Coping With Tardive Dyskinesia

There are emotional and physical issues to consider

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Coping with tardive dyskinesia involves addressing the emotional, physical, and social issues associated with this movement disorder. Because tardive dyskinesia is a medication side effect, living with the condition involves managing the primary illness as well as the drug side effect.

Approaches for coping with tardive dyskinesia often involve an integrated care strategy that combines medical management, psychological counseling, family support, and sometimes professional assistance with activities of daily living.

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Emotional 

Tardive dyskinesia is associated with varying degrees of emotional distress. Some people who experience this side effect are aware of the involuntary movements and can be self-conscious about it. On the other hand, some people do not have insight into the reality of the symptoms and might not be bothered by the physical effects. 

The level of insight and emotional distress associated with tardive dyskinesia is often related to how much the primary illness impacts awareness.

The condition can develop as a side effect of medication taken to treat schizophrenia, depression, epilepsy, gastrointestinal (GI) disorders, and more. These primary conditions each have varying effects on a person's cognition and awareness of symptoms.

Examples of emotional responses to experiencing tardive dyskinesia:

  • If you develop tardive dyskinesia as a side effect of treatment for depression or a GI illness, you may be very aware of the involuntary movements, and you could be very distressed by the symptoms. 
  • If tardive dyskinesia develops as a side effect of treatment for schizophrenia, you could be disturbed by the involuntary and unpredictable movements, and you might talk to your doctor about whether you could stop taking the causative antipsychotic medication or you might ask for treatment for your tardive dyskinesia.
  • If your loved one develops tardive dyskinesia and has profound and persistent symptoms of schizophrenia, cognitive impairment might prevent them from acknowledging or becoming upset about the effects of tardive dyskinesia.

Tardive dyskinesia can elicit a range of emotional responses. If you are upset about your symptoms, you should discuss your feelings with your doctor. Several treatment options can reduce or eliminate symptoms of tardive dyskinesia. 

You may also benefit from talking to a therapist, who can help you define your priorities in weighing the benefits of treating your primary condition with the side effects of that treatment. 

Physical

Research shows that the involuntary movements of tardive dyskinesia are the primary concern of people who experience this side effect. Early recognition of the symptoms can help with timely management. Talk to your doctor or pharmacist to learn the early signs of tardive dyskinesia so you will notice them if you start to experience any.

Sometimes periodic blood tests to monitor antipsychotic drug levels can also help prevent or reduce this side effect.

Health Effects 

Several adverse health effects can occur due to tardive dyskinesia. It can lead to substantial impairment in managing daily life and self-care. You can work with your medical team to manage these issues.

  • Diet: Tardive dyskinesia can lead to problems chewing and swallowing, which may result in diminished food intake. Dietary management, possibly with the guidance of a nutritionist, can alleviate problems like malnutrition. Sometimes a feeding tube may be necessary to avoid excessive weight loss.
  • Safety: You can be at risk of problems like falling or other injuries due to tardive dyskinesia. You can work with an occupational therapist who can teach you how to manage your day-to-day life more safely. 
  • Walking assistance: Depending on the specifics of your involuntary movements, you might need to use a cane or a walker to get around safely. 

Even if you have tardive dyskinesia, it is crucial that you do not adjust your medication on your own. Stopping or modifying these medications can have serious adverse effects.

Work with your doctor to create a plan that will help alleviate tardive dyskinesia without causing harmful effects of your primary medical or psychiatric condition.

Social 

Living with tardive dyskinesia can cause people to avoid others due to embarrassment about the movements. This can lead to social isolation and depression. If you are starting to avoid people because of your tardive dyskinesia, discuss this issue with a mental health professional.

Family Therapy 

Tardive dyskinesia can also affect the whole family. Group therapy can be beneficial for families who are coping with tardive dyskinesia. Antipsychotics used to treat schizophrenia are the medications that most commonly cause tardive dyskinesia, and family therapy is also an important way of coping with schizophrenia. 

Your therapist can meet with family members together and individually to discuss feelings and coping mechanisms for dealing with tardive dyskinesia. 

Support Groups

You can consider joining a support group so you can meet with others who are also coping with tardive dyskinesia. You can ask your doctor for a recommendation, or you can search locally for an in-person group or online for a group that meets virtually. 

Support groups can help members feel less alone and may share helpful advice and encouragement. Be sure to talk to your doctor to get their opinion before trying any self-help remedies that you might hear about in a support group.

Something that is safe and might work for someone else might not work for you or could be unsafe for you, depending on your health condition. 

Practical

There are a number of practical issues that arise due to tardive dyskinesia. It can be difficult to maintain a job, and you could have trouble with things such as driving. Discuss your concerns with your healthcare team. You may benefit from talking to a case manager who can help you navigate solutions. 

You can get help with the following:

  • Work accommodations: You might need help finding a job where your disability will be accommodated. 
  • Transportation: You may need guidance with transportation so that you can get around safely, despite your physical symptoms. 
  • Living assistance: You may need to have some help at home, such as with taking medication or other assistance that your doctor and case manager would like for you. 

If you are not getting adequate control of your symptoms despite treatment, you might want to ask your doctor if they can refer you for a clinical trial. This could be a way for you to get access to treatment for tardive dyskinesia that is still in the developmental phase and that you might not be able to get otherwise. 

A Word From Verywell 

Living with tardive dyskinesia can be a challenge. It often requires a balance between managing your primary condition—whether it is schizophrenia, depression, or another condition—and living with the side effects of treatment.

You should talk to your doctor about this side effect and any distress that you are experiencing so that they can help you achieve better symptom control with minimal side effects. 

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