What causes dystonia, really?

© 2022 Hope for Dystonia

One of the most frustrating parts of navigating dystonia and related neurological conditions is the experience of being misdiagnosed or mistreated for years. And when a diagnosis finally arrives, many of us are told that there’s no clear cause—and no real way forward. But that narrative doesn’t match what many people have experienced, including myself.

What follows applies to many people dealing with dystonia and painful spasms (e.g., those linked to TMJ dysfunction), but may not apply to individuals with congenital forms of dystonia, drug-induced temporary symptoms, or those with secondary dystonia from other conditions like Parkinson’s or MS. If you’re outside those categories—read on. This may shift the way you understand your body.

These insights are based on research, the work of thought leaders in the field, and my own lived experience—both personal and professional.

Dystonia as an Emergent Phenomenon

Dystonia is not usually caused by one isolated issue. Instead, it tends to emerge from a convergence of several factors—structural, environmental, emotional, and neurological. Most people I work with don’t have just one cause; they have a pattern, an ecology of inputs the nervous system has adapted to in increasingly maladaptive ways.

Primary Contributors

• A predisposition for neuroplasticity

• Dysfunctional anatomical or physical inputs (including TMJ and cranial asymmetry)

• Physical trauma and scarring

• Psychological and developmental trauma

• Repetitive movement patterns

• Heavy metal toxicity and certain viral infections

Let’s explore each in more detail.

Neuroplasticity Gone Awry

Neuroplasticity is the brain’s ability to rewire itself based on input. While this trait can support learning, creativity, and resilience, it also means the brain can reinforce dysfunctional patterns. Dystonia may emerge from such maladaptive wiring. The encouraging part? Neuroplasticity also means change is possible. With the right inputs and attention, new patterns can be learned.

Structural Imbalances: Cranium, TMJ, and Spine

This is where things get particularly interesting. In my experience—and that of many clients—painful dystonic symptoms often correlate with significant cranial asymmetry. One eye may sit higher, one cheekbone may be less prominent, or the maxilla may be rotated, with downstream effects on the cervical spine and even the pelvis.

The cranium doesn’t exist in isolation. The sphenoid bone (that wing-like keystone bone connecting much of the skull) may be torqued, shifting the whole system. When this occurs, the first cervical vertebrae (C1 and C2) often have to compensate—leading to a stacking problem that travels all the way down to the feet.

This creates subtle but profound distortions in posture and equilibrium. The vestibular and neuromuscular systems must work overtime to maintain balance, often leading to visible and invisible compensations. Over time, this may create symptoms typically labeled as idiopathic dystonia.

Then there’s the temporomandibular joint (TMJ), which sits at the heart of this system. It’s not just a hinge—it’s a nerve-dense, highly sensitive gateway into the cranial vault. The position of the condyles (the ends of the jawbone) in the fossa can determine how pressure is distributed across the cranial nerves. Depending on how the condyles sit, the vagus nerve may be chronically overstimulated on one side and under-engaged on the other.

This imbalance can affect not only digestion, speech, and breathing, but the basic sense of safety in the body. Polyvagal theory has helped illuminate how these pathways contribute to physiological regulation, and when the system is off, people may experience a subtle but persistent sense of threat or unease.

Cranial nerve XI, which innervates the sternocleidomastoid and trapezius muscles, is particularly relevant to cervical dystonia. A misaligned TMJ or compressed cranial base can create asymmetrical engagement in these muscles, resulting in visible head-turning patterns.

I’ve also seen imbalances arise from past orthodontic work, extractions, asymmetrical dental wear, and even chronic tongue thrusting. These factors may sound small, but over time, they can shape the way the entire head sits on the spine—and how the nervous system processes that.

The image below shows the three dimensions in which the jaw can become misaligned. As we heal, we learn to listen to the nervous system as it guides us to the most optimal position in these three dimensions.

Image Credit: Wikimedia Commons.

Physical Trauma and Scarring

Physical trauma leaves behind more than tissue damage. Scars can tug on fascia, create focal points of tension, and apply unpredictable pressure on nerves. Whether it’s from surgery, childbirth, dental procedures, or accidents, scarring communicates with the nervous system constantly. Some scars become hotbeds for maladaptive inputs that shape posture, movement, and sensation.

And trauma isn’t just mechanical—it carries emotion. A difficult surgery or injury is often encoded in the nervous system with associated fear, helplessness, or dissociation. The resulting adaptations are not just structural but deeply protective.

Psychological and Developmental Trauma

Many people with dystonia have nervous systems shaped by early developmental trauma—lack of attunement, emotional neglect, or environments where collapse or vigilance became default modes. This isn’t psychological in the dismissive sense; it’s deeply somatic.

The body may twist or brace in response to emotions that couldn’t be expressed, boundaries that were never allowed. I’ve seen cases where the body literally reflects unresolved attachment dynamics—where one side shuts down in freeze while the other compensates in sympathetic overdrive. When paired with anatomical asymmetries, this can produce symptoms that seem baffling to conventional neurology.

Repetitive Movement Patterns

Musicians, athletes, even chronic jaw-clenchers—repetitive movements teach the nervous system to overuse certain pathways. Over time, this can lead to neurological dominance patterns. One side of the face, jaw, or body becomes hyper-engaged, while the other becomes underused or inaccessible.

It’s not just about movement. It’s about how the brain allocates energy and attention. The brain adapts around these patterns—especially if there's already a structural or emotional predisposition underneath them.

Environmental Factors: Metals and Viruses

In some people, heavy metal accumulation or viral load (such as Epstein-Barr) may increase neuroinflammation and interfere with normal neurological signaling. These aren't causes in the simplistic sense—but they can be accelerants, especially when the system is already dysregulated. I’ve personally witnessed shifts from slow, gentle cleansing and immune support protocols that are food-based and non-medical.

A Whole-Person Framework

Dystonia is not a sentence—it’s an invitation. There is no magic cure, but there is a process. And that process is deeply personal. It asks you to become the primary steward of your own healing, to understand your body’s patterns, and to participate actively in change.

Recovery, as I’ve come to know it, is not about fixing what's broken. It’s about reclaiming presence, awareness, and coherence in the body. It’s about listening—to pain, to movement, to emotion—and learning what your system is asking for.

“I am your friend, not your enemy. I have no desire to bring pain... I am tugging at your sleeve, too long immune to gentle nudges... Let me be one of the harbingers that lead you to the mysterious core of your being...”

Excerpt from the Felt Sense Prayer (Anonymous)

If this resonates, and you’re ready to engage deeply with your own process, I invite you to book a consultation. Hope for Dystonia offers a structured, supportive coaching container to help you navigate your unique path.

Until then, may you feel held in the possibility of change.

Warmly,

Fede

Hope for Dystonia