Tardive dyskinesia (TD) causes you to make involuntary movements with your face and sometimes your body. Certain medications that treat psychiatric, gastrointestinal, and neurological conditions can bring on this movement disorder. 

What are the symptoms of tardive dyskinesia?

Involuntary facial movements are the top sign of tardive dyskinesia. As many as 2 out of 3 people with tardive dyskinesia are unaware that they’re making these facial twitches or motions. Still, these actions can be distressing for the patient or their loved ones. Repetitive facial muscle contractions may eventually lead to muscle tightness and pain. 

You may also feel restless, a symptom called akathisia. You may experience an increase in repetitive movements as your body tries to soothe this restless feeling.

Up to 70% of people with tardive dyskinesia experience mild symptoms. These symptoms can gradually get worse over time or during periods of stress. Most people don’t have symptoms when they’re asleep.

Someone with tardive dyskinesia may:

• blink rapidly

• grimace or frown

• have repetitive finger movements (like they’re playing the piano)

• make chewing motions

• make sucking, fish-like motions with their mouth 

• smack their lips 

• stick out their tongue or probe the inside of their cheeks with their tongue

• thrust or rock their pelvis

• walk with a duck-like gait

Approximately 3% of people with tardive dyskinesia develop severe, sometimes life-disabling, symptoms. These symptoms include:

• breathing problems

• difficulty swallowing

• irreversible facial changes, such as drooping eyes or mouth

• trouble speaking

From the community: “I have info from 2 points of view: my own (…male), and fellow TD suffer (… female) with whom I've been corresponding daily. In both cases, the symptoms have good and bad days. The symptoms appear to get worse while under stress or using a stimulant like caffeine (coffee or soda). Her psych weaned her off the causative drug and prescribed alternate drugs to help with stress and sleep. My psych has opted to continue my anti-psychs, and prescribed a mediating drug for the TD. In both cases, we have yet to see a significant improvement in the symptoms, but they haven't gotten worse. In her case, the TD is more pronounced and causes pain. In my case, the TD is less pronounced and does not cause terrible pain. In both cases the muscle strain is unbearable...think of trying to smile and hold up your eyebrows for a day...your face muscles would ache quite a bit....its like that. Its also mentally exhausting trying to control the symptoms. The symptoms seem to be more pronounced when being absorbed in something like reading or watching a movie. The twitching movements are impossible to control as they come on instantly.” – Inspire member

When do tardive dyskinesia symptoms develop?

Certain medications cause tardive dyskinesia. You may need to take these medicines to manage a psychiatric, gastrointestinal, or neurologic condition.

Most people take these medicines for years before tardive dyskinesia symptoms occur. More rarely, a person develops symptoms within six weeks of starting a medication.

What parts of the body does tardive dyskinesia affect?

Tardive dyskinesia most commonly affects muscles in the face, but it can cause involuntary movements throughout the body. In adults, the condition tends to affect just one part of the body. In children, the condition often affects multiple parts of the body.

Involuntary muscle movements may be:

• focal: affecting only one part of the body like the face

• segmental: affecting two or more body parts that are connected, like the face, neck, and arms

• generalized: affecting the torso along with two other parts of the body like the arms or legs

What makes tardive dyskinesia symptoms worse?

Consuming high amounts of caffeine (more than 1,000 milligrams a day) may intensify tardive dyskinesia symptoms. Other stimulants like nicotine, ephedrine, and ginseng may also worsen involuntary movements. Some people find that their symptoms get worse when they feel stressed.

What is the difference between tardive dyskinesia and tardive dystonia?

Dystonia affects the body differently. Symptoms are often more severe than dyskinesia. Tardive dystonia causes involuntary muscle contractions that twist the body into unusual, sometimes painful, positions.

People with tardive dystonia commonly have muscle contractions, or spasms, in the neck and torso. Dystonia on one side of the body may trigger the same response on the opposite side. A sensory trick like placing a hand on the person’s face can sometimes temporarily stop a dystonic movement.

Tardive dystonia is more likely to occur when you take certain medications for three months or longer. Signs of tardive dystonia include:

• flexing wrists 

• jerking limb movements that improve when you walk

• tipping head backward 

• arched back

• rotating, extending, and bending arms

How do tardive dyskinesia symptoms differ from acute dystonia?

Acute dystonia, or acute dystonic reaction, is a more immediate reaction to medications than tardive dyskinesia. Symptoms typically appear within hours or days of starting a medicine. It can also occur if your doctor increases the medication dosage or lowers the dosage of an anticholinergic drug that blocks certain neurotransmitters (chemicals that send messages between nerve cells).

Acute dystonia most commonly occurs when you take butyrophenone antipsychotics like haloperidol. Symptoms include:

• arched back

• eyes that roll upward or to the side

• head tilt backward or sideways

• open mouth 

• protruding tongue

What other problems are associated with tardive dyskinesia?

Some people with tardive dyskinesia symptoms become self-conscious about their appearance. They may not go out much or choose not to gather with friends or family. This isolation can lead to depression, anxiety, and strained relationships with loved ones.

How is tardive dyskinesia diagnosed?

There is growing awareness among medical professionals about tardive dyskinesia. If you’re taking a medication known to cause the condition, your doctor may closely monitor you for signs. Early detection may reduce symptom severity.

During a physical exam, your doctor will review your medical history and assess your symptoms. Because you may not notice when you’re making these involuntary muscle movements (and you can’t see what your face is doing), it may be helpful to bring a loved one with you to the appointment. This person can share information about the symptoms.

There isn’t a diagnostic test for tardive dyskinesia. For diagnosis and treatment, you may see a movement disorder specialist. This medical doctor is a neurologist who has advanced training in the diagnosis and treatment of movement disorders.

Depending on your symptoms, your doctor may want to conduct tests to rule out other movement disorders, like Parkinson’s disease. The diagnostic process may include:

• Physical exam to evaluate how the nervous system is functioning. 

• Blood and urine tests to rule out infections, illness, and other problems.

• Electroencephalogram (EEG) to measure the brain’s electrical activity.

• Electromyography (EMG) to measure electrical signals (communication) between muscles and nerves.

What conditions cause symptoms similar to tardive dyskinesia?

An accurate diagnosis is key to reducing symptoms before they get worse. Tardive dyskinesia causes symptoms similar to:

• essential tremors

• muscle cramps and contractures

• other movement disorders like Parkinson’s disease 

• tic disorders like Tourette syndrome

How do doctors treat tardive dyskinesia symptoms?

Many people see an improvement in symptoms when they stop taking the medication that causes tardive dyskinesia, or they change the dosage. You should only take these steps under a doctor’s supervision. There are medications and other treatments for tardive dyskinesia.

Sources

• Tardive dyskinesia. Baylor Medicine. 2018.

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

• What is dystonia? Dystonia Medical Research Foundation.

• Dystonia. Mayo Clinic. April 2020.

• Treating oromandibular dystonia: Tricks and medical management. Herman Ostrow School of Dentistry of USC. February 2020.

• 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.

• Medication-induced tardive dyskinesia: A review and update. The Ochsner Journal. 2017.

• Types of parkinsonisms. Parkinson’s Foundation. 

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

• What is Tourette? Tourette Association of America.

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.