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Psychopharmacology
Shining a Light on Tardive Dyskinesia
This condition can be a side effect of certain antipsychotic medications.
Posted May 20, 2022 Reviewed by Davia Sills
Earlier this month, in the first week of May, many mental health advocates, psychiatrists, and patients around the country observed Tardive Dyskinesia (TD) Awareness Week. Tardive dyskinesia is a condition impacting the nervous system that causes involuntary movements; it may occur after the prolonged use of certain psychiatric medications. I spent the week reading articles to learn more about involuntary movement disorders and was inspired by stories of TD recovery.
A personal story
Over the years, I heard of tardive dyskinesia (TD) but was not very familiar with it. I had witnessed TD only once, in the face of an older man at a homeless shelter. The poor homeless man who I encountered many years ago actually had severe TD. I couldn’t help noticing how he kept sticking out his tongue and puckering his lips every several seconds, continually. I was struck by his movement disorder and had great compassion for him.
Personally, I began taking antipsychotics in 2007, and after 10 years, I did not expect to ever develop TD.
But in 2017, only a few months after the first medication for TD was approved by the FDA, I noticed that my mouth was unusually dry. I felt as though I had developed a tic in my face.
I thought back to the homeless man with TD, which made me certain I did not have tardive dyskinesia, as my symptoms were mild.
But my involuntary movements progressively became worse. I noticed movement in my mouth as though I were chewing gum, even though nothing was in my mouth. I started licking my front teeth. I tried drinking more water, as well as lip gloss to moisten my mouth and lips, but to no avail.
When meeting with friends, I found myself looking away, trying to get their focus off of my face. I had been recording motivational interviews about schizophrenia recovery for work and wondered if I would need to stop appearing in videos, and even possibly change my career.
But what career would be possible with these disfiguring movements, especially in my face? I thought of lawyers, math teachers, or real estate agents struggling with TD. Most jobs would be very difficult due to face-to-face interaction with others.
About that time, after I had struggled with the movements for a few months, one of my doctors noticed my TD over a virtual conference call. He confirmed that the movements I was experiencing were indeed tardive dyskinesia. He also offered me hope—in 2017, after there had been no effective treatment available for TD for decades, two new medications for tardive dyskinesia were approved by the FDA.
Thanks to this psychiatrist, I gained a greater understanding of TD as a serious and disfiguring neurological movement disorder and a potential side effect of medications that block dopamine receptors, which can affect the face, neck, arms, body, and legs. TD is a late-onset side effect that occurs after prolonged exposure to certain medications, including antipsychotic drugs which are approved by the FDA for the treatment of schizophrenia, bipolar disorder, and treatment-resistant depression.
However, there is hope for recovery, thanks to two FDA-approved medications called VMAT-2 inhibitors. These medications reduce the hypersensitivity of dopamine receptors in the region of the brain that controls muscle movements and gradually eliminate the involuntary and embarrassing movements of TD.
My psychiatrist also said that the newer, second-generation antipsychotic medications are associated with far lower rates of TD compared to the older, first-generation class of antipsychotics. Risk factors for TD include long duration of antipsychotic medications, older age, female gender, diagnosis of a mood disorder, post-menopaused status, abusing drugs and alcohol, and diabetes.
Key takeaways
As I write this article in May of 2022, I have been on a VMAT-2 inhibitor for nearly five years. The medication has not eliminated my involuntary movements completely but has helped significantly. Thanks to this medication, I continue to appear in videos about schizophrenia recovery and still work as a mental health advocate.
Today, it is vital for psychiatrists to carefully watch their patients on antipsychotics for tardive dyskinesia. I know a doctor who told me a story—he was bald, and he hated being bald, but when he visited his doctor, he didn’t mention it because he knew there was nothing to be done. Tardive dyskinesia used to be the same way, as there were no effective treatments available. But today, psychiatrists and neurologists have treatment options, so it is absolutely necessary to identify and treat TD as soon as possible, ideally when it is still mild and before it progresses.
I know a nurse who said, “You are pregnant, or you are not pregnant. You have TD, or you don’t!” Her message was to treat tardive dyskinesia as soon as possible for the best possible outcome.
During the last 10 years, I have been so encouraged by medication breakthroughs and enjoy learning about new drugs in the pipeline. The VMAT-2 inhibitors are one of the biggest advances we have seen for a very long time, offering hope for tardive dyskinesia.
