How do I keep working with cervical dystonia at 29?

Question

Hello doctor,

I have cervical dystonia, and my neck keeps twisting to one side without warning, sometimes right in the middle of a meeting or while I am at my desk. My neurologist said that my last Botox injection wore off faster than expected and wants to try a higher dose.

I am only 29, and I am terrified of losing my job because of this. I have already used up all my sick days. How do I keep working with cervical dystonia at 29 when I cannot even predict when my neck is going to spasm next?

Kindly advise.

Answer 1

Hello,

Welcome to icliniq.com.

I am sorry you are going through this.

Cervical dystonia can be especially frustrating and emotionally exhausting at a young age, particularly when it affects your confidence, daily activities, and ability to work. If your Botulinum toxin (Botox) injections are wearing off sooner than expected, your neurologist’s plan to adjust the dose or injection pattern is a reasonable approach. Many people with cervical dystonia require individualized treatment plans to achieve longer-lasting symptom control and improved quality of life.

In addition to medication management, physical therapy for dystonia, exercise for stretching, reduction of stress, and the use of sensory tricks or certain postures that minimize neck pulling can be beneficial to reduce the symptoms throughout the working day. You can also try to negotiate some accommodations in your workplace, including flexible working hours, breaks in between to move around, changes to the workplace, or telecommuting.

Keeping a diary of your spasms, potential triggers, symptom severity, and how long the benefits of each injection last can provide valuable information for your neurologist and help guide future treatment decisions. Although cervical dystonia can be unpredictable, many individuals are able to continue working successfully with optimized treatment, supportive workplace accommodations, and ongoing communication with their healthcare team.

Do not hesitate to discuss your concerns openly with your neurologist, especially if your symptoms are affecting your job performance or emotional well-being.

I hope this helps you.

Thank you.