Cervical dystonia Information for patients - Sheffield Teaching Hospital

Cervical dystonia
            Information for patients

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What is cervical dystonia (CD)?
Cervical dystonia, also called spasmodic torticollis, is a painful condition
in which your neck muscles tighten or spasm making the head turn or
twist, pull in one direction or shake (tremor). It can also cause the head
to tilt forward or backward. In some cases there may also be shaking or
tremor of the hands.
Cervical dystonia is the most common form of dystonia and affects
approx 18,000 people in the UK. It is a rare disorder that can occur at
any age but predominantly arises in middle age. Symptoms begin
gradually and then reach a point where they settle down. CD can be
unpredictable and symptoms vary from person to person, day to day.
Stress and anxiety can make the symptoms of CD temporarily worse.
A small percentage of individuals find that symptoms suddenly stop –
this if often temporary and symptoms later recur within months or
years.
The most common posture is twisting of the chin towards the shoulder,
causing the head to rotate sideways – torticollis. CD is complex and
often combines several angles of the head.

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Torticollis                             Laterocollis

            Retrocollis                              Antecollis

What causes cervical dystonia?
In most cases the cause of CD is unknown although there is
sometimes family history of the disease suggesting a genetic link. This
occurs in around 10-25% of cases. There is currently no gene test
recommended for clinical purposes in people with CD.
Secondary causes of CD include certain drugs such as anti-psychotics
and some anti-nausea medications. CD has also been linked to head,
neck and shoulder injuries.

How is cervical dystonia diagnosed?
Diagnosis of CD is based on clinical examination, detailed patient history
and knowledge of the disorder. There are no specific laboratories or
imaging tests to confirm a diagnosis of CD.

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How is cervical dystonia treated?
There is currently no medication to prevent dystonia or slow its
progression but there are treatment options to ease the symptoms.
Most therapies are intended to relieve spasms, pain and disturbed
posture or function associated with CD. As CD affects individuals in
different ways, treatment plans are specific for each patient.

Medication
Drugs can be effective for some dystonia's though the response varies
from person to person and even changes for the same person over
time. Some work on interfering with neurotransmitters, the chemical
substances which carry messages within the brain. Others are designed
to relax the muscles, reduce shaking and control muscle spasms. To be
effective, they have to be taken continuously. Drugs can have side
effects and the benefits must be weighed with the potential side effects
of each drug. In adults the side effects of these drugs often occur before
an effective dose can be reached.

Botulinum toxin
Botulinum toxin injections are generally the most effective treatment for
CD and is the recommended treatment. Botulinum toxin injections
temporarily weaken muscles to provide relief from contractions/spasms
by preventing the nerve from releasing a chemical messenger called
acetylcholine. These injections are usually administered every three
months and are often given in nurse-led clinics or with a doctor when
using electromyography guidance (EMG). The injections need to be
repeated roughly every 3 months as botulinum toxin will wear off over
a period of time.

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Surgery
Deep brain stimulation is the main type of surgery for dystonia. It
involves placing a small device, similar to a pace maker under the skin
of the chest or abdomen. The device sends electrical signals along wires
into the part of the brain which controls movement.
An alternative form of surgery is denervation – this refers to selective
cutting of nerves supplying the overactive muscles causing permanent
paralysis. It is a highly specialised procedure.

What other support is available?
Physiotherapy can be helpful but needs to be provided by a specialist
physiotherapist who understands dystonia. Inappropriate exercise can
worsen symptoms.
Other types of support may be useful such as pain management support
and psychological support.
Many patients find relaxation or mindfulness techniques helpful,
particularly in dealing with the stress and anxiety that may go hand in
hand with dystonia. Adapting lifestyle to accommodate dystonia can
help – pacing activity to prevent over tiredness etc.

Living with dystonia
As with any long-term medical condition, some people with dystonia
may go through an initial period of depression, embarrassment or
frustration. Most people do manage to develop effective coping
strategies. Understanding and learning about the condition can help in
accepting the changes dystonia may bring. Taking positive steps to
manage dystonia can help to alleviate some of the anxiety that can
occur.

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In the majority of cases, dystonia does not have a mental health cause,
though there can be an important inter-relationship between dystonia
and mental health conditions such as anxiety, stress and depression.
This relationship can be two-way – dystonia can cause anxiety and
depression but stress and anxiety can make the symptoms of dystonia
worse.

Where can I find more information about dystonia?
Dystonia UK has useful information about all aspects of dystonia
  • www.dystonia.org.uk
Other sources of information include:
The Mayo Clinic
  • www.mayoclinic.org/disease-conditions/dytonia/symptoms-causes
Ipsen dystonia
  • www.ipsen.com
NHS 111
  • www.nhs.uk/conditions/dystonia

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PD10893-PIL4674 v1                                                         Issue Date: January 2021. Review Date: January 2024