Tardive dyskinesia from antipsychotic medicines: symptoms and what to do

“Dyskinesia” means abnormal, involuntary movement and “tardive” means late, as the problem tends to appear after medicine has been taken for some time rather than at the start. The Royal College of Psychiatrists lists tardive dyskinesia among the possible side effects of antipsychotic medication and describes it as involuntary movements, usually of the mouth, tongue and jaw, and less commonly of the trunk, arms or legs.

Antipsychotics are used mainly for schizophrenia and bipolar disorder and can be used for severe or hard-to-treat anxiety or depression. They affect chemicals in the brain, mainly dopamine, which the Royal College notes is also involved in the control of muscles and movement. That link is why movement-related side effects are among those that clinicians watch for.

The Royal College of Psychiatrists states that tardive dyskinesia is usually only seen in the elderly and/or with long-term treatment. Risk is therefore generally linked to age and the length of time on an antipsychotic. The NHS adds that the side effects of typical, older antipsychotics include shaking, trembling, muscle twitches and muscle spasms, whereas both typical and atypical antipsychotics can cause drowsiness, weight gain, blurred vision, constipation and dry mouth.

The Royal College notes that individuals react differently to antipsychotics, particularly in their side effects, and that antipsychotic medicines vary in the side effects they cause. The choice of medicine should be discussed between you and your psychiatrist, weighing benefits against side effects.

Not every unusual movement is tardive dyskinesia. The Royal College lists several other movement-related effects: stiffness and shakiness, called parkinsonism because the symptoms resemble Parkinson’s disease, and uncomfortable restlessness, called akathisia. They are listed separately from tardive dyskinesia.

The NHS says other medicines can also cause uncontrollable physical movements. For example, metoclopramide, a medicine for nausea, lists tics, tremors, muscle stiffness and spasms as its most common serious side effect, which can happen as soon as you start the medicine and may be a sign that the dose needs adjusting. If you notice new movements while taking any medicine, tell the prescriber, who can work out which medicine is responsible.

The NHS says to tell your care co-ordinator, psychiatrist or GP if side effects become severe. It adds that there may be an alternative antipsychotic you can take or additional medicines that will help you deal with the side effects, and that your medicine and any side effects will be closely monitored for the first few months.

It is natural to feel worried by new movements, particularly of the face. It can help to ask someone you trust to tell you if they see anything new. Describe when the movements happen, how long they have been going on, and whether anything makes them better or worse, as this helps the prescriber.

Do not stop or reduce the medicine on your own. The NHS says to not stop taking your antipsychotics without first consulting your care co-ordinator, psychiatrist or GP, because you could have a relapse of symptoms. The Royal College adds that antipsychotics are not addictive, but the body gets used to them and stopping suddenly may make you feel physically and mentally unwell, so any reduction should be gradual and supervised.

The Royal College of Psychiatrists says clozapine is the only medicine shown to help people with schizophrenia whose illness has not responded to other antipsychotics. It has very little effect on the dopamine systems that control movement, so it causes hardly any of the stiffness, shakiness, slowness or restlessness of other antipsychotics. It also does not seem to produce tardive dyskinesia and can actually be used to relieve it in some people.

Clozapine has its own demands. It can affect the bone marrow and lower white blood cell counts, which makes infection more likely, so regular blood tests are required: weekly for the first 18 weeks, then every two weeks up to one year and then monthly. Decisions about switching are made by a specialist after weighing symptom control against side effects.

Antipsychotic medicine can be very effective. The Royal College says that for the vast majority of people having a first episode of schizophrenia, symptoms are much reduced by antipsychotic medication, and that for people with more than one episode, stopping the medicine more than doubles the risk of becoming unwell again and needing hospital care.

That balance is why a side effect such as tardive dyskinesia is managed through a conversation about dose, choice of medicine and monitoring, not through abruptly stopping treatment. Talking treatments, practical support and regular reviews are usually added to medication, not used in its place.

Antipsychotic prescribing is usually overseen by an NHS community mental health team, with the GP sharing care. A private psychiatrist can provide a second opinion on medicines and side effects, but any change should be coordinated so that the GP and care team know what you are taking. Bring a list of your current medicines to every appointment, and tell any clinician who prescribes for you that you take an antipsychotic.