I am 51 with TD for 6 yrs. How to treat the abnormal movements?

Question

Hi doctor,

I am 51 years old, and developed tardive dyskinesia after taking Haloperidol for six years to manage bipolar disorder with psychotic features. My AIMS score is 21, indicating severe movement disorder with constant facial grimacing, tongue protrusion, and involuntary chewing movements. The psychiatrist discontinued Haloperidol eight months ago and switched me to Clozapine, requiring weekly blood monitoring with my ANC currently at 4,200/μL.

However, the abnormal movements have not improved and are getting worse. I also have chorea in my hands and fingers that interfere with writing and eating. The movements are so noticeable that strangers stare, and my teenage daughter is embarrassed to be seen with me in public.

I have lost 22 pounds because chewing and swallowing are difficult, and my speech is often unclear due to tongue involvement. My neurologist started me on Deutetrabenazine 12 milligrams twice daily, but I am experiencing depression and fatigue as side effects. The movement disorder is destroying my self-esteem and social functioning. I work as an administrative assistant, but the hand movements make typing nearly impossible. Are there other VMAT2 inhibitors with fewer psychiatric side effects? What about botulinum toxin injections for facial movements? I need realistic expectations about recovery - will these movements ever resolve completely?

Please help.

Answer 1

Hi,

Welcome to icliniq.com

I can only imagine how difficult this must be for you, especially when it is affecting your speech, your ability to eat, your job, and even your relationship with your daughter. Tardive dyskinesia (TD) can be a deeply isolating and frustrating condition, and it is completely understandable that you feel overwhelmed and exhausted.

Treatment options:

Deutetrabenazine

Helpful, but unfortunately, depression and fatigue are known side effects.
In that case, Valbenazine could be considered; it is another vesicular monoamine transporter (VMAT2) inhibitor.
It may have a slightly better side effect profile for some people. It is worth discussing this with your neurologist.

Botulinum toxin injections

These can help with localized facial movements, especially distressing features like grimacing or tongue thrusting. I have seen patients get relief with that, though it needs a skilled injector and may require trial adjustments.

I want to be honest, TD that has lasted this long can be partially reversible, but full recovery is rare, especially after stopping the offending drug. However, many patients do find meaningful improvement and better quality of life with the right mix of meds, supportive care, and sometimes occupational therapy. You have shown incredible strength by managing this so far.

I hope this answers your query. Thank you.