Tardive Dyskinesia

Tardive dyskinesia is a movement disorder that causes involuntary, repetitive body movements you cannot control. It typically develops as a side effect of medications that block dopamine in your brain, and while symptoms can range from barely noticeable to severe, understanding this condition is the first step toward managing it effectively.

Table of contents

• What is tardive dyskinesia?
• Symptoms and affected body parts
• Causes and medications that trigger TD
• Who is at higher risk?
• How is tardive dyskinesia diagnosed?
• Treatment options
• What to expect: Outlook and reversibility
• Preventing tardive dyskinesia
• Living with tardive dyskinesia

What is tardive dyskinesia?

Tardive dyskinesia (TD) is a neurological syndrome (a condition affecting your nervous system) that causes involuntary movements you cannot control. The word “tardive” means delayed or late, while “dyskinesia” refers to involuntary muscle movements. This name reflects a key feature of the condition: there is typically a delay between when you start taking certain medications and when the movement problems begin^[1].

Many people take medications for months or years before developing tardive dyskinesia. However, TD can also appear after short-term medication use, particularly in people over 65 years old^[1]. The condition affects approximately 600,000 people in the United States^[14].

Taking antipsychotic medications (also called neuroleptics, which are drugs that affect nerve function) is the main cause of this condition, but other types of medications can trigger it as well^[1]. The official medical definition states that tardive dyskinesia is a medication-induced movement disorder that persists despite stopping or changing the medications. To confirm a diagnosis, symptoms must continue for at least one month after discontinuing the medication^[3].

Researchers estimate that at least 20% of all people who take first-generation antipsychotic medications develop tardive dyskinesia. The newer types of antipsychotic medications, called atypical antipsychotics, appear to have lower rates of about 20%, compared to about 30% for typical (older) antipsychotics^[6].

Symptoms and affected body parts

Tardive dyskinesia causes involuntary, repetitive movements that can affect different parts of your body. These symptoms can range from mild and barely noticeable to severe, and they may interfere with daily activities in about 20% of people with the condition^[6].

The disorder typically affects your facial muscles, tongue, neck, trunk muscles, and limbs^[1]. Healthcare providers sometimes describe these symptoms using medical terms like dystonia (uncontrollable muscle contractions), myoclonus (brief, sudden muscle movement), or tics (habitual muscle contractions, often in your face)^[1].

Facial involuntary movements may include lip-smacking or making sucking motions with your mouth, grimacing or frowning, sticking your tongue out or against the inside of your cheek, chewing movements, puffing your cheeks, and rapid eye blinking^[1]. Healthcare providers often refer to uncontrolled movements in your face as orofacial dyskinesia, which specifically affects your lips, jaw, or tongue^[2].

Other involuntary movements throughout your body may include making repetitive finger movements like you’re playing the piano, tapping your feet, flapping your arms, thrusting or rocking your pelvis, crossing your legs repeatedly, shrugging your shoulders, twisting or stretching your neck, and swaying from side to side^[1][2]. Some people experience difficulty walking, with movements that resemble a duck-like gait, or an inability to remain physically still, which is called akathisia^[1].

These movements can be fast or slow, and you may find it hard to work and stay active^[2]. In some cases, a person’s legs can be so affected that walking becomes difficult or impossible^[6].

Causes and medications that trigger TD

Researchers don’t know the exact cause of tardive dyskinesia, but the main theory involves how certain medications affect your brain. The condition develops from long-term use of dopamine receptor-blocking medications (also called dopamine antagonists), which are drugs that prevent dopamine from working normally in your brain^[1].

Dopamine is a neurotransmitter, which is a brain chemical that helps your nerves and body function, including controlling movement^[2]. When medications block dopamine for a long time, this may make the dopamine receptors in your brain extra sensitive, especially in your basal ganglia, a part of your brain that helps control movement. Excess dopamine or extra sensitive receptors can lead to involuntary movements^[1].

TD can develop after short-term and long-term use of these medications, though it’s more likely after long-term use. The condition can also happen after stopping a medication, changing it, or reducing the dosage^[1].

In addition to dopamine, other neurotransmitter receptors may be involved in the condition, including serotonin, acetylcholine, and GABA. This may explain why medications other than antipsychotics can occasionally lead to tardive dyskinesia^[1].

Antipsychotic medications

Antipsychotic medications (neuroleptics) are the primary cause of tardive dyskinesia. These medications mainly treat mental health conditions involving psychosis, such as schizophrenia and bipolar disorder^[1][2].

Typically, first-generation antipsychotics with increased dopamine receptor affinity are associated with a higher risk of causing tardive dyskinesia. Specific medications that can cause TD include haloperidol (Haldol), fluphenazine, chlorpromazine, perphenazine, prochlorperazine, and trifluoperazine^[5]. Newer medications like olanzapine (Zyprexa) and risperidone (Risperdal) can also cause it^[2].

The longer you take these medicines, the higher your chances of getting TD. Symptoms may not show up for three months or more after taking these medications, but there have been rare cases of TD after a single dose^[2].

Other medications

Besides antipsychotics, other medications can cause tardive dyskinesia. Medicines that treat nausea, reflux, and other stomach problems (called antiemetics) can also lead to TD. You might notice symptoms after three months or more of use. These include metoclopramide (Reglan), which treats a stomach problem called gastroparesis, and prochlorperazine (Compazine)^[2][5].

In rare cases, TD may develop due to certain antidepressants such as amitriptyline, fluoxetine, phenelzine, sertraline, and trazodone^[1][5]. Other rarely implicated medications include lithium, anti-seizure medications such as phenobarbital and phenytoin, antihistamines (specifically hydroxyzine), and antimalarials^[1][5].

Who is at higher risk?

While anyone taking dopamine-blocking medications can develop tardive dyskinesia, certain factors increase your risk. Age is a significant risk factor. The risk of developing TD is greater in older people, particularly those over 40 years of age, and becomes even higher over age 65^[2][6].

Gender also plays a role. Women are more likely to get tardive dyskinesia than men, especially women who have gone through menopause^[2]. People with mood disorders such as depression or bipolar disorder who receive antipsychotic medications may have a higher risk^[6].

Research is ongoing into genetic factors that can also raise your risk for TD^[2]. Additionally, having other medical conditions can increase your risk^[2].

How is tardive dyskinesia diagnosed?

The diagnosis of tardive dyskinesia is based on your symptoms after healthcare providers rule out other potential causes^[6]. There is no specific blood test or imaging study that definitively diagnoses TD. Instead, your healthcare provider will carefully observe your movements and review your medication history.

According to medical guidelines, to confirm a diagnosis of tardive dyskinesia, symptoms must persist for at least one month after discontinuation of the medication that may have caused it^[3]. This is an important distinction because some movement problems that occur while taking these medications may be temporary and resolve when the medication is stopped.

Your healthcare provider will need to distinguish TD from other conditions that can cause similar movement problems, such as Huntington’s disease, cerebral palsy, Tourette syndrome, and other forms of dystonia^[6].

Treatment options

While there is no cure for tardive dyskinesia, several treatment approaches can help manage symptoms. The first step in treatment often involves adjusting the medication that may have caused TD.

Medication adjustments

When TD is diagnosed, your healthcare provider will either have you stop the medication slowly or switch to another one^[5]. Not everyone who takes medications that can cause TD will be able to stop them safely, as some people need to continue treatment for their underlying mental health condition^[11].

If you need to continue taking an antipsychotic medication, your healthcare provider may switch you to an atypical antipsychotic like clozapine, which has a lower risk of causing or worsening TD^[6]. Your doctor can help you by lowering the dose, adding another medication to prevent the movements, or switching you to a different medicine^[2].

Specific TD medications

We now have medications called VMAT inhibitors that specifically treat tardive dyskinesia^[11]. If TD is mild or moderate, various medicines may be tried to treat it. A dopamine-depleting medicine called tetrabenazine is the most effective treatment for TD. Another medication called valbenazine is an alternative^[5].

For specific symptoms, botulinum toxin injections may be used to lessen the involuntary movements^[6][7].

Advanced treatments

If TD is very severe and other treatments haven’t helped, a procedure called deep brain stimulation (DBS) may be tried. DBS uses a device called a neurostimulator to deliver electrical signals to the areas of the brain that control movement^[5]. Several case series have evaluated the application of deep brain stimulation to the internal globus pallidus (a structure in the brain), and all reported notable improvements of motor symptoms without major psychiatric side effects^[7].

What to expect: Outlook and reversibility

The outlook for people with tardive dyskinesia varies considerably. With treatment, some people see a resolution of symptoms, while others do not^[6]. The condition is typically not reversible, but treatment may help manage the symptoms^[1].

If diagnosed early, TD may be reversed by stopping the medicine that caused the symptoms. However, even if the medicine is stopped, the involuntary movements may become permanent, and in some cases, may become worse^[5]. In about 20% of people with TD, the disorder interferes with daily functioning^[6].

If TD is present in the setting of long-term drug therapy, reversibility can be determined primarily by the severity of symptoms and how long symptoms have been present before the long-term drug has been stopped^[6]. It’s important to note that stopping antipsychotic medication may temporarily worsen symptoms before any improvement occurs^[6].

Preventing tardive dyskinesia

The best approach to preventing tardive dyskinesia involves careful use of medications that can cause it. Before administering any treatment that may block dopamine receptors, healthcare providers should obtain informed written consent^[9].

Prevention efforts include using the lowest possible dose of antipsychotic or other dopamine-blocking medications and discontinuing use when possible^[6]. Throughout the course of therapy, healthcare providers should regularly reevaluate the need for continuation of these medications^[9].

All patients currently treated with dopamine antagonists, even those who have taken these medications for many years, should be reevaluated for possible change of medication. Atypical antipsychotics appear to have a lower risk of tardive dyskinesia^[9].

If you’re taking medications that can cause TD, it’s important to let your doctor know right away if you notice any uncontrollable movements. Early diagnosis can ease your symptoms^[2].

Living with tardive dyskinesia

Living with tardive dyskinesia can be challenging, but there are strategies that can help you manage symptoms and maintain quality of life. Everybody’s experience of tardive dyskinesia looks a little different, and the involuntary movements associated with the condition can be temporary or permanent^[11].

Building your care team and support system

Movement disorders like TD have many different facets, so it’s important that your healthcare providers work together to understand and manage your condition. Depending on the type and severity of your symptoms, your care team may include a neurologist, physical therapist, dietitian, psychologist, and more^[11].

Tardive dyskinesia affects over 500,000 people in the U.S., so you’re not alone. There are many ways to connect with and learn from people who deal with TD every day. From adaptive equipment recommendations to personal experiences, your peers can offer both practical information and the depth of understanding that you need in challenging moments^[11].

Support groups can be particularly valuable. After receiving a TD diagnosis, joining a movement disorder support group can help you learn to accept and understand your symptoms better^[12].

Daily management strategies

Keeping detailed records of your symptoms and daily activities can help you identify triggers, track treatment progress, and uncover helpful patterns^[11]. Some people with tardive dystonia (a subtype of TD) discover sensory tricks that can reduce or correct muscle contractions. These tricks might be practical actions like sucking on a straw or toothpick to reduce tongue movement, or rubbing your eyebrow to correct eyelid dystonia^[11].

Movement disorders tend to worsen under stress. Any stress, whether physical, medical, surgical, or psychological, can worsen tardive dyskinesia. If you’re experiencing acute stress, like being the focus of attention during a presentation, whatever involuntary movement you have is likely to be worse^[11]. Relying on routine and cultivating comfort in your environment can help minimize stress-related symptom worsening.

Healthy habits

Healthy habits and a comfortable daily routine may make your TD symptoms more manageable^[11]. You can help manage TD by caring for your overall wellbeing with regular exercise, particularly low-impact activities like yoga or swimming. It’s also important to eat a balanced diet rich in fruits, vegetables, and whole grains, and consider mindfulness practices like meditation or deep breathing to ease stress and enhance emotional resilience^[14].

Practical adaptations

Sometimes, living your best life with TD involves adapting to changes. If TD affects your ability to perform specific tasks, explore tools and techniques that make everyday activities more manageable. Occupational therapy can teach you ways to navigate challenges and maintain independence^[11].

Some people find that TD impacts their walking or makes tasks like buttoning a shirt or putting on a belt difficult^[12]. Being prepared for these challenges and having strategies to address them can help maintain your independence.

Coping with social situations

Dealing with others’ reactions to involuntary movements can be one of the more difficult aspects of living with TD. It’s not uncommon to feel self-conscious or worried about being judged by others^[13]. Remember that raising awareness for TD is important not only for family members and those living with the condition but also for the general public, so they have a better understanding when they encounter someone with TD^[12].

Staying positive and celebrating your achievements, big or small, can help you focus on what you can control. Pursuing hobbies and activities that bring you joy reminds you that TD doesn’t define you^[14].

TD, tardive syndrome, orofacial dyskinesia, linguofacial dyskinesia, tardive dystonia, tardive oral dyskinesia

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