Tardive dyskinesia (TD) is a medication-induced neurological movement disorder. People with tardive dyskinesia are unable to control facial or body movements. These uncontrollable movements are a side effect of taking certain medications to treat mental illnesses, as well as gastrointestinal and neurological conditions.

What does tardive dyskinesia mean?

The medical term tardive dyskinesia means:

• tardive: delayed or late

• dyskinesia: involuntary, unusual muscle movements

There are many different types of dyskinesia. Tardive dyskinesia refers to the fact that the involuntary movements (dyskinesia) appear months, or sometimes years, after a person starts taking certain medications. In other words, there’s a delay between the medication and the medication side effect.

How common is tardive dyskinesia?

Approximately half a million Americans live with tardive dyskinesia. Older adults are more likely to develop chronic symptoms that don’t go away, even when you stop taking a medication.

Approximately 1 in 4 people who take antipsychotic (neuroleptic) medications for many years eventually develop tardive dyskinesia. Medications to treat gastrointestinal and neurological conditions can also cause this side effect.

What are the symptoms of tardive dyskinesia?

Dyskinesia can affect a particular part of the body or multiple parts. Tardive dyskinesia affects facial movements. A person may grimace, stick out their tongue, or smack their lips. Most people with tardive dyskinesia (an estimated 2 out of 3) are unaware they’re making these movements. Tardive dyskinesia symptoms may be mild or disabling.

From the community: “My TD symptoms have NOT gotten worse, thankfully. I'm very uncomfortable when I'm out in public because it seems like I'm making faces at people. This is driving me crazy. My constant OCD/anxiety makes it very difficult to leave the apartment, as I don't like crowds or changes in routines. TD just adds to that anxiety. I went to the dentist Wednesday and had to give him a heads up that my tongue will do its own thing, and I will not be able to hold it still for very long. Plus my jaw kept closing, making it a very difficult visit. I'm finding all this very difficult and I feel like I've lost my grounding. I feel like I'm just blowing around in a frantic storm and can't get a grip on anything to slow things down. I'm trying not to get depressed, but its taking a lot of energy to do that. The meds I'm on for my condition are at the max, and yet the symptoms still appear. And, they have caused the TD which appears to be permanent.” – Inspire member

What is tardive dystonia?

Like dyskinesia, dystonia causes involuntary muscle movements and contractions. Dystonia typically affects the neck and torso. People with tardive dystonia may twist their bodies into unusual, and sometimes painful, positions. People with dystonia often also have dyskinesia. The same medications cause both conditions.

What’s the difference between Parkinson’s disease, parkinsonism, and tardive dyskinesia?

Tardive dyskinesia, drug-induced parkinsonism, and Parkinson’s disease are movement disorders that cause involuntary muscle movements (dyskinesia). They involve dopamine, a neurotransmitter (chemical) that carries signals between nerve cells (neurons) and the body. Dopamine also controls motor function and the brain’s reward and pleasure centers.

Here’s a look at key similarities and differences:

• Parkinson’s disease

• drug-induced parkinsonism

• tardive dyskinesia

Parkinson’s disease

Parkinson’s disease affects the nerve cells that produce dopamine. As a result, people with Parkinson’s disease don’t have enough dopamine. Symptoms, such as hand and body tremors, rigidity, and balance problems, develop gradually over the years.

Parkinson’s disease is a lifelong condition. Symptoms progressively get worse. This disease often leads to leg stiffness that interferes with your ability to walk or stand.

Drug-induced parkinsonism

As the name implies, drug-induced parkinsonism is a medication side effect. People develop this condition from taking dopamine receptor-blocking medications. These medicines include antipsychotics (neuroleptics) to treat certain mental illnesses and antinausea medicines (antiemetics) for digestive problems.

People with parkinsonism have tremors, balance problems, and stiffness. They may walk or move slowly. These symptoms are temporary. They should go away within a few months or a year after you stop taking the medicine. It’s rare for symptoms to last more than a year.

Tardive dyskinesia

Like drug-induced parkinsonism, tardive dyskinesia is the result of dopamine-blocking medications. Symptoms may go away or lessen when you stop taking the medication. But in many people, the side effects are permanent. There are treatments that can help.

Experts aren’t sure exactly why these medications cause tardive dyskinesia or drug-induced parkinsonism. Not everyone who takes these medicines develops a movement disorder.

What are the types of tardive dyskinesia?

Types of tardive dyskinesia include:

• Acute: Symptoms appear within the first few months of starting a medication. These side effects don’t tend to be permanent and often improve with medication changes.

• Chronic: Symptoms appear after years of taking a medication. Symptoms persist even when you stop taking a medication or make medication changes.

How do I know if I have tardive dyskinesia?

If tardive dyskinesia is a known side effect of a medication you take, your doctor may monitor you more closely for symptoms. Your doctor can diagnose tardive dyskinesia based on symptoms and certain tests to rule out other conditions. 

Is tardive dyskinesia treatable?

Tardive dyskinesia symptoms can improve with medication changes. Sometimes, the side effects remain even when you switch or stop medicines. Your doctor may try other treatments to provide symptom relief.

From the community: “I had my neuro appointment today and actually came out of there feeling exuberant. I think I got real lucky to have found a great Dr, who knows about this disorder, on the first try. Guess someone upstairs was looking out for me. He has put me on a titration schedule to get me off the Risperidone and is starting me on Clonzipan (sp?) to try and relax me a little. My symptoms are definitely worse when I am anxious or stressed. He said we will introduce other drugs into my system once I am off the others. Dr did say there is no cure, but gave me some hope that I will find relief a little at a time over the course of time. He ordered an MRI to be sure nothing else is wrong, but agreed with my internist's diagnosis of TD. He said I did need to see a psychaitrist to help manage any depressive symptoms (if they appear)…I am learning to take this all in a little at a time, one day at a time.” – Inspire member

Sources

• Tardive dyskinesia. Baylor Medicine. 2018.

• Drug-induced dyskinesias and dystonia: Tardive syndromes. Dystonia Medical Research Foundation.

• Tardive dyskinesia. MedlinePlus. January 2021.

• Tardive dyskinesia. Mental Health America. 

• Tardive dyskinesia. Mount Sinai. June 2020.

• Tardive dyskinesia. National Alliance on Mental Illness. March 2019.

• Tardive dyskinesia. National Organization for Rare Disorders. 2018.

• What is Parkinson’s? Parkinson’s Foundation.

Disclaimer

Member comments are lightly edited for length and to remove identifying information but are otherwise reproduced as they appear in the community as part of public posts.

This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.