Pain in the neck: What is cervical dystonia?

Cervical dystonia (CD) can be quite literally a pain the neck! It is a neurological condition that can cause an abnormal head position, pain and head tremor. Although CD is a physical and not a psychiatric condition, it may lead to social withdrawal and depression, as people with the condition avoid interaction with other people and struggle with self-image.

CD is the most common form of dystonia, affecting nine in every 100,000 people. It is thought to be related to a malfunction in a small but important area of the brain. The malfunction causes the brain to over-activate the neck muscles, sometimes pulling the head in different directions involuntarily. As these muscles are overactive, abnormal posture, pain, tremor and neck spasms may result. These symptoms are exaggerated by fatigue and emotional upset. Sometimes the head and shoulder movement occurs while walking or using both hands (e.g. driving a car, washing dishes).

Although quite common, CD can be misdiagnosed. There are treatments and support networks available to help people living with involuntary, repetitive and sustained movements.

An important aspect of managing CD is getting in early, as intervention can help stop it from getting worse. Therefore it is very important that symptoms are monitored very closely.

Taking a holistic approach

It is important to manage both the physical and psychological aspects of CD.

There are several treatment options available to help people with CD manage their physical pain and discomfort. Treatments for CD include botulinum toxin (BoNT – Botox, Dysport) injections, oral medications, physical therapy, selective peripheral denervation and deep brain stimulation.

It is also important to take care of our emotional and mental health, especially as CD can be a frustrating condition and can lead to social withdrawal. Stress also exacerbates symptoms, so people should not feel afraid to seek out the help of a trained psychologist and physical therapist. This is important for friends, family and carers to know, because nobody needs to suffer in silence!

Treating the physical symptoms of CD

Botulinum toxin (BoNT) is the main treatment for CD. Injections of BoNT work by relaxing the muscles. BoNT Type A, commonly known as Botox or Dysport, is the first-line treatment. It can be very effective even after the first use, and its effects can be prolonged with further use.

Everyone responds differently to BoNT A injections. For this reason, your doctor will want to monitor you throughout your therapy. When you first begin the treatment, your doctor may want to change the dose, or even the muscles injected, to get the best results. It may take several visits with your doctor for a decision to be made about any changes needed for the next cycle of BoNT A injections. For the best response with this treatment, it is important that you diligently and accurately report your symptoms to your doctor. You can ask your family and friends to help observe you so that your report is thorough.

Consultant Neurologist Dr Karl Ng from Royal North Shore Hospital said:

"Monitoring symptoms, by way of a diary, allows me to get a clear and objective way of looking at [a patient’s] treatment response, as well as side effects. It may also be of benefit to monitor the effect of stress and relaxation on their symptoms."

As for pills, low dose benzodiazepines (e.g. diazepam) can help relax muscles and reduce anxiety. Baclofen (Lioresal) can relax muscles by reducing the release of neurotransmitters that stimulate muscle activity. They are less effective and usually kept in reserve in case BoNT A is not enough to alleviate symptoms.

There is also a treatment called intrathecal baclofen (Lioresal Intrathecal) which is injected in the top of your spine. After treatment, people have reported an increased range of motion in the neck muscles, ease of care, and improved quality of life.

Side effects can occur with any medications, so for any of these treatments, as either a carer or patient, always monitor how you or the patient is feeling with each treatment. Your doctor will be able to advise if a treatment is appropriate for you.

Further forays into CD treatment

As you are beginning to notice, there are many options for managing CD. Another technique is called selective peripheral denervation. Don’t be put off by the fancy name – it’s basically a procedure to cut out the pesky, yet specific, nerves that are causing trouble. However, it’s only used after those treatments we have already mentioned, largely because it’s not as successful and there can be some nasty side effects.

But wait, there’s more. Deep brain stimulation has shown some great results for people with refractory CD.

And there is, of course, physical therapy. Therapists can teach people with CD how to perform daily tasks in a way that minimises the pain, and can help develop techniques to find the "sensory tricks" that temporarily reduce the spasms. It does work, though no one really knows how. Keep in mind that if your CD symptoms are exacerbated by physical stress, there is a chance that physiotherapy can actually make it worse.

Lastly, EMG biofeedback helps people to consciously control their muscle tension by making them aware of it. Biofeedback has been successful in helping people with CD control their muscle tensions as much as possible. Studies have shown that biofeedback can reduce pain and disability for up to nine months after it is administered.

Dr Ng said:

"Relaxation therapies such as biofeedback, behaviour therapy, meditation and hypnosis may be useful in up to 50% of patients, and may be more useful than physical therapies such as physiotherapy, acupuncture, osteopathy and chiropractic therapy."

Most people will have to use painkillers too, so be aware that taking pills may just be part of the package.

Coping emotionally

It is well recognised that perhaps the greatest challenge for people managing CD is dealing with the emotional and mental traumas, especially when it comes to overcoming the stigma associated with the physical appearance of the condition. Nobody likes to feel self-conscious, so it is important for people with CD to know that they are not alone.

Depression can be a common occurrence, and when we stress out, we make ourselves feel worse. There are support groups that are incredibly useful and can help break the cycle of feeling bad.

Treatment for the mind is just as important and varied as treatment for the body – taking care of one means taking care of the other. As we have shown, there are many therapies available to ensure your quality of life is at its best, and your doctor, psychologist and physical therapist are committed to making sure you are coping with this condition.

More information

For more information, see Cervical Dystonia.

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