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Knowledge Base » Mental Health » What is Tardive Dyskinesia?

What is Tardive Dyskinesia?

Tardive dyskinesia is an involuntary neurological movement disorder. The condition is where your face and sometimes your body make sudden, jerky, repetitive movements that you cannot control. It can develop as a serious side effect of certain medication, most commonly antipsychotic drugs often used to treat certain mental health conditions, for example schizophrenia and bipolar disorder. The longer the medication is used, the more the risk of developing tardive dyskinesia increases.

Long-term use of these drugs may produce biochemical abnormalities in some people which causes them to develop tardive dyskinesia. People who are taking older versions of these drugs, known as first generation antipsychotics, are thought to be more likely to develop tardive dyskinesia than people using newer medications. The reason that some people develop the condition after using these drugs and some people do not is unknown.

Tardive dystonia is a more severe form of tardive dyskinesia in which slower twisting movements of the neck and trunk muscles are prominent.

What causes tardive dyskinesia?

Tardive dyskinesia is caused by long-term use of a class of drugs known as neuroleptics. These are also known as antipsychotic drugs. These drugs block dopamine receptors in the brain. Dopamine is a chemical that helps control emotions and the pleasure centre of your brain and also helps your motor functions.

Too little dopamine may interfere with your muscles and cause the signs and symptoms of tardive dyskinesia. Patients taking long-term antipsychotics should be closely monitored by their doctor. The doctor can perform tests to see if there are any signs of tardive dyskinesia, or if they already have symptoms, to see if these are improving.

Is tardive dyskinesia fatal?

The effects of tardive dyskinesia on an individual should not be underestimated. It impacts on quality of life and there is an increase in the risk of significant negative health impacts in some patients. Tardive dyskinesia is not usually fatal in itself. Some studies have suggested increased mortality rates in patients with tardive dyskinesia, however, there is no evidence to show a specific association with any specific cause of death and tardive dyskinesia.

The long-term prognosis for people with tardive dyskinesia varies. When diagnosed early, stopping the medication that is triggering symptoms can resolve the problem, though in some cases, the symptoms may persist indefinitely or even worsen over time. While the majority of tardive dyskinesia symptoms are mild, some can be severe and can cause difficulty swallowing, problems with speech, and trouble breathing.

A man struggling with an alcohol and drug problem

Who is most likely to get it?

Research suggests that you are most likely to get tardive dyskinesia if you have been taking antipsychotic drugs for more than three months, you are a woman who has gone through the menopause, are aged over 55 and regularly use alcohol or drugs. Some research suggests that the risks might also be greater if you are of African descent.

Older (first generation) antipsychotics are particularly associated with causing tardive dyskinesia. Newer (second generation) antipsychotics were developed with the aim of reducing side effects, but they can still cause tardive dyskinesia. They are thought to be less likely to cause these symptoms but the difference is still unclear, and research around this is ongoing.

What are the signs and symptoms of tardive dyskinesia?

Tardive dyskinesia is characterised by repetitive, involuntary movements.

These can include:

  • Grimacing.
  • Tongue movements.
  • Repetitive chewing.
  • Lip smacking.
  • Lip puckering.
  • Pursing of the lips.
  • Excessive eye blinking.
  • Puffing out of cheeks.
  • Frowning.
  • Rapid, involuntary movements of the limbs, torso and fingers.

In some cases an individual’s legs can be affected which can make it difficult for them to walk.

Dyskinesia of the limbs can cause you to:

  • Wiggle your fingers.
  • Tap your feet.
  • Sway from side to side.
  • Thrust out your pelvis.
  • Flap your arms.

What does tardive dyskinesia feel like?

People with a mild form of tardive dyskinesia may not notice their symptoms or be bothered by them. Other people describe it as being able to constantly feel movements in their tongue, face or body. It can sometimes cause people pain or discomfort. If the movements are continuous this can cause people to ache and feel exhausted from the movements.

If the movements are in the mouth area or tongue, people have described their tongue becoming raw and sore. People have also described feeling embarrassed by their symptoms, leading to social anxiety.

Long-term medication can cause tardive dyskinesia

Which drugs can cause tardive dyskinesia?

Tardive dyskinesia can be caused as a result of taking certain medication, most commonly antipsychotic drugs which are dopamine receptor blocking drugs. Long-term use of these drugs may produce biochemical abnormalities in the area of the brain known as the striatum. Sometimes people are not always properly informed about the effects of these drugs before starting to take them, however, awareness of the condition and reasons for it is improving and the symptoms of patients should be monitored.

Antipsychotic medication is a type of medication which is used to treat mental health conditions causing symptoms of psychosis. Psychosis is a change in the normal functioning of the brain. Someone who develops psychosis will have their own unique set of symptoms and experiences according to their circumstances.

The three main symptoms associated with a psychotic episode are:

  • Hallucinations – Where someone sees, hears, smells, tastes or feels things that do not exist outside of their mind.
  • Delusions – A delusion is where someone has an unshakeable belief in something which is untrue. A person with persecutory delusions may believe that an individual or organisation is making plans to hurt or kill them. A person with grandiose delusions may believe they have power or authority. For example, they may believe they are the prime minister of the country, or they have the power to bring people back from the dead. People who have psychotic episodes are usually unaware that their delusions or hallucinations are not real, which may lead them to feel frightened or distressed.
  • Disturbed or confused thoughts – People with psychosis sometimes have disturbed, disrupted or confused patterns of thoughts. Signs of this can include rapid and constant speech, disturbed speech, for example they may switch from one subject to another mid-sentence, or a sudden loss in train of thought, resulting in an abrupt pause in conversation or activity.

You can access further reading about the signs and symptoms of psychosis by visiting our knowledge base.

There are other mental health conditions whose symptoms include having psychotic experiences.

These include:

  • Some forms of bipolar disorder.
  • Severe depression.
  • Schizophrenia.
  • Schizoaffective disorder.
  • The psychotic symptoms of personality disorder.

Some antipsychotic drugs are also used to treat other conditions such as nausea, issues with balance or persistent hiccups. They can also be used to treat some dementia patients who are having psychotic experiences; however, this is only usually recommended if they pose a risk to themselves or others. The Alzheimer’s Society provide some helpful information about antipsychotic drug approaches in dementia care.

Examples of antipsychotic medications that can cause tardive dyskinesia include:

  • Fluphenazine – Prescribed to treat symptoms of schizophrenia and psychotic symptoms, including hostility and hallucinations.
  • Risperidone (Risperdal) – Prescribed to treat symptoms of schizophrenia and bipolar disorder.
  • Olanzapine (Zypreza) – Prescribed to treat symptoms of schizophrenia and bipolar disorder.
  • Haloperidol (Haldol) – Prescribed to treat psychotic disorders, Tourette syndrome and behaviour disorders.
  • Perphenazine (Trilafon) – Used to treat psychotic disorders, for example schizophrenia. It can also be used to control severe nausea and vomiting.
  • Thioridazine – Prescribed to treat schizophrenia.
  • Prochlorperazine (compro) – Prescribed to treat severe nausea and vomiting as well as anxiety and schizophrenia.
  • Anti-seizure drugs – These include phenytoin and phenobarbital.

Symptoms usually only develop after you’ve been taking the antipsychotic drugs for a long period of time, usually several months or sometimes years. Some cases may occur with shorter uses of the drugs, and there have been rare cases reported where someone has had symptoms after a single dose of the medication.

Some studies suggest that between 30 to 50 per cent of people taking these medications will develop tardive dyskinesia over the course of their treatment. For some people tardive dyskinesia may continue indefinitely, even after stopping or changing medication. The longer you take these medications, the more are risk you are of developing symptoms of tardive dyskinesia.

You are also thought to be at increased risk of developing symptoms if you take your medication as a depot injection (a slow release, slow acting form given as an injection). You can access further information about mental health and antipsychotic medication by visiting Rethink Mental Illness and antipsychotics.

How to diagnose tardive dyskinesia?

If you are displaying symptoms of tardive dyskinesia, a doctor is likely to make a diagnosis if you have been taking neuroleptic medication for more than three months. Doctors may use a tool called the Abnormal Involuntary Movement Scale (AIMS). During an AIMS your doctor will gauge the involuntary movement throughout your body on a five-point scale, assessing the severity of movements. Testing for other conditions will usually be ruled out first, however, before diagnosing tardive dyskinesia.

Symptoms of the following disorders can be similar to that of tardive dyskinesia:

  • Huntington’s disease – This is an inherited neurological illness. Those affected experience involuntary movements, loss of motor control, change of gait, loss of memory, and in some cases dementia.
  • Cerebral palsy – Is a disorder characterised by impaired muscle control or coordination resulting from injuries to the brain during early stages of development either before birth or in early childhood.
  • Tourette syndrome – Is a neurological movement disorder which begins in childhood between the ages of two and sixteen years. The disorder is characterised by involuntary muscular movements called tics and uncontrollable vocal sounds.
  • Dystonia is a group of complex movement disorders with various causes, treatments, progression and symptoms. The neurological conditions are characterised by involuntary muscle contractions which force certain parts of the body into abnormal, sometimes painful movements and positions. Dystonia can be caused by both genetic and non-genetic factors.
Man exercising as it can help with tardive dyskinesia

How to treat tardive dyskinesia

Treatment for tardive dyskinesia involves discontinuing the neuroleptic drugs as soon as symptoms have been identified, if this is felt to be a safe course of action from a mental health perspective. Use of an ‘atypical’ neuroleptic drug can be used in place of the neuroleptic drug that was being used, if this is felt to be safe and appropriate for the patient.

Unfortunately the ‘atypical’ neuroleptic drugs are also capable of causing these symptoms and therefore if these symptoms continue or become any worse, the original neuroleptic drugs may be used again. To ease symptoms the doctor may lower the dose, add another medication which may act as an antidote or try a different drug in its place.

Stopping and starting antipsychotic medication can also increase the risk of tardive dyskinesia increasing once you have it, and it is also possible to develop the condition after stopping taking medication. If you have found an antipsychotic medication that helps manage your mental health problem, you may not want to stop taking it. This can be a difficult decision. It is vital that you discuss with your doctor before deciding to stop taking your medication.

There are studies which are ongoing in the hope of identifying new drug therapies for the treatment of tardive dyskinesia. There are other drugs that have been used to reduce the symptoms of tardive dyskinesia, however, they carry risks of other side effects which can be unpleasant, for example causing or aggravating depression.

Living with tardive dyskinesia can be very difficult and if you cannot stop the symptoms, there are still things you can do to help manage the symptoms and help you cope day to day.

These could include:

  • Looking after your physical health and being active – Examples of this are eating well, exercising, avoiding alcohol, cigarettes and illicit drugs, and getting enough rest and sleep.
  • Focusing on your emotional wellbeing – This involves taking time for yourself, having a bath, finding a hobby or something you enjoy doing and managing stressful situations as best as you can.
  • Building your support network – Examples of this could be connecting with family and friends or connecting with support groups of people who are having similar experiences to you.
  • Accessing specialist support – This may involve specialist mental health support, CBT or counselling sessions, or it may be support from your GP in understanding your symptoms.

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About the author

Claire Vain

Claire Vain

Claire graduated with a degree in Social Work in 2010. She is currently enjoying her career moving in a different direction, working as a professional writer and editor. Outside of work Claire loves to travel, spend time with her family and two dogs and she practices yoga at every opportunity!

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