Mental Health Awareness Month: Tardive Dyskenesia

As if mental illness itself weren’t embarrassing and exhausting enough—and as if the spectrum of side effects from psych meds weren’t even more embarrassing and exhausting—along comes tardive dyskenesia. 

Aside from sounding like an antebellum flowering vine, tardive dyskenesia is also a range of involuntary, repetitive neuromuscular movements of the tongue, lips, face, torso and extremities that occur in people treated with long-term antipsychotics and other dopamine-receptor-blocking medications. If you’ve ever stood or sat near me for an extended period of time, you’ve no doubt seen the full compendium of symptoms: grimacing, lip chewing and pursing, heavy blinking, face touching (and I deserve seven gold medals for fighting back the compulsion to touch my face 75 times a minute in the Coronavirus Olympics), arm swinging, leg hitting, rocking, fidgeting, shaking, and—oddest of all—being on tiptoe whenever I’m sitting down. I continue to cringe every time I see video footage of me talking or singing with my lower jaw weirdly askew. My foot also pulses on the gas pedal when I drive, and a number of people have told me it almost makes them carsick when they ride with me.

I’m rather lucky in that my flailing and wiggling are more embarrassing than physically problematic, but about 20% of the population living with the disorder literally can’t function; it can prevent them from walking, eating and even breathing.

And as a point of clarification, these symptoms are the opposite of those from Parkinson’s Disease. People with Parkinson's have difficulty moving, whereas people with tardive dyskenesia have difficulty not moving.

Tardive dyskenesia symptoms can lessen, change or even go away over time after a person stops taking neuroleptic medications, though more often than not they’re permanent. My symptoms have noticeably changed over the last decade, but I’ve traded making alarming sucking sounds on my lips for making an entire room tremble from my violently shaking legs.

There are many medications that can be used to manage the symptoms to varying degrees. After five-plus years of needless misery, I successfully weaned myself off the anticonvulsant Gabapentin, which did or didn't work depending on the way the wind blew and the leg trembled. It also tended to make me drowsy and sometimes even confused, which makes me especially surprised that it’s used recreationally—under the totally lame street name Gabbies—for its supposed euphoric effects that I absolutely NEVER experienced.

One more thing: You may have seen the commercials for the prohibitively expensive tardive dyskenesia medications Ingrezza and Austedo … the commercials where they call tardive dyskenesia “TD” like it’s some cool brand of earphones or energy drink. Dear Ingrezza-makers Neurocrine Biosciences and Austedo-makers Teva Pharmaceuticals: I’ve had tardive dyskenesia for over a decade. I’ve been seeing psychiatrists and neurologists about it for over a decade. I’ve read everything I could read about it for over a decade. I’ve been on medications for it for over a decade. And NOBODY outside of medical publications and pharmacy websites calls it TD. STOP TRYING TO MAKE TD HAPPEN.