Jonathan Allen first picked up the trombone in the fourth grade. After playing for years, he eventually earned a doctorate in musical arts and a teaching position at the University of Iowa.

Then, one day, he picked up his instrument and could no longer play.

Allen had developed embouchure dystonia, a condition discussed in vague, fearful whispers among musicians.

“I didn’t know much about what it was. All I heard was that [the condition] makes it so that you can’t play anymore,” Allen said.

Embouchure dystonia, also known as focal dystonia or musician’s dystonia, is a neurological condition that presents as a sustained inability to control muscle contractions. For brass musicians like Allen, whose mouth movements have to be as calculated as they are precise, the condition is considered a career-ender. The disorder can affect one of every 2,500 Americans, according to the National Institute of Health.

“I looked like I maybe had a stroke,” Allen said, describing his embouchure. “The right side of my face was dipping [and] some muscles had stopped working.”

Henry Hoffman, an otolaryngologist and a professor at the UI’s Carver College of Medicine, often treats patients with laryngeal dystonia. He shared that dystonia is a broad condition, and the treatment differs with each case.

“One dystonia is not the same as another dystonia. There are some familial dystonias, there’s some that affect the whole body, [and] some affect just the lips or affect the larynx — the treatment for them is different,” Hoffman said.

Treatment depends on the symptoms and location of the dystonia but ranges from behavioral to oral therapy, dental splints, medication, botox injections, or surgery.

In a protocol page published by Hoffman as part of a weekly series called “Music and Medicine on Monday,” he described music dystonia as having a higher prevalence with age, primarily affecting those who begin playing late in life and have longer cumulative practice times, higher workloads, and perfectionistic tendencies.

“If you have neuroplasticity, that is essentially rewiring your brain by over-practicing and putting your lips into an unusual position [for] hours [or] years,” Hoffman said. “That’s when you can rewire your brain to something that’s nonproductive.”

Allen attributes his onset of symptoms to his anxieties, saying the more he focused on his deteriorating embouchure, the worse it became.

“I freaked out about it and tried to overcorrect and tighten certain muscles and started playing wrong,” Allen said.

When his symptoms first began as a twitch in his lower lip, the first few words of advice he received were to keep it a secret. He was warned that even if he recovered, no one would want to offer work to someone who couldn’t play their instrument.

Allen reached out to the few people in the music industry with experience treating musician’s dystonia. He spent thousands of dollars on lessons from a few teachers, only to make little progress. Finally, he had a breakthrough after finding an online program from Joaquin Farias, a focal dystonia specialist.

In an effort to be more open about his condition, Allen began disclosing to his graduate students why he wouldn’t be able to demonstrate in class and his experience with musician’s dystonia. That’s when one of his students, John Reyna, perked up.

In 2020, Reyna was preparing for his final two recitals while studying tuba performance at the University of North Carolina Greensboro when he began experiencing symptoms of embouchure dystonia.

“All of a sudden, I just started to have [lip] tremors that were uncontrollable,” Reyna said.

There, Reyna’s instructor recognized the dystonia and asked what he would do if he could no longer play.

“I did not know. I had nothing. I just wanted to play tuba,” Reyna said, recalling his answer to his instructor’s question.

Reyna took behavioral changes to work around his condition; he cut a section of music from his recital and avoided music in the upper range. He had some improvement when he used a larger mouthpiece on his instrument.

Still, he had few solutions for what he was experiencing and even fewer ways to navigate his symptoms.

While auditioning for graduate programs, Reyna continued to struggle with dystonia but kept the condition to himself, afraid the schools he auditioned for might doubt his future as a musician.

“I didn’t know where [my ability] was going, and if [the dystonia] was going to get worse,” Reyna said.

His outlook on his condition was suddenly uplifted when, at the beginning of his master’s program at the UI, Reyna sat in Allen’s classroom and heard his instructor speak of his own experience with embouchure dystonia. Encouraged by Allen’s recovery, Reyna asked to meet and talk about his symptoms.

Allen gave Reyna breathing exercises and hope. Almost immediately, Reyna’s symptoms began disappearing. However, with the condition’s pervasive nature, after a couple of years, Reyna felt a familiar tremor in his upper lip.

This time, however, Reyna was prepared to face the symptoms. Returning to his breathing exercises has allowed him the skills to work around his symptoms. However, the condition is still bothersome for Reyna and his career goals; to this day, the condition remains taboo in the music industry.

“It’s the Boogeyman. If they have it, they don’t want to talk about it because they could lose a gig,” Reyna said.

Still, Reyna is open about his experiences as an example of an accomplished, capable musician with dystonia.

Allen believes it is his responsibility as an instructor with dystonia to speak openly about the condition so more musicians and students recognize that it is not a death sentence.

Allen’s experience with dystonia has provided many students with a new, knowledgeable resource they might not have had otherwise.

“The world is increasingly anxious,” Allen said. “We are only going to see a continuing increase of these types of disorders.”