Tardive dyskinesia (TD)

Treating and managing tardive dyskinesia

This page covers:

• Changing or coming off your medication
• Additional drugs and treatments for tardive dyskinesia
• Managing your day-to-day tasks

Changing or coming off your medication

As antipsychotic medication is one of the main causes of TD, making changes or coming off this medication can help some people. Different things work for different people, so coming off medication entirely might not be an option for everyone. What will work, or what you want to try, is completely up to you.

Changing medication

If you've found an antipsychotic that helps you manage your mental health problem, you may not want to stop taking it. This can be a difficult decision, especially if you feel unsure about what will help you the most in the long term.

Before you decide to stop taking medication, you and your healthcare professional may consider changing medication instead. You might be able to:

• take a lower dose of medication
• change your medication, particularly from a first-generation to a second-generation antipsychotic.

Your doctor should then monitor how you're getting on and whether any changes are regularly affecting you.

There is no single medication that works best for everyone – we all respond to them differently. It might take some trial and error to find out what medication works best for you.

Over a period of a couple of years my psychiatrist made medication changes and the symptoms eventually abated. I know I run the risk of them returning as I still am on quite a lot of medication.

Coming off medication

If you identify the signs of TD early and are able to stop or change your medication, it might eventually go away completely. However, this doesn't happen for everyone and could take a long time. For some people, TD may never go away, even after stopping or changing medication.

It's also important to remember:

• It's possible that you may only get TD when you start to come off antipsychotics. In this case, you may decide to stay on your medication.
• Sometimes, withdrawal can cause involuntary muscle movements or movement disorders that look like TD, but this often gets better with time.
• The longer you've been taking a drug, the more likely you are to feel withdrawal effects, and find it harder to come off. You may need to reduce your dose very gradually to minimise these effects. For more information, see our pages on coming off medication.

Thankfully I saw an understanding GP who took me off the antipsychotic and contacted my psychiatrist to change me to another more suitable medication.

Deciding whether to come off medication

If changing your medication doesn't work for you, you might consider coming off medication altogether.

You might want to think about these questions before doing this:

• How does TD affect you and your day-to-day life?
• How does your medication help you and your day-to-day life?
• Do you experience other unwanted side effects from your medication, as well as TD?
• How likely are you to relapse if you come off your medication entirely?

Talk these over with your healthcare professional. They may have suggestions to help you cope with or minimise problems. For example:

• coming off anti-Parkinson's drugs may reduce the risk of getting TD, if you're taking these in the first place
• learning self-care tips to help you better cope with your symptoms.

I gradually stepped down my antipsychotics over two months using diazepam to help with the muscle pain/spasm and mindfulness to help focus my moods and anxiety.

Additional drugs and treatments for tardive dyskinesia

Some research suggests that the following treatments could help you manage symptoms of TD:

Drugs on prescription

In the UK, there are not many approved treatments for TD. But trials are being carried out on certain medications that already have approval in other countries.

At the moment, the only drug licensed for treating TD is tetrabenazine. It's a drug used to treat movement disorders. However, common side effects of this drug include Parkinsonism, anxiety and depression, so you may want to think carefully before considering this option.

Medical procedures

Some researchers are looking into treating TD through the use of:

• Deep Brain Stimulation (DBS)
• botulinum toxin, which is also called Botox.

However, studies have not yet been able to confirm if these treatments are safe for TD, or whether they work. DBS is sometimes used to treat symptoms of Parkinson's, and Botox for symptoms of dystonia.

Over-the-counter supplements

Studies suggest that some supplements or herbal medicines which you can buy over the counter – meaning without a prescription – may help with TD. However, more research is needed to be sure.

Some of these supplements include:

• Vitamin E – a supplement that may help to stop TD from getting worse, but has not been shown to stop the condition entirely.
• Vitamin B6 – a supplement that might help with TD.
• Ginkgo biloba – a herbal medicine that might help with TD.

It's important to talk to a doctor or pharmacist before taking any new medication. This includes over-the-counter drugs, as some drugs could interact badly with each other. It's also important to always follow the instructions on the packet or patient information leaflet.

See our page on herbal remedies for more information.

Managing your day-to-day tasks

Changing medication or getting other treatments might not work for everyone. Sometimes, it means that TD may be a condition you have to learn to live with.

Some people with TD find that it impacts their life significantly, but others might not. Some symptoms might impact your ability to:

• eat, drink or prepare food easily
• carry items
• write with a pen, pencil, or use a smartphone
• get around by yourself – if you normally drive, you might need to tell the DVLA if you're no longer fit to drive.

If your symptoms are having this kind of impact on your life, your TD might be considered a disability under the Equality Act 2010. This means you may be eligible for additional help, such as:

• a blue badge if you drive – for more information on this, visit the Parkinson's UK website
• grants or loans to make your home accessible
• benefits to help with your financial needs
• reasonable adjustments at work, in education, or when using services – for more information on what you might be eligible for, see our legal page on reasonable adjustments.

"It made me feel stupid and very depressed. It was funny sometimes, however it soon became painful. I didn't want to go outside as I felt embarrassed.

This information was published in December 2021. We will revise it in 2024.

References and bibliography available on request.

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