What are the new treatments for dystonia in a woman?

Question

Hello doctor,

My dystonia began in my left hand approximately three years ago, but it has gradually spread to my neck and face. The muscle spasms have become so severe that I am now unable to write or type properly at work. My neurologist has been administering botulinum toxin (Botox) injections every three months, but the effects typically wear off after about six weeks. I also tried Baclofen, but it causes significant drowsiness and makes it difficult for me to function throughout the day.

The cervical dystonia is particularly troubling. It causes intense headaches, and my head constantly pulls to the right. Additionally, I have noticed that my menstrual cycles have become irregular since starting the medications, and my recent laboratory results showed an elevated prolactin level of 45 nanograms per milliliter (ng/mL). I have observed that the involuntary movements tend to worsen during my menstrual periods and when I am under stress. Although physical therapy provides some temporary relief, the spasms inevitably return.

Could you please advise me on the newer treatment options available for dystonia? Also, is it possible that hormonal changes are contributing to the worsening of my symptoms?

Kindly guide.

Answer 1

Hello,

Welcome to icliniq.com.

Thank you for reaching out. I am sorry that you are experiencing this progression. While dystonia is primarily a neurological condition, hormonal fluctuations can indeed exacerbate the symptoms. Your elevated prolactin level (45 nanograms per milliliter) and menstrual irregularities suggest that your current medications may be impacting your hormonal balance.

It would be important to discuss these hormonal changes with both your neurologist and your gynecologist to ensure a coordinated approach to your care.

Newer treatment options for dystonia include:

Deep brain stimulation (DBS): This is a surgical option considered for severe cases that do not respond adequately to medication.
Focused ultrasound: A non-invasive procedure that can target specific brain areas, such as the thalamus, to help control movement disorders.
Botulinum toxin (Botox) adjustment: Modifying the timing or dosage of your injections may improve their duration and effectiveness.
Prolactin management: Reviewing and potentially adjusting your current medications may help address the elevated prolactin levels and related symptoms.

In addition, managing stress and hormonal fluctuations may contribute to better control of your dystonia symptoms. It would be beneficial to coordinate care with both neurology and gynecology to explore a more comprehensive treatment strategy.

I hope this information has been helpful.

Regards.