Is dystonia permanent, or can it improve over time?

Question

Hello doctor,

My 38-year-old daughter developed dystonia about eight months ago, and we still do not know what caused it. Started with her neck pulling to the right side really badly, and now her whole shoulder and arm are involved.

She was on Risperdal for postpartum depression after her baby was born, and the neurologist thinks that might have triggered the dystonia, but stopping the medicine did not help. The spasms are so painful that she cries and can not hold her baby properly anymore.

Tried Botox injections in her neck muscles, which helped for maybe six weeks, but then symptoms came back even worse. She is on Baclofen 20 mg three times daily, but it makes her so drowsy that she can not function.

The dystonia gets worse when she is stressed or tired, and by evening, she can barely turn her head at all. Had an MRI of the brain and cervical spine, which were both normal. Physical therapy has not helped much either. She is so depressed because she can not take care of her 9-month-old baby the way she wants to. Is dystonia permanent, or can it get better with time? Also worried about taking medications while breastfeeding.

Please help.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com.

I can understand your concern.

I understand how difficult this is for your daughter, both physically and emotionally, especially with a young baby. Let me explain clearly:

This sounds like cervical dystonia (spasmodic torticollis), an involuntary tightening of neck and shoulder muscles causing twisting or pulling. In her case, it likely began as a drug-induced dystonia due to Risperidone (a dopamine-blocking medicine). Sometimes, even after stopping the drug, the dystonia can persist, called tardive dystonia, because of lasting changes in brain chemical balance.

Why does it continue in some people, and the abnormal muscle signals remain even after the trigger medicine is stopped? Stress, fatigue, or lack of sleep can worsen spasms.

Treatment approach-

1. Botulinum toxin (Botox) injections remain the best symptomatic treatment.

If the effect lasted only six weeks, the dose or injection sites may need adjustment in the next session.
Re-injections are usually needed every three to four months for sustained relief.

2. Oral medicines like Baclofen, Trihexyphenidyl, or Clonazepam may help but often cause drowsiness. The neurologist can titrate to the lowest effective doses or switch combinations.

3. Physiotherapy and stretching under supervision are useful mainly for maintaining mobility, not curing dystonia.

4. Deep-brain stimulation (DBS) is an option if symptoms remain severe and disabling after medical and injection therapy.

5. Psychological support is very important; postpartum stress and chronic pain can worsen the condition.

Breastfeeding:

Baclofen is generally considered safe during breastfeeding in usual doses, as very little passes into milk, but the baby should be monitored for sleepiness.
Botox injections are locally acting and not absorbed systemically, so they are also safe while nursing.

Prognosis:

Some cases of drug-induced or postpartum-onset dystonia gradually improve over one to two years, especially with consistent treatment and stress management. However, if it has become tardive, it may persist long-term but can still be well controlled with regular Botox therapy and medication adjustments.
Encourage her to stay connected with a movement disorder specialist, who can individualize her injections and medicines; this makes a big difference. Support, rest, and gradual rehabilitation can help her regain confidence and function with her baby.

I hope this helps.

Kindly follow up if you have more concerns.

Thank you.