Tardive dyskinesia (TD)
Find information on what tardive dyskinesia is, what causes it and what you can do to manage it.
Tardive dyskinesia (TD) is a condition where your face, body or both make sudden, irregular movements which you cannot control. It can develop as a side effect of medication, most commonly antipsychotic drugs.
- Tardive means delayed or appearing late – TD usually develops after you've been taking medication for a few months, or sometimes years.
- Dyskinesia means abnormal or unusual movements.
It started with uncontrollably blinking and stretching my nose/top lip. I remember myself and my close family being quite confused as to why I was doing it!
Experiencing signs and symptoms of TD can make it hard to do day-to-day activities. It can also be very stressful or upsetting. For example, you may feel:
- self-conscious about movements caused by TD
- upset that you cannot control what your body is doing
- uncomfortable and restless
- tired or worn out if the movements happen a lot
- angry, particularly if you didn't know about TD as a side effect of medication
- that it's very hard or impossible to predict when you'll experience symptoms.
Having TD has made me very socially anxious and shy. I am constantly aware of my twitches and I wonder if people notice and, if so, what they are thinking...
Awareness of TD has improved, but unfortunately doctors don't always remember to tell people about this risk when prescribing antipsychotics. Doctors don't always have to tell you about every side effect. These are listed in the patient information leaflet (PIL) you get with medication too.
If your health condition is severe, your doctor may also think that the treatment is necessary, no matter the side effect. There are also some situations where you can be given medication without your consent.
Can I make a complaint if I get tardive dyskinesia?
If you begin to develop TD and your doctor does nothing about it, or doesn't spot the signs, this may be considered clinical negligence. This means a healthcare professional has failed in their duty to take care of you, and you experienced damage or loss as a result of that failure.
For more information about complaints, see our page on complaining about healthcare. You can also contact the Patient Advice and Liaison Service (PALS). This NHS service gives confidential, impartial advice on problems experienced in NHS healthcare.
For more information about what your doctor should do before giving you medication, see our page on psychiatric medication.
I had a year-long psychosis as a teenager. Treating the psychosis was utterly prioritised – the side effects of the medication were not properly explained to me or my family as far as I can remember.
If you're taking any medication and think you might be experiencing TD, it's important to speak to a doctor or pharmacist for advice. To speak to someone right away, you can contact the NHS by calling 111.
You can also report side effects to the Medicines and Healthcare Products Regulatory Agency (MHRA) through its Yellow Card Scheme.
This information was published in December 2021. We will revise it in 2024.
References and bibliography available on request.
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