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Neurotransmitters are chemical messengers that the brain and muscles use to communicate with each other. When this messenger system works correctly, the body is able to initiate and coordinate movements. However, there are some medications, mainly antipsychotic drugs, that interfere with the functioning of these neurotransmitters, which can lead to difficulties, and can, in some people, produce drug-induced movement disorders such as tardive dyskinesia.
The first-generation antipsychotic drugs which are also known as typical or conventional, act predominantly by blocking dopamine D2 receptors in the brain. These drugs are more likely to cause a range of side effects, including tardive dyskinesia.
According to the National Institute for Health and Care Excellence (NICE), first-generation antipsychotics include:
- The phenothiazine derivatives such as chlorpromazine hydrochloride, fluphenazine decanoate, levomepromazine, pericyazine, prochlorperazine, promazine hydrochloride and trifluoperazine.
- The butyrophenones such as benperidol and haloperidol.
- The thioxanthenes such as flupentixol and zuclopenthixol.
- The diphenylbutylpiperidines such as pimozide.
- The substituted benzamides such as sulpiride.
According to a 2021 study by UCL and City, University of London researchers, England has seen a modest rise in psychotic symptoms in recent years, while antipsychotic medication use has doubled over the same period. The lead author of the study, Dr Natalie Shoham (UCL Psychiatry), said: “The reasons for the disproportionate increase in antipsychotic medication use are difficult to explain.
It might be because more people are being treated successfully for distressing symptoms, or that the medications are being used for other reasons, for example to treat depression or as anti-sickness medications. These figures also may reflect an over-medicalisation of psychotic symptoms.
Some people might be taking these medications for longer, or people with relatively minor symptoms might be more likely to be prescribed antipsychotics. Given the significant side effects of antipsychotics, it is important that prescriptions are reviewed regularly and that the impact of increased prescribing is carefully considered.”
There appear to be very few statistics on how many people are affected by tardive dyskinesia, either worldwide or in the UK; however, a study published in the journal Neurotherapeutics estimated that approximately 700,000 people may have the condition in the US.
What is tardive dyskinesia?
Tardive dyskinesia (TD) is a disorder marked by random and involuntary muscle movements that usually occur in the face, tongue, lips or jaw. It is a condition of potentially irreversible abnormal involuntary movements that are associated with dopamine receptor blocking agents (DRBAs), which can produce significant impairment of functioning and quality of life for patients.
Tardive dyskinesia is a more taxing condition than some other involuntary movement conditions as it can be permanent. Occasionally, symptoms do disappear but, unfortunately, this is rare – around 1 in 10 cases.
Research suggests that, if the medication causing the tardive dystonia has been taken for only a short period of time, remission of symptoms is more likely than if the medication has been taken for a longer period.
What are the signs and symptoms of tardive dyskinesia?
Tardive dyskinesia mainly causes these involuntary movements of the face, tongue, lips or jaw including:
- Lip smacking, puckering or pursing.
- Tongue thrusting or protrusion.
- Repetitive chewing motions.
- Rapid eye blinking.
Occasionally those with tardive dyskinesia experience:
- Flexing, or thrusting, of the trunk or hips.
- Repetitive writhing, twisting or dancing movements of the fingers or toes.
- Akathisia – This is feelings of inner restlessness.
Stress and anxiety are known to exacerbate the symptoms.
The severity of tardive dyskinesia varies widely from person to person. Some people may not even be aware that they are experiencing involuntary movements, nor are they bothered by them, whilst others may develop speech, swallowing and even breathing problems, which can make them feel embarrassed and uncomfortable.
Antipsychotic drugs can cause tremors, too. This type of involuntary movement disorder is a rhythmic shaking of one or more body parts, whereas movements caused by tardive dyskinesia are irregular and unrhythmic.
It usually takes many months or years to develop symptoms of tardive dyskinesia, but the side effects can sometimes arise in just six weeks of taking antipsychotic drugs. It is also possible, although rare, for tardive dyskinesia symptoms to start after a person has stopped taking a medication that can cause it.
What causes tardive dyskinesia?
Tardive dyskinesia is now widely recognised as a neurological disorder associated with the administration of antipsychotic drugs. Antipsychotic drugs, formerly called major tranquillisers, are also known as neuroleptics.
Antipsychotic drugs are used for a number of mental health disorders, mainly schizophrenia, schizoaffective disorder, and bipolar disorder, sometimes called manic depression, but may also be used in severe or difficult to treat anxiety or depression. There may be other medications that are also responsible for tardive dyskinesia, including antidepressants, antiemetics, used for severe nausea and acid reflux, and anxiolytics, used to treat anxiety, according to a review published in 2017 in the Ochsner Journal, but these have been less well studied.
Tardive dyskinesia primarily occurs as a side effect of long-term use of antipsychotic medications, and higher doses of an antipsychotic can add to the likelihood of the condition. It can occur from short-term use of the medication, but it usually doesn’t appear before the three-month mark, and rarely occurs after a single dose.
This condition is thought to occur because of an increase in the number of dopamine receptors. Dopamine is a neurotransmitter that not only helps control the part of the brain that signals reward and pleasure but also plays a big role in coordinating muscle movements.
Many of the medications that cause tardive dyskinesia, as well as being prescribed for mental health conditions such as schizophrenia and bipolar disorder, can also be prescribed to help manage other conditions.
According to NICE, the second-generation antipsychotic drugs, also referred to as atypical, act on a range of receptors in comparison to first-generation antipsychotic drugs and are generally associated with a lower risk for acute extrapyramidal symptoms and tardive dyskinesia.
What are the risk factors of tardive dyskinesia?
Tardive dyskinesia may occur after neuroleptic treatment, and the risk of it developing rises with increasing age and prolonged exposure to the offending drug. At least 20% of people who take older neuroleptic medications experience this side effect. It is even more common in women and older adults, affecting up to 30% of postmenopausal women who take neuroleptic medications.
A cohort study involving 261 patients aged over 55 years and previously untreated with conventional antipsychotic drugs, revealed that the cumulative rates of tardive dyskinesia were 25% after one year and 53% after three years of cumulative exposure to conventional antipsychotics.
Other risk factors for tardive dyskinesia when taking antipsychotic drugs can include:
- Female sex.
- Longer illness duration.
- A history of prior movement disorders during use of dopamine-blocking medications.
- A genetic predisposition to tardive dyskinesia.
- Brain developmental disorders.
How is tardive dyskinesia diagnosed?
A doctor may make a diagnosis of tardive dyskinesia if a person is taking a medication that can cause it, has signs and symptoms of the problem, or has undergone testing such as blood tests, or they may perform MRI scans of the brain to rule out other neurological or movement disorders that can cause similar symptoms.
Many different rating scales including the Abnormal Involuntary Movement Scale (AIMS) have been developed to detect tardive dyskinesia in people who are taking neuroleptic drugs and to track the severity of their symptoms over time. During an AIMS test, the doctor will gauge the involuntary movement throughout the patient’s body on a five-point scale, assessing the severity of movements. The AIMS may be administered before a neuroleptic drug is prescribed so the doctor has a baseline against which to compare future results.
The long-term prognosis for people with tardive dyskinesia varies. When diagnosed early, controlled stopping of the medication that is triggering symptoms can resolve the problem, though in some cases, the symptoms may persist indefinitely or worsen over time.
After drug withdrawal, tardive dyskinesia disappears over a period of three years in about 60% of patients; however, the remainder have persistent symptoms.
How is tardive dyskinesia treated?
There is no standard treatment for tardive dyskinesia; NICE recommends that antipsychotic treatment should be carefully and regularly reviewed and that any changes to the dose or the drug should be made gradually, over weeks or months, to minimise the risk of withdrawal tardive dyskinesia. However, some drug manufacturers suggest that drug withdrawal at the earliest signs of tardive dyskinesia may halt its full development.
In cases of tardive dyskinesia where it is not possible to stop taking the drug, additional drugs can be started to control the movement disorder.
These work by reducing the levels of dopamine in the brain. Alternatively, switching from a first-generation to a second-generation antipsychotic may be effective in reducing tardive dyskinesia symptoms.
Various alternative therapies and treatments have been studied for the treatment of tardive dyskinesia, but their effectiveness is unclear.
Other treatments that might be used to treat tardive dyskinesia can include:
- Oral medication.
- Botulinum toxin injections (Botox) – Studies have shown that when Botox has been injected into the genio-glossal (tongue) area, it significantly reduced the tardive dyskinesia and particularly the frequency and the severity of the tongue protrusions. This treatment may not be available on the NHS.
- Deep brain stimulation – Is a type of surgery. A pulse generator, a device like a heart pacemaker, is placed under the skin around the chest or stomach area. It is connected to one or two fine wires that are inserted into specific areas of the brain. When the pulse generator is switched on, the electrodes deliver high-frequency stimulation to the targeted area. This stimulation changes some of the electrical signals in the brain that cause the symptoms of abnormal involuntary movements.
How can tardive dyskinesia be managed?
Tardive dyskinesia can be managed. Many of the best strategies work by reducing stress, a key aggravator of tardive dyskinesia. Any movement disorder, including tardive dyskinesia, gets worse under stress, which could be due to the effects of an increased release of the brain chemical norepinephrine by the sympathetic nervous system, the famous fight-or-flight response.
Strategies to reduce stress include:
- Meditation – This is a proven stress reliever, possibly because it turns down the sympathetic nervous system’s responses to stressful situations.
- Mindfulness-based stress reduction – Mindfulness exercises are ways of paying attention to the present moment using techniques like meditation, breathing and yoga. Training helps people become more aware of their thoughts, feelings and body sensations so that instead of being overwhelmed, they are better able to manage them.
- Practising deep breathing – Mental stress activates the sympathetic nervous system, sending your body into fight-or-flight mode. During this reaction, stress hormones trigger physical symptoms such as a faster heartbeat, quicker breathing and constricted blood vessels, which exacerbates tardive dyskinesia.
- Getting more physical activity – If you are feeling stressed, moving your body on a consistent basis may help. If you are currently inactive, start with gentle activities such as walking or cycling. Choosing an activity that you enjoy may help increase your chances of sticking to it in the long term.
- Following a healthy diet – Several vitamins and minerals play an important role in the body’s stress response and mood regulation. As such, a deficiency in one or more nutrients may affect mental health and the ability to cope with stress. Studies show that people who follow a diet high in ultra-processed foods and added sugar are more likely to experience higher perceived stress levels. When chronically stressed, magnesium levels may become depleted. Eating more whole foods such as vegetables, fruits, beans, fish, nuts and seeds can help ensure that the body is properly nourished which, in turn, may improve resilience to stress.
- Practising self-care – Studies show that people who engage in self-care report lower levels of stress and improved quality of life, while a lack of self-care is associated with a higher risk of stress and burnout. Taking time for yourself is essential in order to live a healthy life.
- Reduce caffeine intake – Caffeine is a chemical found in coffee, tea, chocolate and energy drinks that stimulates the central nervous system. Consider cutting back by replacing coffee or energy drinks with decaffeinated herbal tea or water.
Other strategies that can help to manage tardive dyskinesia include finding ways to adapt and learning new ways to complete everyday tasks. Some people with tardive dyskinesia suffer from social anxiety; try not to assume that other people notice the movements – other people may not be as focused on the movement as the person themselves thinks, and worrying that people have noticed will only increase the stress.
This involuntary condition can cause stress, embarrassment, and even depression to those experiencing it. Interacting with other people can cause people to feel self-conscious about their facial movements. This is why it can be really helpful to join a support group, where you can help yourself and others at the same time by leaning on each other for support.
Organisations providing help and support include:
- Dystonia UK – Information and support for anyone experiencing dystonia (a type of tardive dyskinesia). Includes a helpline, online forum and support groups.
- Bipolar UK – Information and support for people affected by bipolar disorder, hypomania and mania. Offers a telephone peer support line, and an online peer support community.
- The National Tremor Foundation – Help, support and advice for anyone living with any form of tremor.