There are a range of treatments that may help to control the symptoms of dystonia, including medication, physical therapy and, as a last resort, surgery.
Treatment for dystonia is based on what works best for the individual. As different people respond differently to various treatments, it may be necessary to try several options to find out which one works best.
Where possible, medication or physical therapy will be used to treat dystonia rather than surgery, particularly in the case of children and young people.
Medication
Levodopa
A medication called levodopa is the treatment of choice for people with dopa-responsive dystonia. It works by increasing the levels of a neurotransmitter in the brain called dopamine (a chemical which can affect voluntary movement). This should help to control the dystonia symptoms.
Nausea is the most common side effect of levodopa. However, this side effect should improve as your body starts to get used to the medication. Less common but potentially more troublesome side effects of levodopa include:
- feeling dizzy when you stand up
- lack of appetite
- changes in mental state, such as feeling anxious, confused or disorientated (lost), and experiencing hallucinations
- a compulsive need to gamble
- vomiting
- diarrhoea
Tell your GP if you have any of these less common side effects. Your dosage may need to be adjusted.
Levodopa isn’t usually recommended if you’re pregnant because there’s not enough evidence that it is safe to take during pregnancy. If you’re pregnant, or you’re thinking about becoming pregnant, discuss with your GP the potential risks of continuing to take levodopa.
Don’t take levodopa if you’re breastfeeding because it can be passed through your breast milk and may adversely affect your baby.
Botulinum toxin
Botulinum toxin is usually used as a first-line treatment for most other types of dystonia.
Botulinum toxin stops the neurotransmitters that are responsible for muscle spasms from reaching the affected muscles. It’s given by injection directly into the affected muscles.
The effects of the injection usually last for three months after which time you’ll need to have another injection. The site of the injection may feel painful for a few days although 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 region may lead to swallowing difficulties
- 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.
Anticholinergics
Anticholinergics are a type of medication that are used to treat some types of focal dystonia. However, they’re not effective for everyone and may not be offered in many cases.
Anticholinergics work by blocking the release of a neurotransmitter called acetylcholine which is known to cause muscle spasms in some cases of dystonia. Trihexyphenidyl and procyclidine are two examples of these types of medication.
Side effects of anticholinergics include:
- dry mouth
- constipation
- difficulties urinating
- blurred vision
- memory 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 to relax affected muscles.
Diazepam and clonazepam are two types of muscle relaxants that are often used to treat dystonia.
Depending on the pattern of your symptoms, muscle relaxants can be given by injection (intravenously) or in tablet form (oral). Side effects of muscle relaxants include:
- 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 will have withdrawal symptoms such as anxiety, sweating or tremors (shaking).
If your care team decides that you should stop taking muscle relaxants, your dose will gradually be reduced.
Physical therapy and ‘sensory tricks’
Many people with dystonia find that their symptoms significantly improve by touching the affected body part or a nearby area. This is known as a sensory trick.
For example, people who have cervical dystonia (where the neck muscles spasm and tighten) often find that their symptoms improve by touching the back of their head or the side of their face. In some cases, it’s possible to replicate the effects of these sensory tricks by using splints and braces to support the affected body parts.
Physical therapy is also an effective way of helping you to improve your posture and prevent the shortening or weakening of affected muscles. This can be achieved using a combination of exercise and braces.
Your GP should be able to refer you to a NHS physiotherapist. Alternatively, there are many private physiotherapists. The Chartered Society of Physiotherapists website has details of physiotherapists in your local area.
Surgery
Surgery may be recommended if your dystonia fails to respond to medication or physical therapy. A number of different surgical techniques can be used. They’re described below.
Selective peripheral denervation
Selective peripheral denervation is a type of surgery that can be used to treat cervical dystonia.
During surgery, the surgeon will make an incision in your neck, before cutting some of the nerve endings which are connected to muscles that are prone to spasms. The surgery is performed under general anaesthetic, which means that you’ll be unconscious throughout the procedure and unable to feel any pain or discomfort.
Following the procedure, you’ll lose some feeling in your neck due to the nerves being disconnected.
Selective peripheral denervation is generally a safe type of surgery. Complications are rare. However, complications can include:
- post-operative infection in the neck
- short-term swelling of the neck
- a feeling of pins and needles in the neck
- occasional short episodes of pain in the neck
Deep brain stimulation (DBS)
Deep brain stimulation (DBS) is a type of brain surgery that can be used to treat dystonia. During surgery, small holes will be drilled into your skull.
The surgeon will thread a set of tiny electrodes through the holes and position them in a part of the basal ganglia called the globus pallidus. The basal ganglia is the 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 blocks the abnormal nerve impulses that are produced by the basal ganglia, which lead to the symptoms of dystonia.
The most common complication of deep brain stimulation is that either the pulse generator stops working or the electrodes become displaced, which may require further surgery to correct.
As deep brain stimulation is a new technique, there’s little information regarding its long-term safety or effectiveness. Therefore, before deciding to have deep brain stimulation, you should discuss the risks and benefits of the treatment with your surgical team.
If you have deep brain stimulation, 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 deep brain stimulation. The benefit should continue to increase over the next few years after surgery.