Why does tardive dyskinesia worsen despite stopping drugs?

Question

Hello doctor,

I am 55 and developed tardive dyskinesia after years on antipsychotics. I stopped the medication months ago, but the symptoms keep getting worse. Kindly tell me the following:

Why does tardive dyskinesia at 55 continue worsening despite stopping the causing drug?
Does age make recovery harder or slower?
I am on Valbenazine now, but the progress feels very small. Will this ever stabilize or reverse?

The movements are embarrassing and painful, and affect eating and talking. I feel hopeless when people say stopping the drug should fix it. I just want to know if there is a realistic chance of improvement.

Please help.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com.

I have gone through your query and understand your concern.

Living with persistent tardive dyskinesia (a brain disorder that causes repetitive involuntary movements) can be physically exhausting and emotionally distressing, especially when you expect the movements to improve after stopping the medication.

Unfortunately, tardive dyskinesia does not always get better immediately after the causative antipsychotic is discontinued. The medication can cause long-lasting changes in the brain's dopamine receptors, and once those changes have developed, the abnormal movements may persist, remain stable, or even appear to worsen for a period after the drug is stopped. This is sometimes called withdrawal-emergent worsening and does not necessarily mean permanent progression.

Recovery is highly variable. Some individuals take months and even years to recover, while other individuals never recover. Old age, chronic administration of dopamine antagonists, and the intensity of symptoms could cause a delay in recovery, making it incomplete, but it does not rule out the possibility of recovery at all.

It is also important to know that Valbenazine is one of the most effective treatments currently available for tardive dyskinesia, but it often reduces symptoms rather than eliminating them.

Improvement can take time, and the dose may have to be adjusted or even reconsidered in terms of the need for another treatment strategy, such as Deutetrabenazine, depending on your lack of improvement.

Regular follow-up is important because other movement disorders (a group of disorders affecting movements) or medications can sometimes worsen symptoms and may need to be addressed.

Although it can feel discouraging, many people do experience meaningful improvement or stabilization over time, even if recovery is slower than they hoped. If the movements are significantly affecting eating, speaking, or causing pain, let your treating specialist know, as these symptoms may warrant earlier reassessment of your treatment plan and referral to speech or occupational therapy for additional support.

If you develop difficulty swallowing that leads to choking, significant weight loss, or trouble breathing because of the movements, you should seek urgent medical evaluation.

I hope I have answered your question.

Let me know if I can assist you further.

Thank you.