How can my daughter, 38, manage cervical dystonia?

Question

Hello doctor,

My 38-year-old daughter developed cervical dystonia six months after her second baby was born, and we do not know what caused it. Her neck keeps twisting involuntarily to the right side, and the muscle spasms are so painful that she cries most days.

The neurologist thinks it might be related to the epidural she had during delivery or possibly postpartum hormonal changes. She tried Baclofen and Clonazepam, but they made her too sedated to care for her 18-month-old and 4-year-old children.

Botox injections in her neck muscles helped for about 10 weeks, but now the dystonia is returning and is worse than before. Her husband works long hours, so she is alone with the children most of the time and cannot even lift the baby when her neck locks in position.

Physical therapy and massage therapy provide temporary relief, but insurance only covers limited sessions. Her prolactin levels are still elevated at 89 because she is breastfeeding the baby. Can breastfeeding hormones make dystonia worse? She is also worried about taking stronger medications while nursing. The muscle spasms wake her up at night, and she has not had a full night’s sleep in months.

Please advise.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

This sounds exhausting and painful. Cervical dystonia appearing postpartum is not very common, and it is usually not directly caused by an epidural.

The postpartum period, however, involves major hormonal and neurochemical changes, and factors such as stress, sleep loss, and elevated prolactin from breastfeeding can aggravate underlying neurological problems or lower the threshold for movement disorders. Breastfeeding hormones, particularly prolactin and estrogen changes, may indirectly make the condition worse, mainly through sleep disruption and muscle tone changes, but they are not considered the root cause of dystonia.

In her case, this is most likely idiopathic cervical dystonia that became unmasked after delivery, worsened by hormonal shifts, sleep deprivation, and the physical strain of childcare.

It would be useful to perform an MRI (magnetic resonance imaging) of the brain and cervical spine (if not already done), repeat prolactin and thyroid function tests, and have a detailed neurology evaluation to rule out secondary causes. A sleep and mental health assessment may also help, since chronic pain significantly worsens mood and coping.

Botox remains the mainstay of treatment, and repeat injections every three to four months are common. Non-sedating pain relief and muscle relaxation strategies may also be useful, tailored by her neurologist. Since she is breastfeeding, most oral medications for dystonia are tricky, but risk–benefit discussions and careful timing of doses around feeds can sometimes help.

Referral to a movement disorder specialist is advisable if available, as they can guide advanced options like deep brain stimulation if symptoms become resistant. Counseling and a stronger support system will also be essential, since she will need help with childcare on difficult days.

Close neurologist follow-up is important for long-term management. Monitoring prolactin levels, menstrual status, and breastfeeding plans will help shape treatment choices, as options will expand once lactation ends. A gynecology consultation may also be needed to confirm that prolonged high prolactin is due only to lactation.

I hope this has helped you.

Please feel free to reach out to me again if you have further queries.

Thank you.

How can my daughter, 38, manage cervical dystonia?

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