One of the most frustrating things about suffering from dystonia and other related neurological conditions, is that many of us get misdiagnosed and mistreated for years; once we finally do get a correct diagnosis, we are told that there is no way of knowing why we developed the condition and no real way to get better. Nothing could be further from the truth.
What I am about to share applies to most people with dystonia and related painful spasms (e.g. those related to TMJ disorder). It does not apply to those who were pretty much born with a dystonic spasm, generally on a limb, those who have temporary dystonic symptoms because of a drug, and those who have secondary dystonia caused by other conditions (Parkinson's, multiple sclerosis, etc.). For all the rest of us, read carefully! This information is truly life-changing. It is based on existing research, insights by leaders in this domain, as well as my experience with my clients’ and my own recovery.
Dystonia is an emergent phenomenon: a number of causes produce it together, and individual causal factors are insufficient to explain it. Not all of these factors have to be present in each individual, although a majority usually are.
© 2022 Hope for Dystonia
The main causes of dystonia are:
A predisposition for neuroplasticity;
Dysfunctional anatomical or physical inputs;
Physical trauma and scars;
Heavy metal toxicity and certain viral infections.
Let’s go into each one of these in detail.
A predisposition for neuroplasticity
Neuroplasticity is the brain’s ability to adapt and shape itself based on given inputs. Those of us who are blessed with a plastic brain may have an easy time learning and adapting to new circumstances such as a new country. We may be gifted at languages, proficient in playing a musical instrument, and may easily switch from one career path to another.
Yet this predisposition for neuroplasticity also has a more challenging side: just as our brain adapts and changes according to ‘good’, functional inputs, it can also adapt to accommodate dysfunctional inputs. Dystonia is just that: a form of maladaptive neuroplasticity.
With most of the following causal factors, you’ll see how the dystonic brain adapts to a dysfunctional input. It does so in order to allow us to live with an injury, an anatomical imbalance, or to protect us from reliving a traumatic experience.
The good news is that just as the brain learns a maladaptive pattern, it can unlearn it and substitute it with a functional one (see ‘How to Recover’).
Dysfunctional anatomical or physical inputs
Many people with painful spasms and important imbalances in the body, whether they have a dystonia diagnosis or not, often have remarkably asymmetrical craniums. One side might be smaller than the other, one eye might be higher than the other, and the maxilla (upper arch) might sit in a crooked position. The sphenoid bone, the wing-shaped structure that connects the facial bones with the rest of the cranium, is often misaligned, as if pushed back on one side.
Such asymmetries cause a number of issues. First among them is that when the cranium is asymmetrical, the upper cervical vertebrae have to stack under an asymmetrical structure. This creates patterns of compensation that extend all the way to the toes. The shoulders and pelvis tilt up in all three planes (like the airplane in the image below), in order to allow the vertebrae to remain stacked underneath an asymmetrical cranium.
Image Credit: Wikimedia Commons.
This is not a stable homeostatic position, as it requires a significant amount of effort for the neuromuscular and vestibular systems to maintain equilibrium and even muscle tone despite the imbalance. It increases the likelihood, among other things, of a subluxation of the upper cervical vertebrae C1 and C2, potentially constricting the brainstem and contributing to neurological symptoms.
Temporomandibular joint (TMJ) disorder, or TMD
The cranium, the upper cervical vertebrae and the jaw constitute a single complex: each part helps maintain the entire body’s equilibrium together with the others. When one of these elements is challenged, the others may suffer. For this reason, asymmetries in the cranium increase the likelihood of temporomandibular joint (TMJ) disorders.
The temporomandibular joint is an extremely complex and delicate joint. The ends of the jaw bone, or condyles, sit in the fossa, a dip in the corresponding part of the cranium. Through that area pass numerous crucial cranial nerves, which are fundamental parts of the nervous system and crucial in understanding and rehabilitating dystonia (subscribe to the newsletter at the bottom of the Hope for Dystonia homepage to be notified of a future blog post on cranial nerves).
Depending on how the condyles sit in the fossa, cranial nerves on either side of the head may receive more or less pressure and therefore be stimulated more or less. This simple dynamic can cause a myriad of neurological symptoms, including oromandibular, cervical and generalized dystonia.
The reason for this is that the cranial nerves are at the heart of how our brain perceives the world and our place in it: sight, smell, hearing and taste center around cranial nerves; the tenth cranial nerve, or vagus nerve, performs a huge range of tasks, from regulating autonomic functions like heart rate, digestion and breathing to helping us perceive safety around us, as we learn from polyvagal theory.
What happens, for example, when the right branch of the vagus nerve is more stimulated than the left one, because of the way the condyle sits in the fossa on that side? The answer is a cascade of supposedly ‘mysterious’ neurological symptoms: the soft palate is tighter on the right side, there might be difficulty speaking (dysphonia), digestion might be impaired, and a pervasive sense of instability and lack of safety may predominate.
As another example, when the eleventh cranial nerve is affected, its ability to symmetrically innervate the muscles of the neck is impaired, and visible cervical dystonia may develop.
Lastly, it is important to note that an imbalance in the temporomandibular joints can in and of itself cause a subluxation (misalignment) of C1 and C2, adding another source of stress to the brainstem.
The temporomandibular joints might be imbalanced because of asymmetrical dental wear, missing teeth, short-sighted orthodontic interventions and much more. Whatever the reason, the implications of TMJ disorder for the health of the nervous system are hard to overstate.
The condyles are of course not the only potential source of pressure on nerves. Enlarged lymph nodes in the neck sometimes apply pressure on certain cranial nerves causing dysphonia and cervical dystonia. This is just one of many examples of physical pressure on, and consequent stimulation of the nerves. As we’ll see below, scars can put pressure on nerves as well.
Physical trauma and scars
Physical trauma is never purely physical, as we are not purely physical beings: there is always a component of fear, grief or stored trauma. Both physical and emotional components of trauma exist in the same place: our nervous system.
Physical trauma can take many forms: injury from an accident, surgery, dental interventions, assault, and more. The consequences of such wounding can be more or less evident. Some of these injuries may leave scars in the body: tissue that can pull muscles, press nerves, and send all kinds of confusing messages to the central nervous system.
When such impactful scarring is present, the brain can find itself forced to adapt and accommodate the new inputs. For instance, if a scar from a difficult childbirth is pulling the left leg inwards, a woman may find herself twisting as she walks, pulled by dystonic spasms. The rest of the body will compensate in order to allow this new way of moving and being in the body, resulting in potentially far-reaching and debilitating symptoms.
There can be less visible consequences of physical wounding as well, such as lingering infections, swollen lymph nodes, internal scarring, and more; all of these can potentially impact the nervous system and start a process of maladaptive neuroplasticity.
One last important category of injuries to mention: those which affect the upper cervical vertebrae and force them out of alignment, often with torn ligaments. These can happen as a result of falls, accidents, bad manual adjustments by healthcare practitioners, and more. As mentioned before, the upper cervical vertebrae, the cranium and the jaw constitute one complex system; when one element is out of alignment, the others compensate. This can cause stress to the brainstem which finds squeezed by misaligned vertebrae, causing neurological symptoms.
I have already written in detail about trauma and dystonia, so I invite you to check out that article as well.
“Emotional” or “psychological” trauma is not an abstract thing: it very much exists in our bodies, stored in our nervous systems. In other words, “your issues are in your tissues”.
Trauma is the kind of wounding resulting from overwhelming stress of the nervous system. It is the adaptation that occurs in the mind-body as a result of the event, rather than the event itself. This adaptation can, when enough co-causal factors are present, result in the kind of maladaptive neuroplasticity we call dystonia.
Some cases of dystonia where trauma is a causal factor are quite obvious: a part of the body is directly affected in a traumatic event; the nervous system feels too overwhelmed to cope with what happened, and shuts down access to that part of the body. Or instead, someone is assaulted but never gets a chance to fight back: that fight-or-flight, sympathetic energy never gets a chance to be released, and the person is stuck with painful spasms in the arms and the chest. As time goes by, further adaptations develop and the body falls progressively out of alignment.
In other cases such as Complex PTSD (CPTSD) it is a fundamental lack of safety, a dearth of connection and a feeble sense of self-worth that cause a constant dysregulation of the nervous system over time. In some of these cases, an individual might have a hard time perceiving their psychological and psychic boundaries, and this may be translated into constant involuntary movements in the face, neck and hands, as if the brain was looking for the body’s physical boundaries. In other words, if I have learned as a child that in order to be safe and loved I have to collapse in front of others, forget about my own needs and just submit to a stronger figure in the family, I may have a hard time not only expressing my needs and boundaries as an adult: my brain may actually have a hard time finding my body.
Here’s an important nuance to add: when nervous system dysregulation from trauma happens to someone with anatomical imbalances (e.g. malocclusion, asymmetrical cranium, etc.), the trauma responses of fight, flight, and freeze may coexist at the same time in different parts of the body, resulting in dystonic symptoms.
As an example, in someone with an open bite on the left side of the mouth, the right side of the body may be stuck in hypertonic spasms and sympathetic overdrive (fight response), while the left side may be hypotonic and shut down (freeze response). To an external observer, this may look like ‘idiopathic dystonia’ with no known cause and no hope for recovery. Nothing could be further from the truth: there is hope, and I am living proof of it. Yes, there is hope for you too: head over to 'How to Recover' and book a free consultation session (C$10 deposit) to get started.
Repetitive movements can be quite intentional, like in the case of a musician playing his instrument, or automatic and subconscious, like the case of someone with oromandibular dysfunction who develops a tongue thrust in order to find stability.
Whatever the origin of the movement, if it is repeated enough times, the brain will read it as an input around which to adapt. If I contract my vocal cords and engage my diaphragm for twelve hours a day as I play the french horn, my brain might learn that this is how things should always be, and I may have a hard time controlling these parts of my body. Similarly, if I always chew and engage my muscles on the right side of my face but never on the left, my brain might learn that the right side needs to ‘steal’ all of the electricity that normally travels on the left side, and I might have a hard time engaging my jaw on the left over time.
Heavy metal toxicity and certain viral infections
Dystonia is generally understood as being mostly a dysfunction in how the brain uses the muscles, rather than a question of sclerosis or damage to the nervous system. In my experience, both factors actually play a role.
The damage to the nervous system appears to be caused by heavy metal toxicity (we are constantly exposed to them in our modern lives) and by certain viral infections, such as the Epstein-Barr Virus (EBV). Both factors are increasingly being explored as contributing to other neurological conditions such as amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). The theory is that the heavy metals stimulate the viruses to further entrench themselves and attack the body.
This damage prevents the nervous system from communicating properly, causing neurological symptoms and raising the possibility of further maladaptive neuroplasticity as the body learns to avoid damaged areas.
I have personally witnessed the enormously transformative power of gentle heavy metal cleanses and immune-supportive lifestyle changes in promoting healing. When done properly, gradually and using common foods rather than medication, cleansing can be one of the most effective interventions in supporting recovery.
Dystonia is not a life sentence: there is a way out. What does not exist is a magic pill or a miracle worker that will make it go away for you. It is a whole-person disorder, and as such it requires a holistic approach that addresses each one of the facets mentioned above. Dystonia recovery is, first and foremost, a journey of personal growth.
It requires an attitude of personal leadership, since you are being called to rebuild your body and reorganize your psyche, and no-one can do it for you. You’ll need courage and perseverance: the courage to look at your shadow side, and the ways in which your coping mechanisms produce illness, or the ways in which your illness serves you, perhaps by getting you out of situations in which you can’t say “no”. Perseverance will be crucial when you begin to face the inevitable ups and downs of the recovery process, and may be tempted to give up.
Throughout it all, you’ll perhaps learn to relate to yourself with compassion, to accept and love the life you have, and connect to the large space of loving awareness that is the grounds of our Being. If your dystonia could speak to you, it would probably say something like this:
“[...] I implore you. I am a messenger with good news, as disturbing as I can be at times. I am wanting to guide you back to those tender places in yourself, the place where you can hold yourself with compassion and honesty. [...]
I am your friend, not your enemy. I belong. I have no desire to bring pain and suffering into your life. I'm simply tugging at your sleeve, too long immune to gentle nudges. I desire for you to allow me to speak to you in a way that enlivens your higher instincts for self-care. My charge is to energize you, to listen to me with the sensitive ear and heart of a mother attending to her precious baby.
You are being so vast, so complex with amazing capacities for self-regulation and healing. Let me be one of the harbingers that lead you to the mysterious core of your being, where insight and wisdom are naturally available when called upon with a sincere heart.” - (Anonymous)
Hope for Dystonia coaching is here to help you make sense of the complexities of your recovery journey, and to cheer you on when the going gets tough. If you’re truly ready to put in the work, I would love to hear from you. I invite you to book your free consultation here.
Until then, I wish you joy and wholeness of body and spirit.
Hope for Dystonia
Hope for Dystonia is a coaching service and not a medical treatment. As such, it is not intended to diagnose, treat or cure any disease. Federico is not a medical professional. None of the content in the website should be construed as medical advice.
Hope for Dystonia is an active process of self-discovery and change carried out by each person: nothing is done to you; rather, everything is done by you.