Tardive dyskinesia (TD) is a condition in which people taking certain mental health medicines experience uncontrollable repetitive movements of their face, limbs, or other parts of the body, such as facial tics like lip-smacking, tongue thrusting, and rapid blinking. TD affects more than 500,000 Americans.

Tardive Dyskinesia and Movement Condition Support Group

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The estimates of tardive dyskinesia vary considerably in part related to different patient groups investigated. The primary risk factors for developing tardive dyskinesia relate to chronicity of illness, duration and dose of antipsychotic medication, and treatment with first-generation antipsychotics (older drugs).

Taking certain medicines, including antipsychotics, to treat conditions such as depression and bipolar disorder, can cause tardive dyskinesia likely due, in part, to changing dopamine receptor sensitivity.

A delay between the time someone starts taking a medication and when tardive dyskinesia develops is common. Most people take medication for months or years before developing the disorder.

Tardive Dyskinesia Diagnosis

Your doctor might diagnose you with tardive dyskinesia if you:

  • have taken neuroleptic medications for at least three months,
  • have signs and symptoms of tardive dyskinesia, and
  • have undergone testing to rule out other conditions.

Common tests include computerized tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET) scans, among others, according to the Genetic and Rare Diseases Information Center.

To detect tardive dyskinesia in people who are taking neuroleptic drugs, and to track the severity of symptoms over time, doctors might also use a tool called the Abnormal Involuntary Movement Scale (AIMS). During an AIMS test, your doctor will gauge the involuntary movement throughout your body on a five-point scale, assessing the severity of movements, per Stat Pearls.

Tardive Dyskinesia Symptoms

Tardive dyskinesia can look or feel different from person to person. TD movements occur in one or more spots of the body and are often seen in the lips, jaw, tongue, and eyes. They can also affect other parts of the body. Symptoms associated with tardive dyskinesia usually involve repetitive, involuntary movements such as:

  • uncontrollable movements of the tongue, jaw, or lips;
  • twisting, dancing movements of fingers or toes; and
  • rocking, jerking, flexing, or thrusting of trunk or hips.

Because the movements that occur are not controllable, people who experience tardive dyskinesia may feel embarrassed by them or fear being in public. Many people do not know about tardive dyskinesia, and this can lead to misunderstanding.

Risk Factors for Tardive Dyskinesia

It’s largely unknown why some people who take certain types of medications develop tardive dyskinesia while others don’t. However, there are risk factors that increase the chance of developing tardive dyskinesia. The risk of developing TD rises for certain people, including:

  • women who are postmenopausal,
  • adults 50 years or older,
  • people who have substance use disorders,
  • people living with a mood disorder,
  • cigarette smokers,
  • those with uncontrolled diabetes,
  • people who have been on antipsychotic medications for 3 months or longer, and
  • people who develop stiffness during antipsychotic treatment.

Some people may begin having symptoms while taking the medication while others might not experience symptoms until months after discontinuing the medication.

Tardive Dyskinesia Treatment Options

No matter if you have mild, moderate, or severe uncontrollable body movements, the first step is talking with a healthcare provider. Whenever you are prescribed a new medication, ask about the potential side effects to ensure the benefits outweigh the potential risks. If symptoms develop, it is important to speak to your doctor.

Some people have found that switching to a new medication, such as clozapine, will reduce or stop the symptoms as well.

Additionally, in 2017, the Food and Drug Administration (FDA) approved two medications that may be able to ease or stop symptoms of tardive dyskinesia.

Ideally, doctors and patients discuss treatment options in a process known as shared decision-making, which accounts for the individual’s needs, values, and preferences. Doing so maximizes positive health outcomes that empower and equip individuals to take charge of their health and well-being and live their lives to the fullest.

Impact on Quality of Life

Living with tardive dyskinesia and other movement disorders affects a person’s quality of life. Involuntary movements alter how someone moves through the world physically, mentally, and socially. The stigma related to living with this condition can cause social isolation and potentially worsen symptoms of depression.

For this reason, DBSA has online support groups specifically for those living with a mood disorder and a movement condition. The group will focus on coping strategies, movement conditions, depression, bipolar, and mental health.

Tardive Dyskinesia and Movement Condition Support Group

Hosted by Peer Support Specialist Jeff Fox
Tuesdays: 9 PM ET | 8 PM CT | 7 PM MT | 6 PM PT

Register Here

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Tardive Dyskinesia Discussions

In this short video series, hear from peers, advocates, and experts talk about the experience of having tardive dyskinesia and how it’s currently treated.

In this panel discussion, hear from Jeff, DBSA Chapter Leader who lives with TD and his care partner, Cheryl; DBSA Scientific Advisory Board Chair Roger McIntyre, MD; and Josie Cooper, Executive Director of the Movement Disorders Policy Coalition (MDPC)—to learn more about this condition.

In this video, hear from Amber Hoberg, Psychiatric Nurse Practitioner discuss the role of nurse practitioners in mental health care; the impact of the utilization of telehealth as it relates to the treatment of individuals who live with both mood disorders and conditions like tardive dyskinesia; and the value of shared decision-making in patient care.

Additional Resources from our Partners

Please note, DBSA does not endorse or promote a specific medication or treatment strategy. Discuss all personal health concerns with your doctor or medical professional.

Support for DBSA’s TD & Movement Condition Education & Support Campaign was made possible by Neurocrine Biosciences and Teva Pharmaceuticals