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According to the National Institute of Mental Health, one in every 25 American adults suffers from a serious mental illness that substantially interferes with one or more of their major life activities. Since the early 1950s, treatments with antipsychotic medications have afforded patients the ability to live with improved quality of life and function better in society. Due to their effectiveness, many of these cornerstone medications are still in use today; however, long-term care sometimes comes with a series of risks. Join us for this very special program as we take an in-depth look at a movement disorder called Tardive Dyskinesia, otherwise referred to as TD. I'm Ereka Vetrini, Access Health starts now.
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My name is Raven. I'm 46 years old. I live in Arlington, Virginia, and I have tardive dyskinesia. My journey began the last year in high school. I made a suicide attempt when I was 17 years old. You know, I didn't really have words for what I was feeling then. I didn't know anything about depression. I had no idea that I could ever get any better. I was in the hospital for 30 days, and I was diagnosed at that time with major depression instead of bipolar disorder, which is my diagnosis now. I've been on so many different, different medications over the course of the last 25 years, now 26 years, and nothing was, really seemed to work long term.
When I started having movements, I had no clue whatsoever. Other people would notice them and ask me, "Why are you nervous?" or "Why are you fidgeting so much?" I'm like, "What do you mean?" And I'm just sitting here, or I'm just standing here, not doing anything. So I had no idea what they were seeing.
I noticed that Raven was having some movements, and they were very unusual, and he didn't seem to notice himself. When my mom first noticed it, she would be like, "Stop fidgeting," or she'd just walk over and like, place her hand on my leg to keep it from, to remind me to keep it her from moving, which was really frustrating 'cause I'm like, you know, I, I didn't realize it was happening, and I'm like, well, I can't stop it from moving, and I didn't know why.
Long-term use of antipsychotic medications entails a difficult trade-off between the risk of Tardive Dyskinesia or benefits of alleviating psychotic symptoms. Dr. Henry Nasrallah is a renowned neuro psychiatrist, educator, and researcher with expertise in schizophrenia and related disorders. He explains TD for us.
We refer to it as TD for short. It's this late onset movement disorder that affects multiple parts of the body, but most frequently the face. So it is facial expression and grimacing and moving, eye blinking, mouth moving, and tongue darting in and out and continuously moving. It is very attention provoking for people looking at the patient because they look like they are really inappropriately moving their face, and and that can be extremely embarrassing for the patient. The side effects of Tardive dyskinesia is potentially irreversible in most cases, and it is a consequence of long-term treatment with antipsychotics. Sometimes not even that long, sometimes a few months can produce it in some patients who are at risk.
The most prominent scientific explanations for TD is what we call dopamine receptors super sensitivity. Now, dopamine is a neurotransmitter in the brain which is involved in schizophrenia. Every single antipsychotic ever discovered blocks dopamine receptors. Turns out that if you block dopamine receptors for a long time, the brain reacts, and it reacts by manufacturing more dopamine receptors. So now patients who are taking antipsychotics that are blocking the dopamine receptors that they, that were overactive in the first place, with time they start making more dopamine receptors, and that was we call super sensitivity.
There are certain groups that are more at risk than others. Example of that would be women more than men, African American, more than Caucasians, people who are taking high doses compared to those who are taking low doses, and people are taking medications not for schizophrenia, not for psychiatric condition, but there are medications that block dopamine receptors the same way that antipsychotics do, and it's used in internal medicine for gastrointestinal abnormalities like nausea, vomiting, and gastroparesis. Many of them would avoid going out because of embarrassment because the face is moving all the time, and people looking at them all the time. It's so unfair to the patient that there was no treatment for them.
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Part of the way I got diagnosed with tardive dyskinesia, is my mom noticed all these symptoms in me, and so she came to a doctor's. She was like, "I'm coming to your next doctor's appointment." She didn't ask, she's just like, "This is what's happening." So my mom and dad came, which was life-changing because they got me to switch doctors to someone who was more aware of the condition. They were a great support system because they came with me to see the neurologist who who was working on the study, and because he was so familiar with TD, he recognized the tardive dyskinesia and he's like, "I think you might have this."
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Welcome back to this special edition of Access Health. Today, we're getting a closer look at tardive dyskinesia, a potentially life-altering movement disorder. Dr. Karen Elta Anderson is a neuro-psychiatrist. She explains the diagnostic process for us.
Many of the people that I see who have tardive dyskinesia really don't put a name on it. They come into clinic because they have an abnormal movement. Maybe somebody in church has told them they look like they're chewing gum during the service. Maybe where they work, people ask them why they're always moving around and bouncing around. Maybe someone makes fun of them because their tongue goes in and out of their mouth all the time. They have no idea what this is. They don't even know what caused it. And one of the first things I do is to help them put a name on it, which is tardive dyskinesia. I think the biggest clinical challenge in addressing TD is getting patients in the door to see a doctor for tardive dyskinesia. It's really important to educate and monitor for Tardive Dyskenisia.
I work as a bartender in the hospitality industry, so making people, other people comfortable is part of the job. And my movements had gotten to the point where people would ask me if I was on drugs because my body was always moving. He was at a point where he couldn't keep a job. A job might last a week, two weeks, a month, maybe. The TD was so bad. Also, my personal life, it got to the point where I couldn't wear button-down shirts because I couldn't navigate the, I couldn't navigate the buttons. My handwriting became illegible because I couldn't control the pen because of the shaking. I couldn't eat with a knife or fork. I couldn't feed myself. I started just making off all these, I wasn't aware that I was making all these changes to my life, but eventually I noticed that I had just stopped using eating food with a knife and a fork, and I would only buy sandwiches and stuff that I could eat with my hands. I started wearing all t-shirts when I used to wear but down shirts, pretty much all the time.
It's important every few months to do some kind of a monitoring exam, whether you want to use the Abnormal Involuntary Movement Scale, which is the AIMS, or if you want to monitor them with an exam of your own that's pretty simple and straightforward. It's just important to keep track of someone to see if they're developing abnormal movements and really important to catch them early on. I think the more information we get out there about tardive dyskinesia, the better people are informed so they can go to their doctors and let them know if they're starting to have these symptoms, and certainly if they're causing any kind of pain in the joints from the movements or social stigma or problems at work, it's important for patients to know what's doing this. At work, it's really problematic because, you know, going to pour drinks and I drop bottles on the floor sometimes. Just recently, I was up in an 8-foot loft at work, and my arm gave out, and I fell off chest first until wooden stool 8 feet and ended up in the emergency room. And that's how another reason that I knew that I really needed to get in to see the doctor again. I'm like, I'm noticing the symptoms more, they seemed to be getting worse.
Since a lot of these antipsychotic medications are now prescribed by nurse practitioners, internal medicine docs, general practitioners, and other community physicians, it's important for them to know about tardive dyskinesia and to recognize the signs and symptoms early on. So if someone's taking dopamine blocking medications, I'll do a brief exam, and really, it's not very detailed, every six months or so, to check to see if they're having abnormal movements. I'll look at the area around their mouth to see if they're having mouth movements. I'll look at their tongue to see if their tongue has any abnormal movements. I'll look at their fingers. I'll have them take their shoes off and look at their feet. I'll have them walk up and down the hall and see if there's any evidence of abnormal movements in their hands and feet when they're walking. And then I'll watch as they're sitting in a chair that doesn't have any arms to see if they're swaying or moving in a way that suggests they're having abnormal movements. If a patient comes to me and they already have abnormal movements, I'll do a similar exam to that so that I know where we're starting out, how much symptom they have from the abnormal movements, and then we can monitor to see if we're improving things for them in terms of the tardive dyskinesia.
TD goes undetected in a lot of the clinical setting. These patients are seeing, I think this is again because it's so hard for people to make the connection between a drug that you take to treat a mental illness and something that causes abnormal movements in the body. If you go to your doctor with an abnormal movement, it may be that your doctor is not a specialist in movement disorders. They may want you to see a neurologist or another physician that has more experience, particularly if it's a more complicated movement, if it's something you've had for a while, or if you have more than one movement. Sometimes it can be really difficult to tease out whether it's tardive dyskinesia, whether it's the onset of something called Parkinson's Disease, or whether it's ticks in a condition called Tourette's Syndrome. This is a reason that your doctor may refer you to see a specialist for assessment of your tardive dyskinesia.
The doctor said that there was a slight chance that the medication I was going to be put on would cause these uncontrollable movements, so she didn't want to keep me on them for a long time. But I ended up being on them for a long time anyway. But as a result of being on those antipsychotic medications and the certain antidepressants, the TD built up over time.
One of the really important challenges we face is that the abnormal movements are problematic, they interfere with people's daily lives, but many people need to be on these dopamine blocking drugs. And the unfortunate thing is that you cannot stop the medications. The patients have to stay on the antipsychotics to control their schizophrenia or to control their bipolar symptoms. So it's a catch-22. Keep on with the medication that is causing the tardive dyskinesia is gonna get worse with them, but if you stop them, then they get psychotic again. And so it is really a no-win situation for those patients. It's really important not to go off psychiatric medication abruptly or suddenly because you're concerned about abnormal movements. In fact, in some people, that actually makes tardive dyskinesia worse.
While there is no cure for tardive dyskinesia, efforts to improve the lives of patients never stop. That when we return. Stay with us.
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Welcome back. Physicians treating mental illness have made great progress in the current era of psychopharmacology with medication and therapies helping patients manage their symptoms. It's just really important that people see their doctor if either they notice what's going on with their body with the movements and they're really making them anxious, or if other people start commenting on the movements, even though you're not aware of it, it's important that you go to your doctor and find out what's going on. Especially if you have a history like mine where you've been on so many different medications.
I'm so proud of how he's dealing with it. The whole thing, just from the very beginning. He's strong, he's tough. And I think he's got a bright future ahead of him. So at this point in time, TD should remain on the radar screen on every psychiatrist who are using antipsychotics, educating the patient about it, engaging the patient to tell us about the earliest signs and symptoms they see, in addition to the caregivers and the family members can be another important collateral source of information. But the important thing is we have hope. Hope is so important in medicine.
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This is the show all [MUSIC] [Music] In managing tardive dyskenisia, just like any other condition. Its important to have a good line of communication with your doctor. I really recommend that they exercise because I feel like if they are healthier and in a better mental state, it helps to kind of reduce the tardive symptoms. It wont take them away completely, but its really part of managing the symptoms. I also recommend that they get a lot of sleep. And I help them to understand that tardive dyskenia symptoms are really variable. So if they are sleep deprived or under more stress, they are much more likely to have the TD symptoms come out.
From my perspective now, things look much better. Things are better because now I'm able to work out and get back in shape, so that lessens the depression because I start to feel like I'm looking like myself again. The fact that my parents approached me about it and made me aware of what was going on was pivotal. They insisted on coming to the doctor with me. Which was life changing because they got me to switch doctors to someone who was more aware of the condition. They've just been with me every step of the way. It was great to know where the symptoms came from. It was important to me because it let me know there's nothing wrong with me. I can feel better about myself because I don't feel as responsible for not being able to control my body, which is something pretty basic most people for granted. I do feel more in control of my life. I don't feel like a victim.
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Special thanks to Dr. Henry Nasrallah and Dr. Anderson for helping us understand more about tardive dyskinesia. I also want to thank Raven for sharing his personal story of courage with us. We wish him all the best. For more information and resources on tardive dyskinesia, visit tardive impact dot com, and of course, you can log on to our website at access health TV. We'll see you next time.
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