What Is It Like to Have Tardive Dyskinesia?
Key takeaways:
Tardive dyskinesia (TD) is a movement disorder.
It causes involuntary movements of the face and body that can be difficult to control, such as twitching or jerking of the mouth, tongue, or limbs.
While there’s no cure for TD, people find individual solutions — such as assistive devices or tools to help with eating — or take medications to ease movements.
Rachel Star Withers has a response ready when people near her ask if she’s OK as soon as they notice her shaky arms or her tongue lolling from side to side in her mouth.
“It looks like I’m trying to wipe something off of my cheek with my tongue,” says Rachel, a 37-year-old freelance video producer and podcaster. “I tend to say, ‘Oh yeah, it’s just something I do,’ and I let the conversation end there.”
“Most people aren’t going to inquire any more than that,” she says, “and if I tell them I have tardive dyskinesia (TD), no one has a clue what that is anyway. It’s an approach that seems to work.”
More than 15 years ago, Rachel was diagnosed with TD, a movement disorder that is unique among medical diagnoses because it is caused by medications that are prescribed for other conditions.
TD is linked to medications for psychiatric illnesses and nausea medications. The medications include some antidepressants, anti-anxiety, and antipsychotic medications; stimulants; and mood stabilizers.
Rachel was diagnosed with schizophrenia at age 17 and was prescribed antipsychotic medications at the time. Today, she leverages her media persona to educate others about both TD and mental illness. Her YouTube channel, for instance, hosts informative videos about her individual TD symptoms and general info about schizophrenia.
She’s used to triggers — and stares
Rachel’s symptoms begin emerging about 5 years after she began taking medications for schizophrenia.
“In my early 20s, I began to realize that my tongue was moving around in my mouth like a snake,” says Rachel, who lives in Rock Hill, South Carolina. “Then I started to shake and have tremors, usually in my hands, to the point where I’d have trouble using a knife or cutting my food.”
She knows that her symptoms tend to worsen when she’s engaged in activities that require intense concentration.
“It tends to come out when I’m focusing on something. For instance, when I’m doing my exercise class and really paying attention to my workout, my tongue tends to hang out of my mouth,” she explains. “I usually don’t notice it unless I see myself in the mirror or someone says something to me.”
She used to wear a mouthguard during boxing workouts, “but my tongue would involuntarily flip it out of my mouth, and I’d be standing there wondering, ‘How did that happen?’”
Common medications linked to TD, listed by generic name and brand name, include:
Although avoiding dopamine-blocking medications is ideal for preventing tardive dyskinesia, it may not be an option for everyone.
Rachel now knows she could have lowered her risk by using the lowest dosage possible, taking the medication for the shortest time possible, and switching to a medication that was less likely to trigger tardive dyskinesia. But it’s too late for what-could-have-beens.
Assistive devices, honest conversations help
Rachel exercises, keeps track of her symptoms, and meets regularly with her psychiatrist. She’s found helpful tools that were developed primarily for people with other movement disorders.
“If you do a Google search for ‘assistance tools for TD,’ you won’t find a lot,” Rachel points out. “But you will find results for Parkinson’s disease and devices for people as they age. So, I’ve been using a lot of those tools with good results.
They include thick-handled eating utensils that are easier to grip and less likely to slip out of a shaking hand, foam grippers for anything with a handle, and thick, easy-to-hold pens and pencils.
She has no trouble sharing her condition with other people.
“Honestly, TD has never bothered me all that much,” she says. “It seems to bother the people around me more, like if I start shaking while I’m eating. I think that in our heads, we make it something that’s way worse than what it really is.”
“I always tell other people, ‘Honestly, it’s not that big of a deal.’ And when people ask me if I’m OK, I’ll just say something like, ‘Yeah, I shake every once in a while’ and shrug it off. It sucks to have, but it’s definitely something I can live with.”
Her advice: Have regular doctor-patient check-ins
Over time, Rachel has become more aware of what triggers her symptoms. And so far, she has not been willing to take either of two drugs approved to treat TD — Ingrezza (valbenazine) and Austedo (deutetrabenazine).
“I developed TD as a side effect, and I don’t want to go on another medication that might have other side effects,” she explains. “If it gets to the point where I can’t write or can’t feed myself, then I would definitely go on medication. I’m not totally against it. But I just don’t feel I’m at a point in my life where I need anything like that.”
She says the most important aspect of her treatment is an ongoing conversation with her psychiatrist about symptoms, especially if new ones develop.
“A really big piece of advice to others with TD is to bring up your symptoms with your doctor,” Rachel suggests. “Unfortunately, some doctors prescribe the medications and then don’t follow up on them. There’s apparently a TD scale where doctors are technically supposed to check you once a year for shaking and other symptoms.”
Two such tools include the Abnormal Involuntary Movement Scale (AIMS) and the Extrapyramidal Symptom Rating Scale (ESRS) — commonly used scales for assessing movement.
In Rachel’s experience, sometimes it’s up to the person with TD to educate providers about using it.
“I have never had a doctor assess me on the AIMS scale,” she says. “You never know unless you search for it on your own. So, make sure you keep the channels of communication open with your doctor.”
Why trust our experts?
