This work may not be copied, distributed, displayed, published, reproduced, transmitted, modified, posted, sold, licensed, or used for commercial purposes. By downloading this file, you are agreeing to the publisher’s Terms & Conditions.

Patient Series

Patients Living With Tardive Dyskinesia

How to Self Check for Tardive Dyskinesia Between Visits and During Virtual Visits With Your Doctor

Joseph P. McEvoy, MD, Department of Psychiatry and Health Behavior, Medical College of Georgia, Augusta University, Georgia
Andrew A. Nierenberg, MD, Dauten Family Center for Bipolar Treatment Innovation, and the Depression Clinical and Research Program, Massachusetts General Hospital; and Department of Psychiatry, Harvard Medical School, Boston

© Copyright 2020 Physicians Postgraduate Press, Inc.
Supported by an educational grant from Neurocrine Biosciences, Inc.

Living With Tardive Dyskinesia

Joseph P. McEvoy, MD, Department of Psychiatry and Health Behavior, Medical College of Georgia, Augusta University

Watch the trailer

A series of 6 brief educational videos featuring expert insight and comments by actual patients and their family members helps people understand the risk factors for TD, recognize the early signs, and understand the importance of talking with their doctors about treatment.

What is TD?

What is tardive dyskinesia (TD)? What causes it? Am I at risk of developing it? How do the movements begin? What kind of impact can TD have on my life?
In this video, Dr. McEvoy describes what TD is and what causes it.

Know the Signs

Do you know the early signs for tardive dyskinesia (TD)? In this video, people who have experienced TD and their family members talk about what abnormal movements they noticed first. Dr. McEvoy explains the lack of control patients have over the movements and how long they can last.

Take Action

Here, people who have experienced tardive dyskinesia (TD) and their family members share advice on what to do if you notice early signs of TD. Dr. McEvoy weighs in on risk factors for developing TD. Their overarching message: It’s critical to speak with your doctor if you suspect TD because treatment is available.

Treatments

In this video, listen as Dr. McEvoy discusses new treatments for tardive dyskinesia (TD). People who have experienced TD discuss the benefits of treatment, and family members also share their observations.

Living With TD

Watch this video to hear from people who have lived with tardive dyskinesia (TD) about the burden that TD brought to their lives. They also share how medication has lessened that burden and allowed them to regain their lives.

Information for Families

Family members and caregivers are affected when their loved ones are living with tardive dyskinesia (TD). Watch as family members describe their worries and concerns and share how the new TD medications are helping improve the quality of their loved one’s life.

Commentaries:

Members of the Depression and Bipolar Support Alliance (DBSA) share their stories with you.

Posted July 29, 2019
My movement symptoms are relatively mild and were caused by medication associated with a surgery I had 3 years ago. The movements began about 3 months after that. My sister noticed them first. We were out to lunch together, and she pointed out that my tongue was moving inside my mouth and pushing out my cheek a little bit. Even when my mouth was closed, I had this movement inside and around my mouth.

Shortly after that, I went to a podiatrist because I was having trouble with my ankles. She wouldn’t work with me, however, unless I went to a neurologist first about the abnormal movements, in case it was some kind of neurologic disorder. I am a retired mental health therapist, and I’d seen tardive dyskinesia (TD) symptoms before in my clients. I didn’t know if my movements were caused by something other than TD.

When I went to see the neurologist, he sent me for an MRI, but I don’t think he discovered anything. He then referred me to a movement specialist, and it took a long time to finally get TD diagnosed. She recommended a couple of medications to treat the TD, but I couldn’t tolerate the side effects—dry mouth and constipation. They were not effective treatments either. The movement specialist gave me another medication that was very expensive, and I couldn’t justify the expense for something that wasn’t going to cure me. When I first took it, I got horrendous edema in my ankles and my feet, which was not noted as a side effect. Because I was in the process of having ankle surgeries, I just couldn’t have that. Because the movement specialist ruled out other causes of the movements, and they weren’t getting any worse, I chose to not take any more TD medication.

I went to an acupuncturist to try to manage the movements. Acupuncture is not a cure. The movements have changed a little in terms of the spot that my tongue anchors in my mouth. It’s been very difficult because my tongue often scrapes against my teeth, specifically against my molars. I’ve had the dentist smooth my upper molars, and now I need him to smooth out the bottom molars, too, because it is causing a great deal of pain inside my mouth. I also have pain because the tongue is a muscle and it sometimes gets overworked.

Before each subsequent surgery—I’ve had 3 major ones since then—I walked in with a list of medications and said, “Don’t even think about using any of these!” The doctors usually say that they don’t use them, but this last time they actually said, “Yes, we think it might have been the metoclopramide that caused the TD.” You need to be proactive; ask about any medications that will be used and possible side effects. I learned about metoclopramide, promethazine, and prochlorperazine presenting a risk for TD. Make sure that you’re protecting yourself as a health care consumer, recognizing that you have the right to say, “You can’t use this medication on me.”

The early signs of TD to look for are movements that seem to happen when you’re not aware so somebody else points them out to you, or any repetitive involuntary movements that do come to your awareness. My tongue involuntarily moves much of the time. I become aware of it when I’m anxious. Does the movement itself cause me anxiety? Not necessarily, but sometimes I’m a little embarrassed when a friend or my husband says, “Your tongue is wagging again.” It doesn’t really interfere with my social life because my tongue does not move outside of my mouth. If my mouth is half open, people can see it, but it’s not always obvious.

As far as advising other people what steps to take, once I noticed the movements, I went beyond my primary care doctor to seek out specialists. I think it’s important to rule out other disorders that may, in fact, lead to more disability. For other people, medications may stop the movements if they can tolerate the side effects, which I couldn’t. I would recommend starting with a movement disorder specialist, which I didn’t even know existed within neurology.

If my symptoms were more noticeable, I’d certainly be seeking treatment. The sad thing about it all is that this is what I’m going to live with for the rest of my life, and there’s no guarantee that it won’t get worse. Acceptance is needed, whether we like it or not. I’m kind of upset that I have it, but I’m lucky in that it’s not worse.

Posted May 3, 2019
I currently have some slight movements in my hands, face, and legs, and I’ve been taking some falls as a result of tardive dyskinesia (TD). Stress tends to magnify my symptoms, but the movements are more subtle than they were when my TD was diagnosed. My hand movements are kind of embarrassing, and it’s sometimes hard to get words out, or it feels like I’m stuttering, but other people are not always aware of it. I am not a very social person, and I would say that, because of the TD, I don’t get out a lot. It’s stressful meeting new people. My movements also interfere with my ability to work. I am currently on disability.

When I first began noticing the movements, in the late 1970s, there were a lot of things going on in my life at the time, and I didn’t associate the movements with my medication. I felt like I was moving like a robot, and there was a lot of jerking, mainly in my upper body. My movements were so much worse than they are today. For instance, I’d make a cup of coffee, sit down and then just knock it off the table. It was very distressing. My facial and tongue movements were bad. I used to sit on my hands to help with the shaking of my arms.

I remember my family coming to see me and they were really upset and alarmed at the way I was moving and with the speech impairment. They assumed that it was related to a medication I was taking because I’d recently been hospitalized. My family advised me to quit taking the medication, that it was too strong, and that I needed to go talk to the doctor. So, the very next time I saw my doctor, I talked to him about my symptoms.

My doctor at that time confirmed that the movements were a side effect of the medication and that he could give me something to treat it. He did mention tardive dyskinesia but didn’t go into a real explanation of what it is. Nothing helped me much, and I even stopped taking the medication that caused my TD, but then it got to a point that, even though I was miserable on the medication, I was more miserable off it.

I’m seeing a different doctor now, and it’s under his care that I’ve made progress with my TD treatment. My current doctor took more time to explain to me what was going on, that the movements were a result of the psychotropic medications I was taking, and that they could be permanent.

He started me on some new medications and experimented with decreasing a few of the medications I was already taking to get the right combination to treat my mental disorder and also help my TD symptoms. As a result, my level of distress has decreased tremendously. I am braver now socially. I am 100% introverted, so my new treatment for TD has given me a certain comfort level with people that I didn’t have before.

To others out there who may be experiencing TD, I would say to be patient. Don’t be alarmed. Tardive dyskinesia can be treated and can diminish with time. Take note of any early signs, such as problems with speech and any abnormal movements (motions that you’re not creating on your own). Talk to your doctor and be open, honest, and precise. First and foremost, write down all of your questions before you go. For me, it has also helped to get psychotherapy, which I am still doing today. If you have a doctor who doesn’t have time to talk to you about your concerns and how the TD makes you feel, then you need to find another doctor.

I want others to know that there is life after TD. I have a pretty good quality of life today, and I’m not as overwhelmed. That was the biggest thing, not letting it overwhelm me because that would make it worse. Hang in there. Don’t stop your medications. That was the worst thing that I could have done because it sent me into crisis, which was a lot worse than having the TD symptoms. Don’t be your own doctor. Talk with your provider about what’s going on.

Posted May 3, 2019
Jeff, TD Ambassador
I’ve taken many antipsychotics over the years, since I was 17, so it’ll be 50 years. I woke up one morning and realized my cheeks were puffing in and out uncontrollably. When I looked in the mirror, I was horrified by my image. I thought I was getting muscle spasms in my face from doing isometrics and leg lifts. After a while, the puffing in and out of my cheeks turned into grimacing, and I was somewhat relieved because my face was acting less violently. But I knew that grimacing was a symptom of tardive dyskinesia (TD). My doctor had mentioned TD at times before I was diagnosed with it. I had a friend that had TD, and she would roll her forefinger with her thumb. Grimacing was one of the TD symptoms that I was aware of. I had a colleague who grimaced just like how I was grimacing then.
Before I had the symptoms, my psychiatrist at the time told me that if I continued taking the medicine that I was on, I was going to have severe physical problems in the future. He wanted me to change medications. When he told me that, I wasn’t worried about a few years in the future because I was doing so well. I was teaching adult basic education classes for a literacy program, which was a paid position. I was a staff writer for 2 college newspapers. I was getting recognized for my volunteer work with International Friendship Organization. So, I didn’t want to risk losing that productivity and how well I was functioning in the community—and feeling comfortable in the community. I felt really great. That was the best of all the antipsychotics I had taken. I was glad that my psychiatrist let me stay on it and gave me the option to make my own choice of doing that.
When I grimace, my mouth opens wide, so sometimes people think I’m yawning. When I’m walking, I’m more likely to grimace. And my head is tilted, so when I’m walking, usually I have to hold on to something because it helps stabilize me. A lot of times, I’m walking with my hat in my hand, if I don’t have my work bag, because I can’t have my hands free due to the movements. I noticed that my strides are shorter, and it’s more of an effort to go around the corner than it was a couple of years ago. I can’t stand for long periods of time; I sort of get pain in my back. I do Tai Chi now, and if I skip a day or two, my breathing becomes very labored. I also have writer’s cramp, and a lot of times when I write, not only can’t others understand it but I can’t either. My fingers sometimes are painful. I have to sometimes use a thicker pen to feel comfortable writing.
But my TD symptoms don’t stop me from being in social settings or working. Years ago, because my breathing was so labored, I really couldn’t hold a job. It was too much effort before I started doing Tai Chi and other exercises. My head used to shake all the time before I started my Tai Chi discipline, but it removed that completely. I used to walk on the tips of my toes at one point, which was very frustrating. So, if I went to an eatery around the corner, I would have stopped about 3 or 4 times before I reached my destination because I was so exhausted.
For treatment of TD, at that time, there were few treatment options. Eventually, with my neck problems, I had injections of botulinum toxin, but unfortunately, it made my neck weaker. I felt like it was too potent, so I had to stop. I thought I had to live with this the rest of my life. I didn’t think that it was going to improve.
What really helped me was when I found the Tai Chi class by going to a dystonia group meeting. I was very self-conscious about all these movements, but when I joined the dystonia group, I saw that other people have similar movements. I was able to accept my condition after attending a few monthly meetings. I felt more relaxed about being out in public. Then, the dystonia group hosted a Tai Chi presentation, and the organization that did the presentation was from my neighborhood. So, that was a real blessing.
Besides Tai Chi, I do physical therapy exercises that are for people with Parkinson’s disease. I also incorporate some isometrics in my daily discipline, and I have fewer movements. When I read the Bible, I’m more relaxed and it calms me down, so I have less movement in my face. I try to stay away from foods with chemicals, like fat-free or diet foods, and I changed my toothpaste to a natural brand. I think I’d be grimacing much more today if I continued using those products. Now, we have new medications that could stop these movements that we didn’t have before. So, it’s important to explore different options. What works for me may not work for someone else.
My TD was caused by the old neuroleptic antipsychotics, but the new ones—the atypicals—can cause TD as well. So, if you see any difference in your movements or any stiffness in any parts of your body that wasn’t there before, and you’re taking an antipsychotic, you could be developing TD. You may get it in multiple places eventually. When you talk to your doctor when you have the first signs, ask what other parts of the body it can affect. And ask, “Can you help me with the stigma that I’m going to face?” Other people don’t know what it is, and people can stare—especially little kids. When I traveled by public transportation, toddlers would turn around and stare because they see that the movements are not normal. Some adults also stare for long periods of time. It’s very uncomfortable, but it can be dealt with.
I would tell others with TD that it really doesn’t define who you are. There are treatments and strategies that help you deal with it, go on with your life, and enjoy your life. When you have some success, it builds your confidence. I would encourage others with TD to try to be in the community and not just stay home because it’s a waste. You can waste years of your life staying at home. Instead, talk to your doctor about how to deal with the social stigma and about medicines that could really make a dramatic change. You may still have to deal with discrimination and prejudice, but you have to say to yourself, “These people don’t know you.” You deserve to have a productive life in the community.
Posted April 1, 2019
Shelly, TD Ambassador
I’m Mexican-American, and many Mexican Americans talk with their hands and use movement expression a lot. When I first began experiencing movements from tardive dyskinesia (TD), I thought they were exaggerated idiosyncrasies as a result of having more energy. The medication I was taking at the time for my mental health condition was the first medication that made me feel right in my own mind, more capable, and not so crazy. It’s like I was coming back to myself. So, initially, I thought the TD was me expressing newfound energy. I didn’t know that the movements were caused by my medication or something that could become permanent. My doctor had never warned me about TD.
This was about 10 years ago. When I went to the doctor, he could see the movements and identified right away that I had TD but didn’t mention it to me. He just said, “We’ll just put you on another medication and see what it does.” With the insurance I had at the time, I only saw my doctor every 3 to 6 months. So, here I go with another medication that does the same thing; I’m moving all over the place. When I went back to that doctor, I asked, “Can’t you just lower the dose, because I really like how this medicine makes me feel mind-wise?” And he said no, that the symptoms I was experiencing were from something called tardive dyskinesia and, if I keep taking these meds, the symptoms will become permanent. But, by that time, I had been taking that class of medication for 6 to 8 months, and the TD did indeed become permanent.
I currently have hand movements from TD that can get a little out of control, kind of like I’m playing the piano—I call them piano fingers. My tongue moves to where I slur my words, which can be—depending on whether I’m really stressed out or not—so bad that you can’t make out what I’m saying. My legs dance up and down. Sometimes I rock back and forth, and my husband says it makes him dizzy. So, when we’re in public, he’ll put his hands on my shoulders to stop me from rocking. The hand movements make my daughter self-conscious. When we’re in public together, she’ll grab my hands to keep them from going all over the place. My leg movements happen most often at night when I’m in bed. My husband has a bad back, so the jarring of the bed hurts his back, and sometimes one of us has to sleep on the couch. It makes me feel bad that something I can’t really control—and sometimes am not aware of—hurts my husband.
Since I’ve had TD, I’ve learned that people often assume that I’m inebriated or mentally deficient. That was another blow to me. I’ve gotten a lot of disapproval from people because they feel like I did this to myself, like I was drinking too much or doing drugs or doing something that put me in this state where my voice was slurring and couldn’t control my arms and hands. For example, one time I was pulled over while driving for switching lanes without using my blinker. I immediately became really stressed out, and my voice became so slurred that I could barely communicate with the police officer. And, of course, he was convinced that I was drunk. I tried to tell him that I had a condition called tardive dyskinesia—but are you aware of how hard it is to say “tardive dyskinesia” when you’re having symptoms? Ultimately, the officer was very understanding, and I eventually convinced him that I was not drunk. I even volunteered for a breathalyzer test, which after we talked for a bit he didn’t feel was necessary. Although I was not inebriated, the officer still called my husband to come and drive me home because he seemed to believe that my word-slurring somehow impaired my driving ability. I had no problems driving, though. I didn’t get a ticket, but it’s really hard to make people understand that the TD is just a movement disorder and that it doesn’t affect your judgment or certain capabilities.
I did not seek treatment for TD for a long time because one of my psychiatrists had told me that anybody who takes antipsychotics will eventually get TD and that I would just need to learn to deal with it. So, that’s what we did. My family and I came up with ways for me to deal with it. When I’m in public, I sit on my hands or I put one leg over the other and I grip the bottom of my foot so that nobody notices my hand flexing. I’ll cross my legs so my legs won’t bounce. A lot of times, I’ll catch the side of my mouth between my teeth so my tongue won’t start moving erratically. I have permanent scarring on both sides of the inside of my mouth from doing that.
I currently live in a small town, and only one health care provider here accepts my insurance. He (my general practitioner) came on board about 2 years ago. When I became aware that there was treatment for TD, I came to him and said, “I need help with my TD.” He looked at me and said, “You don’t have TD. If you did have it, the symptoms would be apparent, and you would have them all the time; I would be able to see them right now, and I can’t.” I was stunned and shocked and tried to explain to him that the symptoms don’t occur 24/7—that sometimes I wake up and they are more apparent, or sometimes stress brings them on—but he wouldn’t let me finish. He laughed at me and said, “Okay. I would know. I’m the doctor.” I ran out of his office crying. I came home from that appointment, and my husband and I went back to the office to try to talk to him, but he’d left for the day. There was a nurse liaison, though, who said I could see her instead of the doctor. I was so upset that my voice became so distorted that you couldn’t even understand me. My husband was trying to explain that I was having symptoms of my TD, but the nurse, who had heard of TD but had never seen symptoms of it, decided to question me about whether I had a drinking problem. The irony is, if I would have had those symptoms with the doctor, he wouldn’t have questioned my TD, but instead I had them with the nurse who had never seen what TD was and didn’t know what she was looking at. It was very traumatic.
I have now become better about advocating for myself, but I also recommend that you take someone with you to advocate for you, especially if you have trouble speaking. I take my husband to every doctor appointment, at least until I become comfortable with the provider. I have to say how important it is that my husband can validate my symptoms because, unfortunately, a lot of the time, doctors don’t believe what you say about your own life.I was not given any information on TD from my doctors or health care workers for quite some time, so I would suggest to anyone who may be experiencing it to please seek information yourself. When you get medication at the pharmacy, read the information about what side effects might occur. You’re going to have to advocate for yourself because a lot times doctors are too busy or are not aware that the patient is not going to figure out the side effects on their own. We tend to put a lot of trust in doctors to tell us all the information we need, but that’s simply not true. If you’re starting to experience early warning signs of TD, definitely ask your doctor if they can treat it. Also, get copies of your medical records and be sure that TD is listed; mine show it under the Allergies category, as an allergic reaction to some medications. I guess doctors don’t know where to put it.
The last thing I’d like to mention is that since social media is so big now, you’re able to reach out to people more easily than when my symptoms began. Don’t isolate yourself. Reach out to other people who have it because the first time I met someone who had the same symptoms, I can’t tell you the feelings that it evoked: kinship, a bond, a feeling of “I’m not alone in this world.” It made all the difference.
Posted January 24, 2019
My co-worker was the first person to notice my movements. We were working on a project together and she heard me thrusting my tongue against my teeth. She hated the noise that it made and said, “Stop it; that’s just disgusting.” I had no clue that I had been doing it until I started thinking back and realized that my tongue was raw. I started paying attention to these involuntary movements, things like grimacing and jaw-clenching as well as tongue-thrusting, and made notes to tell my psychiatrist. When I originally told her about them, she said that I had tardive dyskinesia (TD) and we needed to change my medications. She believed that the movements were happening as a result of the high doses of the psychiatric meds I was on. I had been taking the maximum dose of 2 antipsychotics, but she took me off both of those and started me on a different one. She also increased the dose of a benzodiazepine I was taking to see if it would help with the movements, which it didn’t.
I was really nervous and didn’t know what to expect because I had been on these treatments for quite a while at those doses and was doing well. I was afraid that I would crash and end up in the hospital, where I hadn’t been for quite some time. It was nerve-wracking, but the movements were limiting my life. I was embarrassed, especially because my co-worker had told me that it was disgusting. I didn’t feel like I could be near people without them noticing. I didn’t want to be made fun of. I didn’t want people to think I was doing it on purpose because I wasn’t. I had no control over it. Some people thought—because of the grimacing—that I was making mean faces and couldn’t smile. I would get called names that aren’t nice and are out of character for me, which was really hard to swallow. People who knew me would stick up for me and say that I was not that type of person, but it was sad that people would assume such things just because I was grimacing and not smiling.
Pretty soon after my TD diagnosis I started taking medication for it. For the most part, my symptoms are currently under control. When I was diagnosed with TD I really didn’t know much about it so this has all been a learning process. I didn’t even know at first that there were medications available for TD, but I have been taking deutetrabenazine twice a day for a year now. It has definitely helped me and I’m not experiencing any real side effects from it. In addition to my psychiatrist, I also regularly see a neurologist as a follow-up to a head injury and for migraines. At first he asked me why I was taking a Parkinson’s medication. I told him that it was actually for TD and explained my medication change and he said it made sense. He then performed an Abnormal Involuntary Movement Scale (AIMS) test and looked at how I was functioning in addition to the other issues that I was seeing him for. The AIMS test has since become a regular part of my neurology appointments with him.
My TD treatment has reduced my levels of distress. I feel more comfortable at work and being around people. I was at the point last year that TD was impacting my job and how I interacted socially. Other people were noticing the tongue-thrusting and the grimacing and making comments to me about it. Once in a while, people will still make comments, but it’s rare compared to what it used to be. I do have to really work at smiling because I think the TD had been going on for so long without me realizing it that the muscles in my face have to relearn how to work properly, but mostly I only have symptoms when I’m very stressed, tired, or haven’t slept overnight. Before I even started taking TD medication, I tried as much as possible to not get too stressed and to not go without sleep because those two things made my symptoms worse. I really focused on good sleep hygiene and stress management, and these things are still important. Also, if I miss a dose, the symptoms will reappear, but they resolve when I get back on the medication.
For anyone who has experienced or is experiencing TD-like movements, I would encourage them to talk to their doctor as soon as they notice it. The longer you wait, the more you set yourself up to have the symptoms long-term or permanently and need the medications. The best course of action is to educate yourself and talk with your physician as soon as possible to figure out a treatment plan. When I discuss my experience with TD with others, I try to encourage folks to advocate for themselves, to know the names of the medications they are taking, and to bring them up to their doctor. TD medication decreases and can even eliminate symptoms. I’ve learned that people with TD have much more hope than ever before. You don’t just have to live with it. I’ve participated in TD awareness campaigns for organizations such as the Depression and Bipolar Support Alliance (DBSA). I definitely think the message is slowly getting out there that treatment options are available and that your quality of life can greatly improve.
Posted October 26, 2018
Finding out that I had tardive dyskinesia (TD) came many years after my symptoms first appeared 15 years or so ago. My basic problem was twitching in my right shoulder. Family members initially noticed that I was twitching and looked very uncomfortable, but because TD manifested itself in an area of my body that I’d already had issues with—arthritis in my neck, a bone spur, degenerative discs—I didn’t think I was exhibiting signs of something new. When I started going to see doctors about it, they thought it was related to my other health issues. I also had had surgery for a torn rotator cuff on my left side, so I wondered if something similar could be happening on the right side. Orthopedic doctors kept taking MRIs and X-rays but never found anything. I kept going to physical therapy, too.No one suspected it could be TD until I met with a new psychiatrist from the VA who mentioned it to me for the first time. All of a sudden, it seemed to progress and was getting a lot worse in a very short period of time; the symptoms were very similar to Parkinson’s disease. My whole body was involuntarily shaking. I had complete spastic symptoms. I couldn’t hold my head, my arms, or my legs still. One day it had gotten so bad that a psychiatric nurse had to be called in to give me a shot to calm it down.
I’m on treatment for TD now, and my medication that is associated with the condition has also been reduced, which helped immediately. I had been taking lithium for a long time, which can cause TD, and then I began taking quetiapine (Seroquel), which also has TD as a possible side effect. However, I had never heard of TD being a side effect of either of those medications. The concern about lithium was that it could be damaging to your kidneys.
With treatment, I don’t think I’m exhibiting any signs of TD, and others say they don’t notice it anymore either. Sometimes I think my shoulder gets “tight,” especially when I’m stressed, but I believe that’s a mental thing, like a phantom limb syndrome, due to having experienced TD symptoms for so long; I just expect them now. I have more confidence and feel more at ease meeting with people and speaking with groups. Beforehand, the movements were very noticeable and people would focus on it, which made me feel very self-conscious. TD had a big effect on my social life and my professional life. I’m a real estate broker, so it caused a lot of distress. I still saw friends and worked, but I was very self-conscious for many, many years about the involuntary movements.
My advice for people who may suspect they have TD is to—first of all—recognize any movements that are new, come on quickly, and/or aren’t familiar to you. The symptoms can be hard to recognize in yourself, but you can ask family members to tell you if they notice movements. If you’re on any kind of psychiatric medications—like antidepressants or antipsychotics—and are experiencing tongue movements or parts of your body twitching, my suggestion is to contact a neurologist and talk with the doctor who is prescribing the psychiatric medications. I think the medical profession needs to be more educated on the condition. They have to look for TD more often and not ignore it.People don’t have to “live with” TD anymore. It’s a neurological condition. People need to be educated about this. I went for close to two decades with TD, and no one ever put it together as a side effect of the medications I was taking. Now, we know that TD can be treated.

Understanding Tardive Dyskinesia

Has your doctor talked with you about a potential side effect called tardive dyskinesia (TD)? This condition can—but does not always—occur with long-term use of certain types of medications, such as antipsychotics. You might develop involuntary, purposeless, and repetitive movements of the face/mouth or body. In some cases, TD is irreversible even if you stop taking the medication that triggered the side effect. But now, TD can be treated.

Did You Know?

  • The biggest risk factors for TD are increasing age, being female, and having taken antipsychotic medications for months or years, especially if you had side effects like stiffness and tremor.
  • Early signs of TD often are jerky, irregular movements in the face, lips, tongue, arms, legs, hands, feet, and trunk.
  • Treatments for TD are now available, and studies have shown that these new medications are effective and well tolerated.

Could You or a Loved One Have TD?

Ask yourself the following questions. If you or your loved one might be experiencing TD, talk with your health care provider.

  • Are you taking a medication that can trigger TD? If so, have you been taking it for a long time?
  • Have you noticed any abnormal movements? Or has a friend or loved one noticed these symptoms?
  • Did you have any abnormal movements when you started taking the medication?
  • Have the movements limited your life?

Hear From People Who Have Experienced TD

Visit www.cmeinstitute.com/patients to watch brief videos featuring a nationally recognized psychiatrist, his patients, and their family members.

The 6 brief videos cover a range of topics:

  • What Is TD and What Causes It?
  • Know the Signs: Early Recognition of TD
  • Take Action: What to Do if You or Your Loved One Has Evidence of TD
  • Approved Treatments for TD
  • Living With TD: For the Patient
  • Living With TD: For the Family

The earlier TD is diagnosed, the better. If you or a loved one could have TD, don’t wait to contact your health care provider because treatment is available. Together, you can determine a treatment plan that is right for you.

Click here to download brochure PDF version

 

© Copyright 2018 Physicians Postgraduate Press, Inc.
Supported by an educational grant from Neurocrine Biosciences, Inc.

In cooperation with:

Depression and Bipolar Support Alliance (DBSA)

Mental Health America (MHA)

Schizophrenia and Related Disorders Alliance of America (SARDAA)

Quick Links: Tardive Dyskinesia

References