How can I manage tardive dyskinesia due to psychiatric meds?

Question

Hello doctor,

I have been taking Risperidone for bipolar disorder for ten years, and over the past 22 months, I have developed uncontrollable involuntary movements in my face, mouth, tongue, and jaw that I absolutely cannot stop or suppress.

My tongue constantly moves, darts in and out involuntarily, my jaw makes continuous chewing and grinding motions even when not eating, and my face grimaces, puckers, and contorts on its own without control.

These involuntary facial movements happen continuously throughout the day and are extremely embarrassing and socially stigmatizing when talking to people at work, in public, or socially, causing me to avoid interactions and become increasingly isolated. I also have involuntary finger movements, arm jerking, and occasionally leg movements.

My psychiatrist said I have tardive dyskinesia from long-term antipsychotic use, and I am terrified it might be permanent.

Are these movements reversible if I stop the medication, or will they worsen if I continue my psychiatric drugs?
What are the risks of stopping antipsychotics suddenly, and what treatments exist, such as VMAT2 inhibitors like Valbenazine or Deutetrabenazine?
How effective are these, and what side effects do they have?
Can I safely switch to other psychiatric medications without worsening TD?
What causes this condition?
Is it due to dopamine receptor supersensitivity?
Why did it happen to me and not others on the same medication?
Will it ever improve or just stabilize?
Can Botox or other treatments help, and what is my overall prognosis?

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

I read your query and can understand your concern.

I am sorry you have to experience tardive dyskinesia (TD), and it is an extremely difficult condition, considering the fact of social embarrassment.

This is not your mistake or something wrong you have done; this is a medical condition that is caused by long-term use of antipsychotics. Others usually understand it, and it is our own social anxiety that triggers the thoughts that others are laughing or making jokes about it. Actually, stress makes it worse; therefore, you need to work on it.

Everyone is different and takes different doses; therefore, the same medicine sometimes causes TD in some patients but not in others. It is due to multiple reasons, as mentioned, dose, duration, genetics, age, co-morbid substance abuse, and taking anticholinergic drugs.

Almost 60 percent of patients improve if they switch antipsychotics or take VMAT2 (vesicular monoamine transporter 2) inhibitors. It means most of the patients improve, but it can also persist in a few patients. Therefore, the prognosis is mixed. Cure may not be possible for everyone, but stabilization is very much possible.

Do not abruptly stop the antipsychotic medication, as this can cause a relapse of your underlying disorder. Sudden withdrawal may also trigger an excessive release of dopamine, and since your receptors are already hypersensitive, your symptoms could worsen significantly. A gradual switch to another medication, such as Quetiapine or Clozapine, along with Valbenazine, is usually recommended. It may take some time before you notice improvement.

You can monitor your progress using the AIMS (abnormal involuntary movements scale), which is easily available online.

Additional helpful measures include reducing caffeine and nicotine intake, stopping any other substance use, discontinuing any anticholinergic drugs if possible (after consulting your doctor), and practicing relaxation techniques like deep breathing or progressive muscle relaxation.

Botox injections can help in cases of focal tardive dyskinesia, for example, affecting the eyes, lips, or neck. They can provide quick relief for socially distressing movements, but the injections usually need to be repeated every two to three months.

I hope I have answered your question.

Let me know if I can assist you further.

Thank you.