From Developing Symptoms to Getting a Diagnosis: Patient Perspective on Tardive Dyskinesia

Key Takeaways

• Tardive dyskinesia (TD) can be extremely mentally distressing for patients
• Patients receiving antipsychotics, regardless of psychiatric diagnosis/indication, are at risk for developing TD
• Healthcare professionals need more education on TD to efficiently and accurately identify it in their patients

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It took me approximately 9 months from onset of symptoms to finally receive a diagnosis of tardive dyskinesia.

I did, and do, suffer from depression issues. After some time on an antipsychotic for my depression, I started developing involuntary movements and a stutter. At the time, I didn’t have any health insurance, so I went to my state behavioral health facility where I was told it would be 3-5 days until I could get in to see somebody. This was so visibly distressing to me that the woman at the front desk decided to take me directly to a nurse, who then immediately got the facility’s medical director to come take a look. They did not diagnose me, but instead gave me a referral to another healthcare professional and insisted that I should not drive home, as they thought I was likely to have a seizure. I succumbed to this insistence and was ambulanced to a local hospital, where again, they did not give me a diagnosis but instead another referral. As I was leaving the emergency department, I did actually have a seizure, but this didn’t really change anything in my care plan, which was just to see the next provider to whom I had been referred.

I was referred to general practitioners and specialists, provider after provider and specialist after specialist. There was still no accurate diagnosis, and the time is a bit of a blur, but I remember I kept being given new prescriptions and dose increases. I do remember specifically that one of the pharmacotherapies that was frequently increased was gabapentin.

My involuntary movements, my stuttering, and my balance got so bad that I had to begin bringing one of my sisters to appointments with me so she could “translate” my stuttering to the providers. At one point, my balance issues caused me to fall and fracture my shoulder. Again and again, I was passed from provider to provider—with weeks to months in between appointments. Eventually, my symptoms got so severe that I was unable to drive.

I don’t recall how I was connected with my current providers, but I do know that’s when I first got some relief and answers. I was diagnosed with TD. They told me it was a movement disorder and a neurologic disorder. It finally had a name, and this was actually comforting to me because up until this point, I had just felt freakish. Then they changed my medication, including taking me off of the gabapentin, which actually had been aggravating my symptoms.

I was so relieved to have a diagnosis that I probably didn’t ask the proper questions. I didn’t think to ask how common TD was, if there were any medications specifically for TD, or whether these issues would go away. But after knowing what I had and taking some time to process it, I did a lot of reading and research on it. I had never heard of it before, nor had it come up in any of my previous searches when I was trying to figure out my diagnosis in the first place. So again, it was really helpful and important that I finally had a diagnosis and more of a direction to move forward with.

Regarding the patient–provider relationship, to say it was excellent would be putting it mildly. My providers were just so genuine and sincere and interested, and they took so much time with me. We did a lot of neurologic tests and exercises, like bringing my finger to my nose and repeating a list of 5 words after a distractor activity. He also scheduled me for some comprehensive movement testing, which was conducted by somebody else. It was very extensive and the results were really interesting. One time, he brought in a videographer to videotape me so we could assess my symptoms.

Unfortunately, I ended up having a bad reaction to the medication he prescribed me for the TD. It helped for a brief time, but then I developed severe muscle freezes and leg movements similar to restless legs. I ended up in the hospital. Once off the medication, those symptoms improved, although I do still have involuntary leg movements.

At this point, my involuntary movements and stuttering have greatly improved, but I’m still left with balance issues and a persistent involuntary movement in my jaw. I’m very self-conscious about my jaw movements and it does produce a lot of anxiety if I’m going to a social event, which ironically makes the movements worse. 

What I hope that providers and caregivers can gain from reading about my experience is the importance of an accurate diagnosis. For me, this was truly a blessing. I had some family and friends who thought I was faking or exaggerating my symptoms, that I was using illicit drugs, or that I had a mental health problem. Being able to say “I have tardive dyskinesia” is incredibly helpful and relieving—it’s not cerebral palsy, I’mnot using illicit drugs, I’m not faking it, and it’s not contagious. And of course, to reach an accurate diagnosis, healthcare providers need education on TD so that they can identify it more quickly and treat it appropriately. Among the multiple providers I saw, a few of them were affiliated with pretty prominent hospitals in the area and still did not have answers for me. I’m very grateful to my current healthcare providers for their initial diagnosis and continued care, but it should not have taken 9 months for me to reach my diagnosis, and more education on TD can help prevent that for other patients.

Your Thoughts?

Accurate diagnosis is so important to patient mentality and outcomes. Listen to a patient interview to broaden your understanding of the effect TD has on everyday life. What education do you think can help providers identify and treat patients with TD? Answer the poll below and provide your input in the comments section.