Living With a Dystonia Head Tremor – A Patient’s Journey to Diagnosis

Understanding Dystonia Head Tremor

Dystonia is a neurological movement disorder that causes involuntary muscle contractions. When it affects the neck and head, patients may experience twisting postures or a persistent head tremor. This type of dystonic tremor is often misdiagnosed, leaving patients searching for answers for years.

Cervical dystonia, also called spasmodic torticollis, is the most common form of focal dystonia. For many patients, the condition causes physical discomfort and significant emotional distress.

A Diagnosis at Last

In 2004, I began to notice that I had a head tremor. I was in a top position at an entertainment company and the stress was enormous. In my position, I had to present to famous Hollywood actors and powerful producers. My head tremor made my life miserable and caused a lot of embarrassment. I also felt that my dating prospects changed and that men were turned off by my tremor.

I sought to cure the impediment by seeing several neurologists who used MRI’s and CAT scans to diagnose a benign tremor that “I would just have to live with.” I also saw an opthalmologist, tried massage therapy, acupuncture, yoga, meditation, and healers of all kinds. Nothing worked.

At the beginning of 2016, I saw a neurologist for headaches I had been experiencing. The neurologist noticed my head tremor and recommended that I see Dr. Melita Petrossian instead of him. I returned that afternoon to see Dr. Petrossian who asked me several questions, performed physical tests, and observed my tremor in order to determine the cause. Within ten minutes she was able to diagnose my tremor as cervical dystonia  – basically an overactive muscle in my neck that was causing the tremor. She explained that with botulinum toxin (Botox®)injections, she believed she could stop the tremor. After 12 years of distress, anxiety and embarrassment, I finally had a diagnosis and treatment plan. I burst into tears.

Treatment with Botulinum Toxin

I received the Botox® treatment. I didn’t know what to expect, but within a week my head tremors had subsided. Within two weeks, it was gone. All my friends and family commented that my tremor had disappeared and I realized that indeed it had.

My embarrassment was at an end. I could watch movies in a theater without holding my head and feeling ridiculous. I could go to church without feeling that everyone was staring at my tremor. I could be in a stressful situation without experiencing the tremor. I could present to audiences without feeling like an invalid. I could sleep without waking up from the head tremor. I could meditate without my head tremor driving me insane and causing me to throw in the towel. And my fear that I would be ditched by my boyfriend because of the tremor was eliminated.

Life After Treatment

I can’t begin to thank Dr. Petrossian enough and have great faith that she and the staff at the Pacific Movement Disorders Center located at Providence Saint John’s Health Center will help many others, too!

Ella C.
Los Angeles, CA

FAQs About Dystonia Head Tremor

Does dystonia cause head shaking?

Yes. When dystonia affects the neck and head muscles, it can lead to involuntary movements such as twisting, jerking, or shaking. This type of head tremor is common in people with cervical dystonia.

What is dystonic head tremor?

A dystonic head tremor is an irregular shaking or oscillation of the head caused by abnormal muscle contractions in dystonia. Unlike essential tremor, which tends to be rhythmic, dystonic tremor often occurs in combination with abnormal postures or twisting of the neck.

What is a head tremor a symptom of?

A head tremor may be a symptom of several conditions, including cervical dystonia, essential tremor, Parkinson’s disease, or other neurological movement disorders. A neurologist specializing in movement disorders can determine the underlying cause.

How do you fix a head tremor?

Treatment depends on the underlying cause. For dystonia head tremor, the most effective therapy is often botulinum toxin injections, which relax overactive muscles. In some cases, medications, physical therapy, or DBS (deep brain stimulation) may be recommended.

What is the life expectancy with a dystonic tremor?

While dystonic tremor can significantly impact quality of life, it does not reduce life expectancy. With proper treatment, most patients are able to manage symptoms and maintain daily activities.

What treatments are available for cervical dystonia?

The primary treatment for cervical dystonia is botulinum toxin injections, which help reduce abnormal muscle contractions and tremors. For patients with more severe or refractory symptoms, oral medications, supportive therapies, and DBS surgery may also be considered.

When to Seek Care

If you or someone you love is living with a persistent head tremor or unexplained neck movements, it is important to see a neurologist who specializes in movement disorders. Early diagnosis and treatment can greatly improve quality of life for dystonia patients.

Want to learn more about treatment options?

Connect with a specialist at Pacific Neuroscience Institute’s Movement Disorders Center.

About Dr. Petrossian

Dr. Melita Petrossian is a Harvard-trained neurologist and movement disorders specialist and is the medical director of the Pacific Movement Disorders Center at Providence Saint John’s Health Center and Providence Little Company of Mary Medical Center in Torrance. Dr. Petrossian’s clinical interests and expertise are in movement disorders such as Parkinson’s disease (PD), tremor, dystonia, gait disorders, ataxia, myoclonus, blepharospasm, hemifacial spasm, spasticity, and tics; as well as Parkinson’s-related conditions such as Dementia with Lewy Bodies, progressive supranuclear palsy, and multiple system atrophy.