients may experience symptom relief. Physical therapy can also help patients maintain mobility and manage symptoms.

Dystonia is a neurological disorder that can be explained most simply as involuntary muscle contractions leading to painful spasms, tremors, or abnormal postures. We don’t know exactly what causes dystonia, but it’s a type of abnormal motor pattern coming from an area in the brain called the basal ganglia. Opposing muscles contract at the same time (a phenomenon called co-contraction), rather than one relaxing, which leads to tension and spasms.