Transcription
Hi, everyone. In today's video, we are going to be discussing what exactly is tardive dyskinesia?
(bright cheerful music)
Hi, everyone, and welcome back to the Living Well With Schizophrenia Channel. If you're new here, my name is Lauren, and I make videos about what it's like to live with schizoaffective disorder or schizophrenia. And if you would like to see more videos like this one, please make sure to subscribe to our channel.
All right, so just a quick disclaimer before we get into the content of this video, that we were compensated by Med-IQ, which is an organization that provides continuing education for health care professionals such as doctors, pharmacists, nurses, really any health care professional, as well as NAMI Maryland. And they were given an educational grant by Teva Pharmaceuticals to carry out this awareness campaign about what tardive dyskinesia is. So I just wanted to quickly let you all know that even though this is a sponsored video from Med-IQ and NAMI Maryland, all thoughts and opinions in this video are my own.
I have personally experienced tardive dyskinesia as a result of the medication that I take for my schizoaffective disorder. And so it's something that we really believe in spreading awareness about, and it's something that we felt would be a really good fit for our channel.
All right, so in this video, I'm first going to be talking about what my experiences with tardive dyskinesia have been like. And then we're going to go into an interview with Dr. Citrome, who is a psychiatrist who specializes in tardive dyskinesia to kind of learn more about what exactly it is, what treatment methods are out there, and how treating it can impact daily life.
All right, so just to give a brief overview of what exactly tardive dyskinesia is. Essentially it is a side effect of certain dopamine-blocking or dopamine-effecting medications typically used to treat certain mental illnesses, such as major depression, bipolar, schizophrenia. Typically, they're antipsychotics, these act on dopamine, and it's basically facial tics or movements in the body that are involuntary and that are as a result of a side effect of the medication that they're taking for their mental illness.
So typically people don't really start to notice these symptoms cropping up on themselves until other people kind of point out that they're doing something a little off or that they have a facial tic or something like that, and this is kind of what happened with me. I didn't know that I was developing tardive dyskinesia until I started this YouTube channel, and people started pointing out tics or mannerisms or whatnot that I had in the comment section, and I started paying attention more to what I was doing. And it started out with people being really aggravated with me for smacking my lips in the videos. And I didn't know what they were talking about, but a lot of people kept saying it. And so I was like, "Okay, maybe, maybe that's something," but I didn't make the connection that that was tardive dyskinesia until later when I started to exhibit really fast and frequent blinking. And this is something that we get so many comments about. "Why is she blinking so much? "Is she sending us Morse code signals?" And just like poking fun at the fact that I was blinking a lot. And I started to get self-conscious of this, and I looked into it more, and this is actually a symptom of tardive dyskinesia. And so this is part of my facial tics that I have as a result of the medications that I'm taking for my schizoaffective disorder. And I also noticed that sometimes my mouth will jerk or a tic like this typically, and that's also another symptom of tardive dyskinesia.
So seeing myself on camera was really when I started to pay more attention to the fact that I was developing a fairly mild case of tardive dyskinesia, because it can be debilitating for some people. So I'm lucky that for me, it's pretty easy to manage, it's not too bad, and really it just makes me a little self-conscious, but it doesn't impact my life as immensely as it can impact others. And we'll hear more about how it can impact people from Dr. Citrome later on. I also started to develop kind of involuntary tics like this, or tremors in my hands, and this is also just kind of a continuation of tardive dyskinesia.
So when I really started to understand that this was probably tardive dyskinesia that I was developing, I went to my doctor and my psychiatrist to talk more about managing it or addressing that. And the first thing that he wanted to do was change my medications around, because it was very clear that the new medication that I was on was really ramping up the progression of my tardive dyskinesia. And so we switched back to an older medication that I had been on before, and that helped, but it still wasn't eliminating everything. So he prescribed me something else. It was a, I can't really say this word, an anticholinergic agent is the type of medication that he prescribed me. And it turns out that we'll learn more about this from Dr. Citrome, but this is not best practice anymore for treating tardive dyskinesia, and this is actually used to treat medication-induced Parkinson's, which is, it looks similar to tardive dyskinesia. And again, we'll learn more about this from Dr. Citrome later, but there is new evidence coming out about ways to treat tardive dyskinesia. And again, we will learn about that later on in this video.
Being able to treat my tardive dyskinesia really improved my quality of life, just mostly for the fact that I was less self-conscious about my blinking, about the tics, the facial tics, and less worried about my arm tics and whatnot. I still have them sometimes, and people still comment on my excessive blinking on YouTube and whatnot, but I think it's at a manageable point. And it's really important to be able to recognize when this is happening so that it doesn't progress to such a debilitating state as it can get to for some people.
All right, so hello, everyone. I'm here today with Dr. Leslie Citrome, who is a psychiatrist who specializes in tardive dyskinesia. And so in the first half of this video, I gave my experience about what tardive dyskinesia has been like for me, but hopefully you can give us a bit more information about what it's like for other people, and just what tardive dyskinesia entails. So thank you for being here, hi.
(chuckles) - Well, thank you very much for having me here to talk about something that's really dear to my heart, and that's drug-related movement disorders. And it happens as a consequence of many of the life-saving medicines that we prescribe daily for major illnesses. And antipsychotics are used a lot, right?
- Mm.
- They're used to treat schizophrenia, schizoaffective disorder, bipolar disorder, and also used adjunctively in major depressive disorder, so they're used quite a bit. Unfortunately, they can be associated with side effects, and there's a whole bunch of them. But one of them is related to abnormal movements, and there are basically two kinds. The kind that happens right away, so that's the Parkinsonian tremor, the rhythmic tremor like three to six cycles per second, as well as shuffling gait and rigidity. That usually happens right away. And then there's the delayed kind called tardive dyskinesia. Tardive: tardy, delayed. Dyskinesia: abnormal movement. So tardive dyskinesia is the onset after some period of time of abnormal movements that are quite different from drug-induced Parkinsonism. So here we have movements of the face. So I'm exaggerating a little bit, but I manage patients who do have those kinds of symptoms.
- Mm-hmm.
- As well of movements of the hands. Not that rhythmic tremor, but piano playing movements. And when I ask patients to remove their shoes and socks when I do a complete examination for motor movements, I see their toes wriggling where they shouldn't be. So the delayed onset of these arrhythmic jerky movements, that's tardive dyskinesia. And it's a consequence of medicines that otherwise are extraordinarily helpful to people.
- Right, thank you for that explanation. So you mentioned some of the symptoms of TD, but is there any other ones? So there's the piano-like movement hands, there's the facial tremors, is there anything else?
- Sure, there could be shoulder shrugging, and this goes unnoticed because we often assume that people are emphasizing their speech. So they may be moving their trunk in a way that we give it a pass, because it may be on purpose. But when you like turn the sound off and try to think about what these movements look like, that can be tardive dyskinesia as well. There could be movements, again, as I mentioned the toes, but the legs, or the trunk may be writhing or gyrating. And that can be like embarrassing and stigmatizing if one moves their trunk in that way. People are wondering, "What's with that person? "Why are they moving that way?" Or, typically, "Why are they moving their lips that way?" Or, "Are they chewing gum, they shouldn't be chewing gum. "We're in church, people shouldn't be chewing gum "or eating candy in church!" And yet there's nothing in their mouth.
- Right, so it's fairly likely that someone who is experiencing this is on antipsychotics, and so is already under the care of a psychiatrist or a doctor or something, but when is it important to seek out medical attention for TD?
- Well, if someone experiences an abnormal motor movement, whether it's any degree of tremor of any kind, bring it up to your doctor. They'll take a look and try to figure it out what kind of movement it is. Not all movements are the same, and the treatment for one type of movement problem is gonna be different than the treatment for another.
- Right.
- So the movements that occur right away when you start a medicine, or when you increase the dose of a medicine, that's more likely to be related to what we call drug-induced Parkinsonism.
- Okay.
- Which is actually pretty easily managed. You lower the dose of the antipsychotic, it goes away or it's much better. Or you switch the antipsychotic to something else that doesn't necessarily lead to as much drug-induced Parkinsonism. And it's relatively easy, and in some circumstances you may give another kind of medicine. So one medicine that's often used is called benztropine or Cogentin. Sometimes it's used prophylactically, like even before someone has an abnormal movement to try to prevent it from occurring. Now that may have been a good idea in the old days when all we had were the older antipsychotics that frequently caused these motor abnormalities. But now that we have the second generation, or atypical antipsychotics, we don't necessarily need benztropine anymore. And it's usually a good idea to minimize its use anyway for a number of reasons. But the bottom line is we have a lot of options with drug-induced Parkinsonism, and we can make it go away. If the movements are still there, or they emerged later in time, then it's not drug-induced Parkinsonism, and it may be tardive dyskinesia, which does not get better with benztropine or Cogentin, in fact, it could be worse.
- Right, so that is actually what I was given for my symptoms that I was presenting with, and it didn't help, and so assuming that it was likely TD instead. And so what is best practice for treating TD instead of medication-induced Parkinson's?
- Well, the most important thing is to make sure that an accurate diagnosis is made.
- Mm-hmm.
- And sometimes that's hard to do. And the bottom line though, is if you give benztropine or Cogentin and the movement isn't any better, it's likely not to be drug-induced Parkinsonism, because it works real well for that. And if it's not working, it means it's something else. And if the movements are actually worse, I think, "Well, maybe I'm dealing with tardive dyskinesia," and there, the treatments are different. We have, at least in the U.S., medicines called the VMAT2 inhibitors, or vesicular monoamine transporter type 2 inhibitors. Big long name, but what it does is decrease the amount of dopamine that hits the part of the brain that controls our movements. And by doing so, we can decrease the intensity and frequency of the dyskinesias, and it works well. And actually, if someone made a mistake and thought it was TD and gave one of these medicines and they get worse, well, then it wasn't TD. It was probably drug-induced Parkinsonism, 'cause these VMAT2 inhibitors actually can make drug-induced Parkinsonism worse. So the bottom line is the treatment for TD and drug-induced Parkinsonism are different, they're the opposite, and treatment for one can make the other worse.
- Right.
- So it's not the end of the world if someone's movements do get worse. It just means a mistake was made, an error was made in terms of the diagnosis, and you go back, and you switch the therapy to something that is in line with what the person actually has.
- So is it a little bit of a trial and error process in terms of treating it, or is there a specific set or a process or diagnostic criteria for TD?
- Well, sometimes it ends up trial and error when the movements are very confusing, or there are different kinds of movements at the same time. We'll get to that in just a moment. Differentiating between drug-induced Parkinsonism and the Parkinsonian tremor, that's three to six cycles per second, is very different from the jerky movements of the fingers here, or sometimes people call it piano playing. Wouldn't really be playing the piano, wouldn't make any sounds, but it looks similar like that. And jerky movements of the face, sticking out a tongue, that's classical tardive dyskinesia. But sometimes that tongue stays in the mouth, and the only time you see it moving is when you do an examination called the Abnormal Involuntary Movement Scale examination. And you ask someone to open their mouth, and then you take a look, and that tongue may move like this. And you wouldn't notice it otherwise, because it's not leaving the oral cavity, it's staying in the mouth. So it would go completely unnoticed unless you take a look and ask patients to open their mouth and keep it open while you take a look. So this is part of an examination called the AIMS, Abnormal Involuntary Movement Scale examination, which is very helpful in trying to figure out what the movements are, where they are, and how severe they are.
- Right, so is that kind of best practice then, that AIMS scale for diagnosing TD?
- Well, the AIMS actually isn't diagnostic. It just measures, it allows the clinician to look for the movements and assign a score to the severity of the movement. But the diagnosis of tardive dyskinesia means you have to have a history of being on an antipsychotic at some point in the past, if not currently.
- Okay.
- And they must have been on that medicine for at least a certain period of time. With older people, it doesn't take that long. So with older people, they can be on it for a shorter period of time and get TD. But for a younger person at least three months.
- Okay.
- And it has to be linked together. And if the movement, it's unclear, it's not characteristic, or that history isn't there, we look for another reason. And maybe a consultation with a neurologist might be helpful in those circumstances.
- Do you know statistics on how many people develop tardive dyskinesia who are on antipsychotics, or what the average length of time is for development of it while on antipsychotics?
- Well, that's a great question. It really varies a lot from person to person. Some people are very vulnerable to developing tardive dyskinesia, and can get it within a few months or a year of exposure. And others may be on antipsychotics for 30 years and never get tardive dyskinesia. When you look at how common it's found, so that's called prevalence, number of cases present today, we would say 30% of those receiving the older first generation antipsychotics have TD that's measurable. Now it may not be terrible TD, but an expert will detect it. One out of five or 20% on second generation antipsychotics have TD. And those numbers sound really high, and frankly, I think they are. But if we take a look at only the percentage of those who've only been on second generation antipsychotics, it's about 7%, it's much lower. But then you have to think a little bit here. Who are those folks only on second generation antipsychotics and have never been on the older medicines? Well, they've probably been diagnosed rather recently, like in the past 10 years, and they may not have been on the medicines long enough for tardive dyskinesia to manifest itself, so it's maybe just a matter of time. So ask me again in 20 years, if I'm still practicing regarding the prevalence amongst those who have only been taking second generation antipsychotics. Now this gets back to the risk factors. There are basically two critical risk factors for developing tardive dyskinesia. One is age. Anyone over the age of 50 is at increased risk of tardive dyskinesia. So if I started prescribing an antipsychotic for the very first time to let's say a 65-year-old, just for example, their risk of developing tardive dyskinesia is many fold higher than if I prescribe this to a 20-year-old. That's a fact. However, the other risk factor that is very important is how long you've been on that antipsychotic, so the amount of years of exposure. So that 20-year-old who I've initiated an antipsychotic medication, well, they're gonna be exposed for very long time, and so their risk will be high as well. Now combine the two factors together. I used to treat in a state-operated psychiatric center people who were 50 and 60 years old, who've been on first-generation antipsychotics for 30, 40 years. Well, there was a high rate of tardive dyskinesia in that population.
- Right. So you mentioned VMAT2 inhibitors. Is that fairly successful in treating all kinds of tardive dyskinesia presentation, or are there other treatment options available, such as physical therapy, I don't know, or something like that to also help?
- Well, I think VMAT2 inhibitors are by far the best treatment available today. They work quickly and as long as the patient continues to take them, it'll continue working. Once they're stopped though, the movements can come back, and come back pretty quickly. They are not necessarily worse than before, but they're back. So this is not a cure for tardive dyskinesia. It's a management tool to suppress the movements, and it does a good job of that without having to alter the dose of the antipsychotic that the person's receiving. In fact, you don't have to change anything else in that person's medication regimen. You just add on the VMAT2 inhibitor. And you see the effects pretty quickly. Within a couple of weeks, you should see a benefit, and this benefit continues over time.
- Okay.
- So they work well. They're also very well tolerated, and very few people in the clinical trials actually had to stop because of an adverse event, very, very few, so a well-accepted treatment.
- That's great to hear, 'cause yeah, that's often the case where you treat one side effect with the medication, and then there's new side effects. So that's good that it's well tolerated. I guess my final question is just why is it important to get screened for TD, and how does treatment help with improved quality of life?
- Well, screening for tardive dyskinesia is recommended as part of the new guidelines for the treatment of schizophrenia by the American Psychiatric Association. It was always part of the guidelines, but they really spell it out this time to make sure that it is done on a routine basis in anyone receiving what we call dopamine receptor blocking agents or antipsychotics. And when you see something, you do something now, 'cause we now have options to manage TD. If left untreated, well, for some people it may go away. And for other people, it doesn't get any worse, but there's those that it becomes a real significant problem. Once other people notice it, it can be quite stigmatizing. And a person themselves may not realize they're moving their mouth in a certain way. Other people see it, and then when it's paid attention to, they may be actually more phobic being in public or with other people. And I've seen instances where people will shop for their groceries at 10 o'clock at night so they don't run into their neighbors, and they become very socially isolative. So that can certainly happen.
- Yeah.
- And if the movements start interfering with speaking, chewing, eating, buttoning buttons, and tying shoelaces, and so on, well, that is actually disabling. So there's a whole host of impairments that can go along with tardive dyskinesia. And when treated, a person's level of functioning can improve.
- Mm-hmm. Yeah, I absolutely understand that. Like, I think I have a fairly mild case of it, but the blinking became to such an extent where I couldn't drive anymore, or the hand tremors kept me up at night. And so treating that definitely ameliorated my quality of life. And I just have a mild case, so I can only imagine how much it can ameliorate people with more severe cases of TD.
- Absolutely, and mild is in the eye of the beholder. So the new guidelines actually say if it is mild according to the frequency and intensity of the movements subjectively, but that person is very concerned about it, or if there's any degree of functional impairment, it needs to be treated.
- Right.
- So it really, the person with TD is an important component in the whole treatment process. And I need that input from the person I'm treating regarding how TD affects them, and I will routinely ask about all these other issues. Not necessarily just the movement themselves, but how it impacts that person, 'cause that's what's gonna be driving the urgency to treat.
- Right, well, thank you so much, Dr. Citrome, for joining us and answering these questions about TD. I learned a lot from you, and I know our audience probably has as well, so thank you so much for being a part of this.
- Well, thank you for this opportunity.
- All right, take care.
So thank you so much again to Dr. Citrome for being a part of this video on tardive dyskinesia. I learned a lot through him and through doing research about this on how to treat tardive dyskinesia, and the fact that it can hopefully be managed for most people. So thank you for watching this video. I hope you found it helpful, as well. If you have any experiences with tardive dyskinesia that we didn't cover in this video, or just that you would like to share, we would love to hear about it in the comments below. Thank you so much again for watching, and as always wishing you and your loved ones good health. We'll see you in the next video, bye.