My Journey: Living with the Movement Disorder Tardive Dyskinesia

Nycole S. 42 of Winfield, Kansas, started her mental health journey when she was diagnosed with bipolar disorder in her teens. “When I was in high school, I was placed in a mental institution, which is where I received my initial diagnosis,” she says. Her doctors prescribed both anti-anxiety and several antipsychotic medications over the years.

Nycole was compensated by Neurocrine Biosciences, Inc. to share her story.

As a result of being on those medications, Nycole developed tardive dyskinesia (TD), a condition that affects approximately 600,000 people in the U.S.

What is Tardive Dyskinesia (TD)?

TD is a chronic condition that can occur in one or more parts of the body. TD is associated with taking certain kinds of mental health medicine (antipsychotics) to treat bipolar, depression, anxiety disorder or schizophrenia. Movements are uncontrollable and often seen in the lips, jaw, tongue, and eyes. It can also affect other parts of the body, including the upper body, arms, hands, legs, and feet.

Movements may appear as face twitching, involuntary eye movements, darting tongue, piano fingers, clenched jaw, rocking torso, and gripping feet.

TD affects everyone differently. Uncontrollable body movements from TD can affect people’s work, social outings, and daily activities which can have an emotional and social impact on their daily life.

One Woman’s Journey

Before Nycole noticed her TD symptoms, she was focused on being a full-time student and mom to four kids. With managing her kids’ school activities, their after-school sports, and her own school deadlines it was clear that she had a lot on her plate. “On top of everything else, I started to go through a very tough divorce, and because of this I was very anxious and always on edge. I started taking medication again to help cope with my anxiety and bipolar disorder symptoms. I ended up losing my insurance because of the divorce so I was constantly switching my medications and going to different clinics for therapy and treatments, which is when I started experiencing uncontrollable movements.”

Her movements started to appear on her face, which is where she felt them the most. “Sometimes my face would twist, and my neck would also move when my face would be distorted,” she says. “My eyes and tongue also developed tic-like movements. There were times when I couldn’t talk because my tongue wouldn’t cooperate. I would bite my tongue to try to keep it still. My arms would jerk and twitch involuntarily. I couldn’t type because I had trouble keeping my hands on the keyboard.”

Nycole recalls reading about TD on the label of one of her antipsychotic medications and decided to ask her doctor about it. “When I told my doctor at the time about these movements, she didn’t think it was TD.” Nycole was feeling frustrated and overlooked. Thankfully, she had a new job with different insurance, so she was able to go back to see her previous psychiatrist she felt comfortable with, and talked about her uncontrollable movements. After a full assessment, Nycole’s psychiatrist diagnosed her with TD and told her about a potential treatment option called INGREZZA® (valbenazine) capsules.

INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). It is not known if INGREZZA is safe and effective in children. The most common side effect is sleepiness (somnolence).

Please see Full Important Safety Information below and Prescribing Information

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Coping with TD

Once Nycole started taking INGREZZA, she saw a reduction in her movements within six weeks and noticed they were less severe. “I don’t want to say I’m back where I had once been. I still experience some movements in my arms and mouth but there is a big difference from where I started.” With the reduction in her movements, Nycole says she feels more independent, and can take better care of herself and focus on her kids. Individual results may vary.

In addition to her psychiatrist, Nycole is especially grateful for the support she received from her kids. “They are very understanding.” she says. “Sometimes I would get looks from people when my movements would show, and my kids would look out for me. They are very protective and want to make sure I feel comfortable when we’re out.”

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Actor Portrayal

Advice for Others

When asked if she has any advice for others suffering from TD, Nycole says: “find a healthcare provider that you can work with to find a potential treatment option that works for you.” Not all treatment options are right for everyone. “For me, one pill once-daily fits well with my routine. Take each day one day at a time, because that’s all you can do,” Nycole said.

By sharing her experience living with uncontrollable movements Nycole wants to shine a light on her personal journey and help others by spreading awareness. Since seeing a reduction in the movements in her face and arms after treatment, Nycole wants to help educate people about TD so others can see if there is a treatment option that may work for them.

If you think you may be experiencing involuntary movements from TD, talk to your doctor to evaluate your condition and discuss a treatment plan that may work for you. Downloading this doctor discussion guide before your visit may help inform your conversation.

This article was sponsored and developed by Neurocrine Biosciences

Approved Use

INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).

It is not known if INGREZZA is safe and effective in children.


Do not take INGREZZA if you:

  • are allergic to valbenazine, or any of the ingredients in INGREZZA.

INGREZZA may cause serious side effects, including:

  • Sleepiness (somnolence). Do not drive, operate heavy machinery, or do other dangerous activities until you know how INGREZZA affects you.
  • Heart rhythm problems (QT prolongation). INGREZZA may cause a heart problem known as QT prolongation.
  • Symptoms of QT prolongation may include:
    • fast, slow, or irregular heartbeat
    • shortness of breath
    • dizziness or fainting

Tell your healthcare provider right away if you have a change in your heartbeat (a fast or irregular heartbeat), or if you faint.

  • Abnormal movements (Parkinson-like). Symptoms include: shaking, body stiffness, trouble moving or walking, or keeping your balance.

Before taking INGREZZA, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

The most common side effect of INGREZZA is sleepiness (somnolence). Other side effects include changes in balance (balance problems, dizziness) or an increased risk of falls, headache, feelings of restlessness, dry mouth, constipation, and blurred vision.

These are not all of the possible side effects of INGREZZA. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at or call 1-800-FDA-1088.

Please see accompanying INGREZZA full Product Information

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