Dystonia is a condition in its own right. You may experience it separately to Parkinson’s or your dystonia may be connected to your Parkinson’s. It is more common in people who are diagnosed with Parkinson’s at a younger age.
Dystonia is a movement disorder that happens when incorrect brain signals cause contractions in various muscles. This is when muscles become tighter and shorter than normal, making them stiff. Dystonia can feel painful and uncomfortable.
These contractions may also involve visible twisting movements, or spasms, which create unusual postures in the affected body part. They may be constant or last for a short period of time.
Sometimes dystonia may happen during a certain activity. This is referred to as 'task-specific' dystonia.
You might also find your dystonia gets worse if your body is in a particular position.
Dystonia is often considered a type of dyskinesia, which can involve broader uncontrollable body movements.
The features of dystonia and dyskinesia can be similar so it’s useful to know how they are different.
Find out more: see our information on dyskinesia.
The main symptoms of dystonia include:
- muscle cramps and spasms
- muscle stiffness
- uncontrolled blinking
- tremors (shaking)
- pain and discomfort.
You may experience some of these symptoms at the same time. How long they last can vary.
Dystonia appears to relate to problems with the basal ganglia. This is the area of the brain that controls movement.
One type of dystonia is a genetic or hereditary condition called ‘primary’ dystonia. This means that it runs in families.
However, people with Parkinson’s usually get dystonia as a symptom of their condition or as a side effect of levodopa. This is called ‘secondary’ dystonia.
Dystonia and levodopa
In Parkinson’s, dystonia is most often linked to levodopa.
Dystonia mostly happens as the levodopa treatment is wearing off. This is when the drug becomes less effective before you take your next dose.
If you take your last dose of medication last thing at night, you may experience 'off' dystonia when you wake up in the morning. This is most likely to affect your legs and feet. You may experience painful spasms and might not be able to get out of bed until your first dose of medication starts to work.
Sometimes your levodopa creates too much dopamine stimulation and this can cause ‘on’ dystonia.
It can happen as a ‘switching on’ effect as your levodopa starts to work. It can also happen at peak-dose, when your levodopa is most effective.
Dystonia as a feature of Parkinson’s
More rarely and often in people diagnosed at a younger age, Parkinson’s itself can cause dystonia. The spasms and movements may happen at any time of the day but usually last for a shorter time than dystonia linked to levodopa.
Dystonia usually happens on the side of your body that Parkinson’s affects the most. It can affect a single muscle or a group of muscles.
Legs and feet
Dystonia can cause spasms in your calf muscles. It can make your toes curl under your foot, or make your big toe extend out or up. Your foot may also turn in at your ankle.
Head and neck
Dystonia can cause unusual postures of your head, neck and shoulders.
If you experience these postures, you may find that your head pulls to one side. It might also bend forward, sideways or backward.
Hand spasms may happen when you are performing fine movements, such as writing. This is known as ‘writer’s cramp’ and can be associated with hand tremor.
Dystonia can cause your eyelid muscles to contract, making you blink a lot. You may also experience irritation or a burning feeling, and your eyes may become sensitive to light. Stress, looking up or down, reading or bright lights might make these things worse.
Dystonia in your eyelids can be brief or last for a longer period of time. It usually starts in one eye and often spreads to both.
Your healthcare professional may refer to dystonia in your eyelids as ‘blepharospasm’.
Dystonia can cause spasms in your vocal cords. This can affect your speech including the pitch, volume and quality of your voice.
If you experience problems with your voice you may find it helpful to see a speech and language therapist. Speak to your healthcare professional about getting a referral.
The first step is to try to work out what is causing your dystonia. If your dystonia is connected to levodopa, your medication regime may need adapting.
You may find it helpful if you or your carer keep a diary of when your dystonia happens, so you can work out if it is linked to your medication. This will help to explain the problem to your specialist or Parkinson’s nurse.
Find out more: see our information on monitoring your Parkinson’s.
The timing of medication for different types of dystonia
Taking Parkinson's medication in different ways and at different times may help your dystonia.
Some options are listed below. You should discuss these with your GP, specialist or Parkinson’s nurse before making any changes to your medication.
Last thing at night you could try taking:
- a controlled-release dose of levodopa if you experience dystonia as your medication wears off in the morning. This allows the levodopa to enter your body slowly instead of all at once
- long-acting dopamine agonist medication, that will lessen the effects of dystonia when you wake up
First thing in the morning you could try:
- dissolvable levodopa medication. This takes effect more quickly but is does not last as long
- a combination of a standard levodopa tablet and a dissolvable levodopa tablet
Other options for your Parkinson’s medication include:
- taking smaller doses more frequently
- adding other medications to your drug regime, which make your levodopa work for longer
- taking medication that releases a continuous, lower level of dopamine stimulation. This can help to reduce dystonia that happens when your levodopa is at peak-dose
If you have any questions about dystonia and your Parkinson’s drugs, speak to your specialist or Parkinson’s nurse about the best options for you.
If your dystonia does not respond to changes to your Parkinson’s medication, there are other options, including:
- drugs that relax your muscles such as clonazepam (Rivotril)
- Baclofen (Lioresal), which is also a muscle relaxant
- anticholinergics such as Trihexyphenidyl (Benzhexol) and Procyclidine
Remember that not all of these treatments will be suitable for everyone. So make sure you talk to your specialist, Parkinson’s nurse or GP about what’s best for you.
Botulinum toxin is the medical name for a drug called Botox. It is also called NeuroBloc or Dysport. It is injected into your muscles to block the signals in your brain causing your dystonia. This weakens your muscles for a short period, which might help ease your symptoms.
Botulinum toxin injections need to be repeated every three months.
Many people find that sensory tricks give short relief from dystonia. You could try:
- touching the affected body part
- touching a nearby body part
- stretching the affected limb
There is no evidence to explain why these tricks might work. However, it might be because your brain senses an unusual action which interrupts the dystonia, and gives you more control.
Speak to your GP, specialist, Parkinson’s nurse or physiotherapist to find out more about sensory tricks.
Some people also find that being relaxed helps their dystonia.
Deep brain stimulation (DBS) is sometimes used to control Parkinson's symptoms, including dystonia, if your medical treatment is no longer working effectively.
DBS involves putting very fine wires into the brain. The wires have electrodes at the ends, which allow small electrical currents to pass into the brain.
Some people with Parkinson's who have deep brain stimulation find that it is helpful for their dystonia. However, not everyone will have the same experience and there are risks. Speak to your specialist, Parkinson's nurse or GP to discuss whether surgery is an option for you.
This organisation offers support to all people with dystonia. It has a range of information on the different forms of the condition and the treatments available. It also has a number of local branches throughout the UK.
They can give you details of qualified physiotherapists in your area.
Anyone can experience muscle cramps but they are more common in people with Parkinson’s.
Muscle cramps happen when your muscles shorten and tighten causing sudden, sharp pain. In many cases you will be able to feel them, but not see them happening.
Episodes of muscle cramp usually last less than 10 minutes, although your muscles can feel tender for up to a few hours.
However, your Parkinson’s is unique to you and people may experience muscle cramps differently.
It is not always possible to know what causes muscle cramps.
They may be the result of:
- not moving around enough
- doing too much
- poor circulation
Some people with Parkinson’s say that muscle cramps happen because of something specific. This could be sleeping in a particular position or doing an activity involving unusual muscle movement. However, others say muscle cramps appear to happen without there being any cause.
There is no one way to get rid of your muscle cramps, but there are lots of things that can ease them. You may find it helpful to try the following things.
- Massaging your muscles.
- Being more active and trying to move around more during the day.
Being active is good for everyone and it’s especially good for you if you have Parkinson’s. It can help you manage your symptoms and make an impact both physically and mentally.
If you experience muscle cramps it’s important to do get active in a way that is right for you. This could be as simple as chair-based exercises or muscle stretches.
Find out more about the benefits of physical activity and the different types to focus on.
You may also find physiotherapy helpful.
A physiotherapist will assess your muscles and any movements that seem to cause your cramps or make them worse. They can give you stretching exercises that may help to ease stiffness and soreness and improve your posture.
Your GP should be able to refer you to a physiotherapist. You could also see one privately.
If exercises are not working and you’re still having problems with muscle cramps, talk to your GP about medication options. They may suggest:
- over-the-counter painkillers, such as paracetamol
- muscle relaxants
Quinine is sometimes prescribed for muscle cramps and can be effective.
You should only take quinine on the advice of your health professional. Speak to your GP, specialist or Parkinson’s nurse to discuss if this treatment is right for you.
Quinine can worsen irregular heart rhythms. So if you have a history of heart problems, tell your health professional.
Some people with Parkinson’s tell us that they find tonic water eases their muscle cramps because it contains quinine. However, tonic water only contains very small amounts of quinine and there is limited evidence that it is effective.
People with Parkinson’s may also experience dystonia. This can feel similar to muscle cramps but it is managed differently. So make sure you get diagnosed correctly before taking quinine. You can read more about dystonia in the next section.
Managing Parkinson's motor symptoms
Motor symptoms affect your movement. Specialist physiotherapist Bhanu Ramaswamy explains more about 3 common motor symptoms - tremor, dyskinesia (involuntary movements) and dystonia - and how you can manage them.
Next update due 2023
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