One of the most overlooked symptoms experienced by people living with dystonia is difficulty breathing. I’ve worked with thousands of patients diagnosed with dystonia, and I can confidently say that breathing problems are far more common than most people—including clinicians—realize.
Whether you’ve been diagnosed with cervical dystonia, blepharospasm, laryngeal dystonia, spasmodic dysphonia, oromandibular dystonia, or even leg or hand dystonia, it is not unusual to experience shortness of breath, spasms in the diaphragm, or tightness in the intercostal (rib) muscles. In many cases, patients also present with a stiff spine, limiting thoracic and abdominal movement—critical for healthy respiration.
In the following sections, I’ll explain the main mechanisms behind these breathing issues and share how we approach their rehabilitation in our program.
1. Diaphragm Spasms in Dystonia
The diaphragm is our main breathing muscle. When it contracts rhythmically and fully, it creates the negative pressure needed for air to enter the lungs. In many of my patients, this muscle does not move freely. Instead, it spasms—contracting unexpectedly or remaining tense, which can feel like shortness of breath or even like the air “gets stuck.”
These spasms can result from direct involvement of dystonia in the diaphragm (a form of segmental dystonia) or from compensatory overuse due to poor coordination in other muscle groups.
A study presented at the American Academy of Neurology (AAN) found that patients with dystonia may experience diaphragmatic dystonia resulting in breathing dysfunction, often unrecognized in clinical assessments.
Neurology® AAN Abstract
Health implications include:
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Fatigue from inefficient breathing
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Chest tightness or “air hunger”
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Disrupted sleep patterns (including apnea-like symptoms)
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Headaches or migraines from altered oxygenation
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Increased anxiety due to irregular breathing patterns
2. Abdominal-Diaphragmatic Decoupling
In healthy breathing, the diaphragm and abdominal muscles work in perfect synchronization. When the diaphragm moves down, the abdomen naturally expands to allow for lung inflation.
However, in relation to this specific manifestation of dystonia—respiratory dysfunction—approximately 70% of the 4,000 patients I have studied exhibit a marked lack of coordination between diaphragmatic and abdominal muscle activity. In many cases, the abdominal wall contracts paradoxically as the diaphragm descends, or both regions engage simultaneously, resulting in shallow, inefficient respiratory patterns.
A study in Chest Journal identified poor thoracoabdominal coupling and abnormal vocal fold patterns in patients with dystonia-related dyspnea—contributing to inefficient respiratory mechanics.
ScienceDirect – Dyspnea in Dystonia
This dysfunction can lead to:
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Poor oxygen delivery and circulation
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Digestive discomfort from compressed organs
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Excessive use of neck and shoulder muscles during breathing
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Difficulty speaking or maintaining vocal tone
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General postural compensation that aggravates dystonia elsewhere
3. Dyspnea: Chronic Shortness of Breath in Dystonia
“Dyspnea” is the medical term for shortness of breath, but most patients don’t use this term when searching online. Instead, they describe their experience as:
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“I can’t get a full breath”
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“My chest feels tight”
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“It feels like I’m breathing through a straw”
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“I get out of breath just sitting still”
In dystonia, dyspnea can result from multiple overlapping causes:
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Spasmodic narrowing of the upper airways (as in spasmodic dysphonia)
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Vocal cord dysfunction (as in laryngeal dystonia)
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Abnormal respiratory rhythms due to central dysregulation
A foundational study described upper airway obstruction as a cause of dyspnea in dystonia patients, highlighting the multifactorial origins of breathing difficulties.
PubMed – Upper Airway Obstruction in Dystonia
Sometimes the breathing difficulty is purely functional—a learned motor pattern that reinforces itself neurologically. The body forgets how to breathe efficiently, and this creates a cycle of tension, fear, fatigue, and more dystonia.
4. How We Re-Educate Breathing in Dystonia
At the Dystonia Recovery Program (DRP), we’ve developed a specialized breathing rehabilitation protocol designed specifically for people with dystonia.
Our approach addresses:
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Diaphragm relaxation and retraining
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Abdominal expansion and pelvic floor coordination
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Intercostal (ribcage) mobility
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Cervical and thoracic spine mobility
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Vocal flow and resonance training
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Nervous system calming through breath pacing
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Emotional regulation through interoceptive awareness
Our experience shows that rehabilitating the breath is often the missing piece in dystonia recovery—improving not only movement but also fatigue, voice, posture, and overall resilience.
If you experience difficulty breathing and have dystonia, I encourage you to join our comprehensive Breathing Class. It’s designed to help you regain confidence in your breath, improve postural integration, and reduce many of the secondary symptoms like fatigue, migraines, and voice changes that stem from dysfunctional breathing.
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Disclaimer
This article is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare provider before starting any treatment or exercise program.