How To Live Your Best Life With Tardive Dyskinesia

Everybody’s experience of tardive dyskinesia (TD) — a movement disorder you can develop while taking medications called dopamine antagonists — looks a little different. Part of that has to do with your underlying medical condition and whether you’re still taking the antipsychotic (neuroleptics), antidepressant, antihypertensive, antihistamine or anti-nausea drug. Some people can stop taking or reduce the dosage of the medication causing their TD. Others can’t do so safely.

To make things more complicated, there’s no way to know for sure whether stopping or reducing your medication will affect your TD. And the involuntary movements associated with the condition can be temporary or permanent.

We now have medications called VMAT inhibitors that treat tardive dyskinesia. But we don’t yet have a cure. The good news: There are some tried and true symptom management techniques that can make navigating your daily life with TD a little easier.

7 strategies for living with tardive dyskinesia

Neurologist Hubert Fernandez, MD, shares seven tips to help you manage TD.

1. Build your care team and support system

Movement disorders like TD have many different facets, so it’s important that your healthcare providers work together to understand and manage your condition. Depending on the type and severity of your symptoms, your care team may include a neurologist, physical therapist, dietitian, psychologist and more. If you don’t have a care team in place yet, check out the International Parkinson and Movement Disorder Society’s free Specialist Finder tool.

In addition to building your care team, it’s important to develop a strong support system.

Tardive dyskinesia isn’t a rare condition. Estimates suggest over 500,000 people in the U.S. alone are living with the disorder. There are lots of ways to connect with and learn from people who deal with TD every day. From adaptive equipment recommendations to side-splitting anecdotes, your peers can offer both practical information and the depth of understanding that you need in challenging moments.

For starters, check out the National Organization for Tardive Dyskinesia. Their website includes a virtual support group, educational materials, information about clinical trials and more. You can also connect with other members of the TD community on online forums and social media.

2. Keep detailed records

Whether you’re getting diagnosed, starting treatment or trying to better understand and manage your symptoms, keeping accurate records is key. It can help you identify triggers, track treatment progress and — for some people — uncover sensory tricks.

3. Learn your sensory tricks

Dr. Fernandez explains that tardive dyskinesia has several subtypes, one of which is tardive dystonia. Dystonia causes muscles that usually complement each other to fight instead. As a result, a body part will twist or adopt an abnormal posture. People living with tardive dystonia sometimes discover they can do things to reduce or correct those muscle contractions.

Some sensory tricks are practical and intuitive. Examples include sucking on a straw or toothpick to reduce movement of the tongue, or rubbing your eyebrow to correct dystonia of the eyelid. Other tricks are a bit more unexpected.

“Sometimes, you might see people with TD doing something a little strange or wearing something atypical, like wearing sunglasses inside or wearing a turtleneck when it’s not really that cold,” Dr. Fernandez shares. “They’re doing that because they’re using that action or clothing accessory as a sensory trick.” Keeping accurate records of your daily activities and symptoms can help you spot patterns and identify new sensory tricks.

Find the idea of maintaining a journal or spreadsheet daunting? The National Organization for Tardive Dyskinesia has a TD symptom tracker app available for a small fee.

4. Rely on routine and cultivate comfort

Movement disorders tend to worsen under stress. TD is no exception.

“Any stress — physical stress, medical or surgical stress, psychological stress — can worsen tardive dyskinesia” Dr. Fernandez says. “Abnormal involuntary movements are reactive and very sensitive to the external environment. If you’re experiencing acute stress — like, if all eyes are on you during a presentation — whatever little twitch you have is likely to be 10 times worse.”

We don’t live in a perfect world. And there’s only so much about your environment you can control. But Dr. Fernandez advises establishing routines to the best of your ability. Examples include going to bed and waking up at the same time every day, keeping regular work hours, and structuring tasks like cleaning and errands. A little predictability can go a long way.

“You are most comfortable when you are in a routine,” he continues. “Making your environment as controlled as possible creates a relaxed setting. Being relaxed doesn’t mean your tardive dyskinesia isn’t going to show up. But at least you’re not adding fuel to the fire.”

5. Stay organized and plan ahead

Establishing a routine isn’t enough. Staying organized and planning ahead is also key.

Let’s say you’re running late for school. The stress of realizing class already started can easily kick your symptoms into overdrive. And those involuntary movements? They can slow you down even more … which ups your anxiety still further. It’s a vicious cycle.

That’s why Dr. Fernandez’s motto is “prepare, prepare, prepare!”

“Schedule yourself so you can get places early,” he advises. “That way you can take your time and not worry that you might be doing things more slowly because of your tardive dyskinesia. You don’t want to put undue stress on yourself.”

In addition to careful scheduling, you can anticipate triggers ahead of time and plan for them. If your TD affects your handwriting, consider requesting permission to record important meetings. If you’re travelling to see a sick relative, door-to-door transportation may be better than renting a car.

6. Develop healthy habits

Here’s the thing about routines: They’re only as good as their components. When you develop your routine, make sure that you’re building in plenty of space for self-care. That means:

1. Getting plenty of sleep. Did you know that TD movements stop completely once you fall asleep? It’s true! Sleep is a vital renewal process that allows the brain and body to rest. And few things kick stress into overdrive quite like a sleepless night. Practice proper sleep hygiene to help ensure you get the rest you need. And if you still aren’t getting enough shut eye, consider seeing a sleep medicine specialist.
2. Being physically active. Exercise is a natural stress buster that requires energy and focus. As a result, many people with TD find regular physical activity helps them manage their symptoms. Talk to your care team before starting a new exercise regimen. Depending on the kinds of involuntary movement you experience, they may recommend avoiding or adapting certain activities to make them safer.
3. Eating an appropriate diet. What you eat matters in two distinct ways.
   • Several medications linked to TD are prescribed to address gastrointestinal issues like nausea, gastroparesis and gastroesophageal reflux disorder (GERD). Diet can be an important part of managing these conditions.
   • Some people with tardive dyskinesia experience difficulty swallowing (dysphagia). Depending on the cause of your TD and the severity of your symptoms, you may benefit from working with a registered dietitian. They can help you ensure you get the nutrition you need safely.
4. Practicing mindfulness. When we’re focused on the present moment, we aren’t ruminating on our past or worrying about our future. “Mindfulness” is the umbrella term we use to describe that focus on the here and now. From gratitude journaling and breathwork to walking meditation and earthing, there’s a wide range of activities that fit the bill. Choose a few that speak to you and see how they impact your stress levels over time.
5. Maintaining a social life. Social isolation is a common side effect of tardive dyskinesia and can worsen any underlying mental health issues you may have. As best you can, surround yourself with supportive people and adapt your social scene to fit your needs. Karaoke in front of a room full of strangers may be asking too much of yourself. But game night at home with your roommates and a few close friends? Bring it on!

7. Advocate for yourself

Tardive dyskinesia is an often unexpected (and always unwelcome) speedbump in your treatment journey with another medical condition. And while the science is progressing, there are still many questions left unanswered.

It’s not clear why some people experience TD and some don’t. It’s not clear why it resolves for some people but not others. And because the symptoms vary so much, Dr. Fernandez notes that it’s often either misdiagnosed, ignored or written off as “just a part of life.”

“Sure, it may come with the territory of the medication you’re taking, but that doesn’t mean you can’t do anything about it,” he says. “It’s getting better, but some providers still don’t know about this side effect or know that there are pharmacologic treatments available. There’s an awareness gap out there. And sometimes, it’s up to the patient to raise the topic with their doctors and request a neurology referral.”

Feeling like you can’t control your own body can be distressing. But knowledge is power. And you can use yours to seek out the support you need and build the life you want.