Patients Living With Tardive Dyskinesia

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.