Nebraska resident Cariena Birchard has lost count of the number of medications she’s tried since being diagnosed with bipolar disorder and anxiety disorder in 1994. A type of mood disorder, bipolar disorder causes a person to cycle between normal moods, depression, and periods of mania marked by feelings of euphoria and boundless energy. Cariena is one of more than 3 million Americans living with bipolar disorder. 

She’s also prone to anxiety, another type of mental disorder that brings on intense feelings of distress and fear. For Cariena, high levels of anxiety often lead to panic attacks. These sudden feelings of fear send her heart racing and struggling to breathe. Over time, Cariena developed agoraphobia, an anxiety disorder that made her afraid to go anyplace unfamiliar that didn’t feel “safe.” To avoid having a panic attack, she simply stayed home.

Tardive dyskinesia: An unexpected medication side effect

The medications her doctors prescribed kept these disorders in check — for a while. “I have a long history of medications working for a year or so, then suddenly stop working,” Cariena shared in a June 2021 article with the Valley of the Sun (Phoenix, Arizona) chapter of the National Alliance on Mental Illness (NAMI).

But even when the medicines helped, Cariena dealt with a long list of side effects. Some drugs made her too nauseous to eat, while others caused weight gain. Certain medicines kept her up all night with insomnia, while others made her too exhausted to do anything. And then there were the surprising side effects like leaking milk from her breasts, restless leg syndrome, and excruciating migraines.

Cariena coped with the side effects because she knew the medications helped. But around 2005, her loved ones and friends noticed she was making facial twitches and clicking her tongue. Cariena noticed changes in her speech, like her voice wavering. And she found it nearly impossible to not move. “I found myself much closer to the manic side of my Bipolar Disorder than I ever wanted to be just because my brain and body could not be still,” she told NAMI. “I was unable to be comfortable in social situations because I couldn’t control my body.”

Cariena’s doctor had recently switched her to a new medicine. Although she’d only been taking the new drug for a couple of months, she had developed a medication side effect known as tardive dyskinesia (TD). Approximately 1 in 4 people who take antipsychotic medications develop this movement disorder. Experts believe an oversensitivity to dopamine, a neurotransmitter (chemical) that carries messages between nerve cells, the brain, and the body, causes tardive dyskinesia. 

The involuntary facial and body movements Cariena experienced were symptoms of tardive dyskinesia. “I was fortunate that my doctor could pinpoint TD as the cause of my symptoms quickly and make changes to my treatment plan,” she told NAMI. Her treatments involved stopping the medication that caused the side effect and taking a different medication that helps people with Parkinson’s disease, a different movement disorder. Still, it took more than a year for the tardive dyskinesia symptoms to completely go away.

A fast education in tardive dyskinesia

Several years later, when Cariena started a new medication, she knew immediately that she was once again experiencing tardive dyskinesia. After her first episode with TD, Cariena had connected with NAMI and the Depression and Bipolar Support Alliance (DBSA). She had armed herself with the facts about tardive dyskinesia. “I shifted into “research mode” and started trying to learn as much as I possibly could about this disorder,” she told NAMI.

By now, she knew that it could take a year or more for the symptoms to go away. And there was also a possibility that she could be living with tardive dyskinesia forever. She knew her facial twitches and body movements made people uncomfortable, so she decided to speak candidly about her condition. “I tended to be open about it, sort of as a preemptive strike,” she shared in an interview published in Health Monitor’s Guide to Living with Tardive Dyskinesia. “That made it a bit less embarrassing.”

While waiting (and hoping) for the symptoms to ease, Cariena looked for ways to cope with the disorder. “We went through two different medications and experimented with various stress relief exercises to find the combination that worked for me,” she told the Health Monitor. Cariena found that yoga provided the most relief. “It helps massively with the aches and pains caused by the constant constriction of my muscles,” she said in the Health Monitor article. “Yoga also gave me a way to focus on something else for a little while instead of always having TD at the forefront of my brain.”

Helping others with tardive dyskinesia

In time, the symptoms let up enough for Cariena to return to her job as a legal assistant. “I thought I was “stuck” and, although it wasn’t as fast as I was hoping, relief DID come and I have since been able to return to work and a relatively normal lifestyle,” she told NAMI. 

Cariena continues to stay current on the latest tardive dyskinesia research. Through NAMI and the DBSA, she serves as a peer mentor for others facing a tardive dyskinesia diagnosis. “Experiencing medication side effects, no matter how common they are, can be a very isolating feeling,” she told NAMI.

One of the things she tells others is to not be afraid to share their struggles with the disorder with their doctors. “It is vital that we open up to our doctors about what symptoms and side effects — good or bad — we may be experiencing,” she told the Health Monitor.

She also encourages people to learn as much as they can about the disorder to make it less scary, and to connect with others either in-person or virtually who understand the challenges of living with TD. If you or someone you love has tardive dyskinesia, you can find virtual support through the Inspire Movement Disorders Support Community. As she told NAMI: “…There is hope and it does get better.” 

Sources

• Shapouri B. We’re thriving even with TD. Health Monitor’s Guide to Living with Tardive Dyskinesia. Winter 2020.

• Bipolar disorder. Mental Health America. 

• Tardive dyskinesia. National Alliance on Mental Illness. March 2019.

• Tardive dyskinesia: A personal story about self-advocacy. National Alliance of Mental Illness Valley of the Sun. June 2021.

Disclaimer

This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.