Childhood Trauma Revisited: Are ACEs the Cause of Primary Dystonia?

Kim Amburgey

Adverse Childhood Experiences (ACEs) are traumatic events that occur in a child's household or community environment. ACEs can include neglect, abuse, mental health or substance abuse issues of guardians, or living in a community environment of violence or ostracism. ACEs are thought to change brain development and affect how the body responds to stress. ACEs are also implicated in health issues that unfurl decades after the traumas.

What are ACEs?

Adverse Childhood Experiences (ACEs) are traumatic events that occur in a child’s household or community environment. ACEs can include neglect, abuse, mental health or substance abuse issues of guardians, or living in a community environment of violence or ostracism. ACEs are thought to change brain development and affect how the body responds to stress. ACEs are also implicated in health issues that unfurl decades after the traumas.

It is an explosive topic, ACEs and health issues, and some in the dystonia field are wondering about potential connections.  Neuroscientist Joaquin Farias writes, “It is plausible that adverse childhood experiences could play a role in the genesis of focal dystonia.”

It is explosive for many scientific reasons, but also on a more personal level for each patient in how it makes us feel: anger (wanting those responsible to pay), shame (did I somehow bring the abuse upon myself?), hopelessness (how can we possibly surmount yet another challenge), self-pity (life isn’t fair, why me?), validation (I suspected as much), sadness (my life could have been so different had this situation not happened) uncertainty (I don’t recall anything bad happening, perhaps I am mistaken?).

A few anecdotal stories for you to consider. From personal friends who have dystonia.

“Leslie” as a child was slapped in the face by her father, always on the right side. She could predict the slap was coming and would try to numb herself in thought and body. Some 30 years later, she developed a left-turning cervical dystonia.

“Mark” was continually bullied in school as a child, being a shy kid he did not fight back and clearly remembers during these confrontations losing the ability to speak. Some 20 years later, he developed spasmodic dysphonia.

“Janice” as a child would hide in the closet with her siblings when her parents would fight, so terrified she would squeeze closed her eyes, not opening them until the fighting was over. She developed Blepharospasm 55 years later.

“Dan” as a child had a dominating and punitive mother that was difficult for him to handle.  He would wildly run, run, run long distances from home to hide out, escaping the interaction.  He developed Runner’s Leg Dystonia approx 35 years later.

“Isabella” was sexually molested as a child at the tender age of 7.  She clearly remembers being in the neighbor’s house, on a bed and regularly turning her head all the way to the right to avoid looking at her perpetrator. After 45 years, her first signs of right turning torticollis began.

How Could That Have Turned Into a Dystonia?

Dysautonomia (autonomic nervous system dysregulation), theorized to be present, or a predisposition present at birth can be revealed by things like illness, trauma to the body or emotional upset, and is thought to be triggered or exacerbated by ACEs.  This begins or intensifies a life of constantly being ‘on guard’, living in a body that is always searching for danger, incapable of relaxing, a ptsd of sorts. The body being in a constant stress response may set the stage for a dystonia to be triggered one day.

Although the exact pathway from ACE to dystonia is not clearly defined, perhaps the stress response during a childhood event somehow combined with a region of the brain that initiates or inhibits movement. You can almost picture during the trauma, the emotional stress was so intense, the brain tried to ‘disengage’ at the same time the movements were made. A split-second in time created a sort of stress-muscle-neural circuit deficit that could remain weak but dormant, until another acute physical or emotional stress period weakened the circuit to a degree it became an observable dystonia.

Or perhaps that weakened neural pathway or brain region was already in existence at the age of the child who had the ACE, and this is why when stressed to an extreme degree the boy could not speak, two girls would be compelled to turn a certain way, one boy would have an unexplained urge to run and yet another would innately choose closing the eyes as a way to disengage from the trauma.

So is that proof that ACEs are the sole cause of Dystonia?

Unlikely ACEs are the sole cause, as Dr. Farias mentions, they could “play a role in the genesis”.

If you consider that siblings in the same dysfunctional household, or children in the same community scenario of violence do not all grow up to have dystonia, it would stand to reason it’s not a simple cause and effect theory.

Some children are born with a constitution, an innate resilience that enables them to endure external stress or trauma, but internalise it less than another more sensitive child who endures the same exact external stress or trauma.  Perhaps within that sensitivity model lies a brain that is also more susceptible to react down the line to ACEs, in the form of mental or physical health issues, including dystonia.

Since not all children are affected in the same way (according to the ACE theory), but can grow up to have other health issues, perhaps there is something inherently different about the brain of a child who develops dystonia later on in life.  A chink in the armour, a neural connection that isn’t as strong or well-defined, that might come out regardless of whether there has been an ACE or not.

We have to remember there are plenty of people with primary dystonia who do not consider themselves having been subject to anything untoward in childhood.  They developed a primary dystonia in the absence of any ACEs.

It means there are likely other factors contributing to the onset of dystonia, but I suspect all will agree, ACEs couldn’t have helped the situation any, wouldn’t have lessened the odds of a dystonia developing.

Dr. Farias goes into what science has discovered in regard to the source of dystonia, including the current science of ACEs, in a post link attached below, “Dystonias Journey”. It helps us understand the many complexities in trying to determine the cause of dystonia.

Now what?  Where do we go from here?

So here we are, often physically exhausted with all sorts of unpleasant body movements, sometimes physical pain, insomnia, and a host of other symptoms, and now we have to consider our childhood trauma as being a potential contributor to this overwhelming affliction. To add insult to injury, do we have to look back at sometimes painful memories? Maybe yes, maybe no.

Some of us can function without revisiting, we can acknowledge intellectually ACE may have played a part in our developing dystonia or other health issues, perhaps feel a resurgence of emotions for a short bit but we move on, working towards recovering physical function lost to dystonia and dysautonomia. Maybe we had already come to terms with childhood trauma, and even with the realization that it may be involved in our health today, we can assimilate this knowledge without too much upset.  We can look forward in a positive manner.

Some of us will be very upset about this notion.  It will bring up some long buried issues from the past and we will need to revisit so we can expel any languishing emotional issues that are due to the ACEs, as deep unresolved emotional trauma can also trigger our dystonic symptoms as well as keep us entrenched in psychological distress such as depression or anxiety.  We must reach out for the appropriate psychological counsel to start the process of integrating all that we were as children, into all that we are today.

What Else Can I Do to Help Myself?

We can build up our resilience throughout our life, strengthening our very constitution, and close relationships are a powerful way to do that. We are every bit a pack animal and need some sort of interaction with others to feel a sense of safety and normalcy. Many people I know with dystonia are introverts and prefer it, but they still have a few connections to keep them from total isolation, adding that extra layer of resilience to their own strength felt in introversion.

Recent research also suggests that for adults, practicing the arts (lets say a ceramics class, learning to paint or singing in a choir), yoga or qigong type slow body movements, mindfulness training such as meditation, or regularly hearing sounds akin to Tibetan singing bowls or specially engineered therapeutic music or binaural beats can help restore proper autonomic nervous system balance lost to or exacerbated by ACEs.

Throughout the years I’ve had dystonia, and the decades I’ve had (in many of them unbeknownst to me) dysautonomia, one of the biggest things that kept me functioning as a somewhat normal being was learning about ACEs, addressing their emotional impact, and most importantly recognizing that ACEs did not define my destiny. They may play a big part in our past and what brought us to this point, but we can learn to acknowledge the traumatic experience and leave it in the past where it belongs.

Awareness there could be an issue is the key, addressing it opens the door to thrive.

Let’s get started!

Kim Amburgey