My Journey to a Tardive Dyskinesia (TD) Diagnosis — and Treatment
Disclaimer: This article depicts Nycole’s personal experiences with tardive dyskinesia (TD). Individual patient experiences will vary. Nycole was compensated by Neurocrine Biosciences, Inc. to share her story.
If you are currently taking medication — or have considered taking medication — to manage and treat a mental health condition, you know that each treatment can have its own potential adverse consequences. Researching a medication’s potential adverse consequences can help you and your health care provider make informed decisions about starting or continuing that medication.
One possible adverse consequence of long-term antipsychotic medication usage, a common treatment option for those living with certain mental health conditions, is tardive dyskinesia (TD). Tardive dyskinesia is thought to be a result of abnormal dopamine signaling in the brain and results in uncontrollable body movements in the face, neck, arms, and legs. Tardive dyskinesia can significantly impact your daily life, but there are treatment options available.
Below, Nycole shares her path to a TD diagnosis and treatment — including why it’s important for her to stay on INGREZZA® (valbenazine) capsules, a medication that helps control her movements while allowing her to continue her regimen of mental health medications.
The Onset of My Movements
I’m a mom of four — two sons, two daughters. My two oldest kids are now out of the house, and my two younger kids are in high school and junior high. My life revolves around my kids.
My troubles with uncontrollable movements began after I started taking antipsychotics for my bipolar disorder. I began to experience uncontrollable movements in my face and my hands. I noticed it at about the same time that my kids did — we’d be sitting together on the couch, watching TV, and they’d ask me, “Mom, why are you moving?”
The movements made me feel embarrassed and self-conscious. I didn’t like going into public knowing that people would see the uncontrollable movements and might judge me, so I isolated myself. But the hardest part was that it became difficult to work. I was working as a secretary, and suddenly my hands couldn’t stay on a keyboard. I also had a waitressing job, and the uncontrollable hand and arm movements made me drop a tray of beer. I knew something was wrong and I wanted answers so that I could continue to work and support my kids because not being able to support them was the worst feeling I’d ever felt.
It’s Tardive Dyskinesia
I went to my psychiatrist for answers, but I felt I wasn’t getting much help. I had read about tardive dyskinesia, but when I brought up my concerns and symptoms to this psychiatrist, she said that TD was rare. I had been seeing this psychiatrist for insurance reasons, but after I switched insurance, I was able to go back to my former psychiatrist, whom I really trusted, to get a second opinion. I thought that she would take my concerns more seriously – and she did. I’m glad that I kept advocating for myself.
My psychiatrist listened to me and conducted a series of movement tests to determine if what I had was TD. That’s when I was diagnosed with TD. It was a relief to know that my movements had a name and that I was back to working with a health care provider that I had a good relationship with; however, at the time of my diagnosis, there were no FDA-approved treatments for TD.
We tried a few things, including a combination of herbs and vitamins, but nothing worked to control my movements. The arm movements were very significant, so much so that I couldn’t work or drive. I experienced movements in my eyes that made it difficult to see and caused me to trip a lot. So, I continued to isolate myself, and I felt ashamed. I even skipped my nephew’s wedding because the movements were so obvious and debilitating. I was afraid of being stared at. My psychiatrist knew how much the uncontrollable movements were affecting me. She told me that there would soon be a drug available that treated TD in adults. I was hopeful but remember thinking that it wasn’t coming fast enough.
So when INGREZZA became available, she prescribed it to me. Before starting treatment, my psychiatrist talked to me about what I could expect and said that the most common side effect is sleepiness.
My Life Now
I was amazed at the difference INGREZZA made in reducing my movements. I started noticing changes in 2 weeks, and my kids did too. In 2 months, there was a significant reduction in my movements. I could brush my own hair again. I could cook for my kids again. That one meant a lot to us, because we love hanging out together in the kitchen and playing music while I make dinner. When the TD movements were at their worst, I couldn’t use my arms, so it was difficult to cook for my kids. With my movements reduced, I was able to make dinner again and we were able to have family kitchen nights. Even more importantly, better control over my TD helped me to work again and support my kids. The self-confidence that I had lost from the uncontrolled movements and not being able to work slowly came back as my TD improved. It is also important that INGREZZA allows me to stay on the regimen of the mental health medications that I need. This is my experience. Talk with your health care provider about your current medications before beginning INGREZZA.
When my movements were at their worst, I couldn’t provide for my kids, and I hid from the world. Now that my movements are reduced, I’m back to being an active mom. INGREZZA has given me increased control over my movements.
If you’ve taken mental health medications and are struggling with uncontrollable movements, ask your health care provider about treatment options for TD, like INGREZZA. It could make a difference in your uncontrollable movements, too.
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).
- involuntary movements (chorea) of Huntington’s Disease. INGREZZA does not cure the cause of involuntary movements, and it does not treat other symptoms of Huntington’s disease, such as problems with thinking or emotions.
It is not known if INGREZZA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
INGREZZA can cause serious side effects in people with Huntington’s disease, including: depression, suicidal thoughts, or suicidal actions. Tell your healthcare provider before you start taking INGREZZA if you have Huntington’s disease and are depressed (have untreated depression or depression that is not well controlled by medicine) or have suicidal thoughts. Pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts, or feelings. This is especially important when INGREZZA is started and when the dose is changed. Call your healthcare provider right away if you become depressed, have unusual changes in mood or behavior, or have thoughts of hurting yourself.
Do not take INGREZZA if you:
- are allergic to valbenazine, or any of the ingredients in INGREZZA.
INGREZZA may cause serious side effects, including:
- Sudden swelling from an allergic reaction (angioedema). Sudden swelling has happened after the first dose or after many doses of INGREZZA. Signs and symptoms of angioedema include: swelling of your face, lips, throat, and other areas of your skin, difficulty swallowing or breathing, and raised, red areas on your skin (hives). Swelling in the throat can be life-threatening and can lead to death. Go to the nearest emergency room right away if you develop these signs and symptoms. Your healthcare provider should stop your treatment with INGREZZA.
- 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, dizziness or fainting, or shortness of breath.
Tell your healthcare provider right away if you have a change in your heartbeat (a fast or irregular heartbeat), or if you faint.
- Neuroleptic Malignant Syndrome (NMS): NMS is a serious condition that can lead to death. Call a healthcare provider right away or go to the nearest emergency room if you develop these symptoms and they do not have another obvious cause: high fever, stiff muscles, problems thinking, very fast or uneven heartbeat, or increased sweating.
- 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.
Sleepiness (sedation) is a common side effect with INGREZZA. While taking INGREZZA, do not drive a car or operate dangerous machinery until you know how INGREZZA affects you. Drinking alcohol and taking other drugs that may also cause sleepiness while you are taking INGREZZA may increase any sleepiness caused by INGREZZA.
The most common side effect of INGREZZA in people with tardive dyskinesia is sleepiness (somnolence).
The most common side effects of INGREZZA in people with Huntington’s disease are sleepiness (somnolence), allergic itching, rash, and trouble getting to sleep or staying asleep.
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 www.fda.gov/medwatch or call 1-800-FDA-1088.
Please see INGREZZA full Prescribing Information, including Boxed Warning.