Dystonia - Treating dystonia

There are a number of treatment techniques that can help control the involuntary movements and spasms of dystonia, including physical therapy, medication, and in some cases, surgery.

The aim is to provide relief from the abnormal movements and postures of dystonia, plus any associated pain and discomfort.

In some cases, other conditions that arise due to dystonia, such as depression, may also need to be treated.

Treatment for dystonia should be based on the individual and their specific needs. As different people respond differently to different treatments, it may be necessary to try several options to find out which one works best.

There are four main types of treatment for dystonia. They are:

botulinum toxin
medication
physiotherapy
surgery, including deep brain stimulation (DBS)

Wherever possible, physiotherapy, medication or botulinum medication will be used to treat dystonia rather than surgery, particularly in the case of children and young people.

Each type of treatment is discussed in more detail below. You can also see a summary of the pros and cons of these treatments, which allows you to easily compare your options.

Botulinum toxin

Since being introduced into clinical practice in the late 1980s, botulinum toxin has become an effective and widely used form of treatment for a number of different neurological conditions that involve abnormal muscle contractions, such as dystonia.

It's given by injection directly into the affected muscles and works by blocking the neurotransmitters responsible for muscle spasms reaching the affected muscles.

The effects of the injection usually last three months, after which time you'll need another injection. The site of the injection may feel painful for a few days, but this should soon pass.

Other side effects of botulinum toxin will depend on which part of your body is injected. For example, injections:

in the neck area may cause swallowing difficulties (dysphagia)
around the eyes may lead to drooping of the eyes and double vision
in the vocal cord may cause your voice to become soft and ‘breathy’

These types of side effects should pass after about a week.

Medication

There are a number of different medications that can be used to treat dystonia.

Anticholinergics

Anticholinergics are a type of medication that can be used to effectively treat all types of dystonia.

However, they're mainly used to treat generalised dystonia because botulinum toxin now tends to be used to treat focal dystonia and segmental dystonia (see below).

Anticholinergics work by blocking the release of a neurotransmitter called acetylcholine, known to cause muscle spasms in some cases of dystonia. Trihexyphenidyl and procyclidine are two examples of anticholinergics.

Side effects of anticholinergics include:

dry mouth
constipation
difficulties urinating
blurred vision
memory problems
confusion

Baclofen

Baclofen is a medication that's sometimes used to treat spasticity (excessive muscular tension) caused by stroke or multiple sclerosis. However, it’s also helps in treating people with dystonia.

In particular, daily doses of baclofen are effective in treating people with segmental and generalised dystonia as well as those with oromandibular dystonia.

Common side effects of Baclofen include:

kidney problems - seek medical advice if you develop symptoms such as sleepiness or lethargy (lack of energy)
nausea - this may be reduced by taking Baclofen with food or milk
drowsinesss
balance and co-ordinaton problems
confusion

Muscle relaxants

Muscle relaxants are sometimes used to treat cases of dystonia that fail to respond to other types of medication. They work by increasing the levels of a neurotransmitter called gamma-aminobutyric acid (GABA), which helps relax affected muscles.

Diazepam, lorazepam and clonazepam are all types of muscle relaxants which may be used to treat dystonia.

Depending on the pattern of your symptoms, muscle relaxants can be given by injection (intravenously) or in tablet form (orally). Side effects of muscle relaxants include:

drowsiness
tiredness
muscle weakness
dizziness
impaired co-ordination

These side effects should be temporary and disappear once your body gets used to the medication. If you have symptoms of dizziness, avoid driving and operating heavy machinery.

Don't suddenly stop taking muscle relaxants. If you do, you'll experience withdrawal symptoms such as anxiety, sweating or tremors (shaking).

If your care team decides you should stop taking muscle relaxants, your dose will gradually be reduced.

Physiotherapy

Physiotherapy uses specific exercises to help you maintain a full range of motion, improve your posture and prevent the shortening or weakening of affected muscles.

However, there's not much in the way of good quality evidence to show physiotherapy is effective for dystonia.

Some people with dystonia find their symptoms improve by simply touching the affected body part or a nearby area. This is known as a 'sensory trick' or 'geste antagoniste'.

For example, people with cervical dystonia (where the neck muscles spasm and tighten) often find their symptoms improve by touching the back of their head or the side of their face.

Surgery

Surgery may be recommended if your dystonia symptoms don't respond to botulinum toxin, medication or physiotherapy.

Deep brain stimulation (DBS)

Deep brain stimulation (DBS) is a type of brain surgery used to treat dystonia. During surgery, two small holes will be drilled into your skull.

The surgeon will pass electrodes through each hole and position them in a part of the basal ganglia called the globus pallidus. The basal ganglia is part of the brain that affects muscle movement.

The electrodes will be connected to a small pulse generator that's similar to a pacemaker. It will be implanted under your skin, usually on your chest or lower abdomen.

The pulse generator sends signals to the globus pallidus. This alters nerve impulses produced by the basal ganglia and improves the symptoms of dystonia.

The most common complication of DBS is that either the pulse generator stops working or the electrodes become displaced, which may require further surgery to correct.

DBS is a relatively new technique so there's little information regarding its long-term safety or effectiveness. Therefore, before deciding to have DBS you should discuss the risks and benefits of the treatment with your surgical team.

If you have DBS, you're likely to need a series of follow-up appointments. This is because in most cases the signals produced by the pulse generator need to be adjusted to ensure that your symptoms are being properly controlled.

It may be several weeks or months before you begin to feel the benefit of DBS. The benefit should continue to increase for a few years following surgery.

Selective peripheral denervation

Selective peripheral denervation is a type of surgery used to treat cervical dystonia. However, these days it only tends to be used in a few, select cases.

During the procedure, the surgeon will make an incision in your neck before cutting some of the nerve endings connected to muscles prone to spams.

The surgery will be carried out under general anaesthetic, which means you'll be unconscious throughout the procedure and unable to feel pain or discomfort.

After the procedure, you'll lose some feeling in your neck because the nerves have been disconnected.

Selective peripheral denervation is generally a safe type of surgery and complications are rare. However, possible complications include:

infection in the neck
short-term swelling of the neck
a feeling of pins and needles in the neck
occasional short episodes of neck pain