I was 20 years old when I was diagnosed with tardive dyskinesia (TD), and the only real reaction I had was confusion. For seven years prior, I had struggled with depression and mania (as I would later learn) in the shadows. When I turned 18, my mental health struggles got a name: bipolar disorder. I had originally gone to my psychiatrist expecting a depression diagnosis and minor medication management. She told me that I had a much more complicated and complex disorder that wouldn’t be as easy to treat as I was hoping. We went through months of trial and error, trying many different medications. Eventually, we found a miracle combination; the cornerstone of my treatment was an antipsychotic, which worked remarkably well. But just as mental illness is unpredictable and ever-changing, my experience on an antipsychotic didn’t remain as positive as I’d hoped.
During one appointment with another doctor, he noticed that I was blinking hard pretty constantly. He asked about it, and I told him I noticed it but assumed it was just a strange habit. He asked me several follow-up questions and, based on my answers and symptoms, he told me I had something called tardive dyskinesia. I’d never heard of it and didn’t know what it meant. Was it just a medical term for blinking hard? And what did this have to do with my psychiatric medications?
TD is not a well-known condition, and due to my lack of awareness, it took me a while to fully wrap my head around it. For that reason, I wanted to provide answers to many of the questions I had before (and after) I fully understood TD. I’m not a doctor, so this information is based on my conversations with my doctor, as well as my own research on TD.
What is tardive dyskinesia?
Tardive dyskinesia is a side effect of long-term antipsychotic medication use, which can be used to treat mental illnesses like bipolar disorder. Tardive dyskinesia causes uncontrollable movements, sometimes referred to as “tics,” in the face, neck, arms and legs. Some common signs include hard blinking, sticking the tongue out and puffing out the cheeks.
The first step in treating TD is the discontinuation of the medication. Most people who receive a TD diagnosis will see an alleviation in symptoms after stopping the medication, and many see their uncontrollable movements cease altogether within a year. However, TD can become chronic. Depending on how long a person was on the medication and the time between onset and diagnosis, the symptoms can be more severe and continue, even after the medication is long out of their system. If the movements persist for a year, it might be considered permanent. Time may not eliminate symptoms of TD, but the good news is that there are treatments that may be able to help with TD symptoms, if recommended by your doctor. If you are suspecting that you may be experiencing TD symptoms or have just been diagnosed with TD, please know that there are resources for you and your doctor to explore together.You are not alone with a TD diagnosis.
How does psychiatric medication cause movement problems?
It’s a logical question. How can a medication that improves symptoms like mood swings and hallucinations make people blink hard or swing their arms uncontrollably? It may be helpful to dip a toe into some science.
The brain is controlled in part by chemicals called neurotransmitters. These little molecules help the brain send messages to itself and the body, but they first have to connect to what are called “receptors,” or little doorways for the chemicals to send their messages through. Most neurological and psychiatric disorders are caused by some imbalance or malfunction in neurotransmitters. Therefore medications to treat these disorders target those neurotransmitters to help correct these imbalances or malfunctions. Antipsychotic medications do this with dopamine.
People who live with disorders treated with antipsychotics normally show too much dopamine in their brains. Antipsychotic medications provide what you can think of as “roadblocks” for the little doorways that dopamine uses. Since there is too much dopamine in the brain, stopping the excess dopamine corrects the imbalance for many people. Lowering dopamine levels has been shown to improve symptoms and quality of life for people.
But dopamine doesn’t just affect mental states. It also has many wide-ranging effects on the brain. Many movement disorders are also caused by atypical levels and functions of dopamine in the brain, and medications to treat those disorders also target dopamine pathways. Research in movement disorders is complicated and sometimes controversial, but the consensus among many researchers and clinicians is that most movement disorders are caused by the opposite problem from bipolar disorder. Instead of an excessive amount of dopamine, movement disorders are linked to a deficiency in dopamine. Therefore antipsychotic medications can bring the levels down too low. While this can improve mental symptoms, it can also create the same conditions as movement disorders.
How can I recognize tardive dyskinesia in myself?
When I started my medications, I didn’t know what potential side effects to look out for. And after I was on them for a significant amount of time, I assumed side effects couldn’t develop anymore. However tardive dyskinesia doesn’t usually begin to appear until after at least a few months, if not a year or more. That is the first thing to know about TD: it likely won’t develop right away.
It’s also important to educate yourself about the symptoms. Blinking hard constantly or sticking your tongue out are abnormal movements and not something that should be brushed off. Journaling is a good way to monitor how you respond to new medications and track when things in your mental and physical health change. It can also assist your physicians in establishing timelines for your conditions. For those who take a lot of medications or have to change medications frequently, I recommend journaling to monitor how your body and mind are feeling.
What should I do if I think I have tardive dyskinesia?
If you start to notice abnormal movements and wonder if you’re developing TD, there are a few things you should and shouldn’t do:
- DO NOT just stop taking your medications. Stopping medications of any kind can sometimes require weaning off them, rather than stopping abruptly. This can be especially true with psychiatric medications.
- DO contact your doctor right away. The earlier it’s addressed, the better the prognosis will be for recovery. Contact whatever doctor prescribed you the antipsychotic. Be detailed and honest about what you are experiencing.
- DO be honest. Follow their instructions and tell them exactly what you’re experiencing.
I have tardive dyskinesia. What should I be doing?
I’m not a doctor, but I do live with TD, so I can offer my experience, if it helps. After I received my TD diagnosis, my psychiatrist quickly weaned me off my antipsychotic, and we began to search for a new medication combination to treat my bipolar disorder. He referred me to a neurologist, whom I still work with, to help manage my symptoms. Your doctor may refer you to a neurologist since they specialize in neurological conditions like TD. Even though TD is a result of psychiatric medications, psychiatrists aren’t experts in movement disorders; they deal with mental health issues and medications. I never liked the idea of adding another doctor to the list of ones I saw regularly, but seeing my neurologist was one of the best decisions I’ve ever made for my health. This isn’t a recommendation for you to go find a neurologist (that’s a personal choice between you and your care team). But in my experience, neurologists are very knowledgeable and caring specialists that have changed my life for the better. If you have TD, consider asking your doctor about a neurologist.
Brian is a proud Super Contributor for The Mighty, writing stories and articles about mental health/illness and physical/chronic illness. He graduated in 2021 with a BS in Neuroscience from American University in Washington D.C. and was driven by his passion for mental illness research during his undergraduate studies. Brian is now a first-year seminarian at Wesley Theological Seminary in Washington D.C. pursuing to become an ordained pastor. He hopes to be a bridge between the science of mental and physical illnesses, personal experience, and spirituality to ultimately help people on their own journeys. In his downtime, Brian is a freelance portrait photographer and enjoys studying the intersections of science and philosophy.
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