I routinely order ECGs, check weights, and draw labs to assess metabolic status for my patients taking second generation antipsychotics (SGAs). Before 2017, I didn’t rigorously screen for tardive dyskinesia (TD). Effectively this meant I didn’t care about it. In my private practice, I hadn’t noticed anyone with obvious TD symptoms, and no one had complained of involuntary movements, so I assumed that TD was a “solved problem”.
However, in March 2016, I met a 27-year-old man who had schizophrenia and obvious evidence of TD, with dyskinesia in facial muscles, extremities, and even his trunk. The best option I could offer at the time was to remove one of the two SGAs he was on. His father (and legal guardian) adamantly refused any change in medications, because that was the only regimen that had ever kept his son out of the hospital. In January 2017, when excitement began to build about two new medications poised to become the first FDA-approved treatments for TD, my patient’s father tragically passed away from sudden cardiac death. Throwing myself into TD research was one way to overcome the sense of powerlessness I felt from my inability to help him and his mother with their grief.
My situation was analogous to the decades of powerlessness clinicians had felt in trying to treat TD with various off-label medications and supplements, none of which had ever merited more than a Level B recommendation by the American Academy of Neurology. The two investigational medications represented a great opportunity for the field, and I wanted to bring that hope to my patient and his family in their difficult time. I offered that if the first of the two VMAT2 inhibitors was approved, we would try it. I was surprised how deeply invested they were in this offer. To them it was more than simply a treatment for just another condition he had. It had become the fulfillment of a promise I wasn’t able to make to his father at that first appointment— that I could improve his TD without risking his hard-won psychiatric stability.
It had become that very beacon of hope I’d tried to ignite for him. When he was finally able to take the medication, it reduced his movements to what would be almost unnoticeable to the average person. Just a month after starting treatment, the young man who couldn’t walk a straight line down the hallway when I met him, became able to remain nearly as still as I did in session.
Over the next few months, I worked to make myself into a “DIY expert” on TD by reading Neurology journals and movement disorder textbooks. Armed with this knowledge, I found that I did have a number of other patients who had mild to moderate TD, to which I had simply been blind. I had inadvertently set my bar for diagnosing TD at the level of the severe, state hospital-level cases. The dyskinetic movements I began to notice might have been easy to miss in a short medication management appointment, but they were often the cause of significant functional impairments that I had totally overlooked before I made the effort to ask. For instance, a 67-year-old woman stopped singing in her church choir because of embarrassment over her facial movements, and a 59-year-old had to swallow her pride and ask coworkers to put on her earrings and necklaces because her hands had too many dyskinetic movements to make the precise movements.
Everyone in clinical practice today trained in an era in which there was effectively nothing we could do to address Tardive Dyskinesia, so we didn’t have much incentive to look for it. Our skills for diagnosing it withered, and many newer clinicians never learned them in the first place. I actually did have the opportunity to train under a renowned TD expert, so I really had no excuse, but I let myself become complicit in “la belle indifference” that seems to have overtaken the field since the advent of the SGAs. That era is over. Today, safe and effective VMAT2 inhibitors are available, and we need to collectively wake up and find every patient with TD in our practices. Now I’ve made assessing for TD a part of my standard mental status examination for every patient on any antipsychotic, during every visit.