Dystonia and Sensory Sensitivity. An Alternate Reality

Kim Amburgey

Sensory sensitivity, an intensified response to everyday stimuli, becomes a significant challenge for those living with dystonia. Beyond the visible spasms and tremors, individuals with dystonia often contend with heightened reactions to sounds, smells, and tactile input. In this exploration, we delve into the intricate connection between sensory sensitivity and dystonia, understanding its impact on daily life, relationships, and cognitive functions.

What is sensory sensitivity?

Sensory sensitivity is when our senses, or our brains’ reaction to incoming information from our senses, is more intense than what is considered normal.

It can feel like a continual assault of what most would consider everyday sounds, smells, sights or tactile input. For a person with sensory overwhelm, this input is often unpleasant to the point of disrupting their ability to function or think normally. They are so overwhelmed with the sensations, they cannot rest until the source of the disturbance is eradicated, which often is not possible.

What does sensory sensitivity have to do with dystonia?

Dystonia is far more than just spasms and tremors and includes many non-motor symptoms.  However, there can be other reasons for sensory overwhelm so a thorough work up from your physician or psychologist is necessary. What we are discussing here is sensory sensitivity as it can tie into dystonia (which will still necessitate followups with your medical team).

Neuroscientist Joaquin Farias has noted that those with dystonia also present with dysautonomia, their autonomic nervous system (ANS) is functioning, but not well. The ANS includes a sympathetic branch (SNS) in charge of things like anticipating, reacting and mobilising (referred to as fight/flight) and the parasympathetic branch (PNS) in charge of relaxation and digestion (and enables us to feel safe and social).

In dystonia, the PNS is undermined, which will cause an uninhibited SNS.  We can not shut down the hyper-vigilant SNS as it scans the environment – with heightened senses anticipating or preparing a need to react quickly.

When you consider all of the processes that happen beyond our conscious control through the ANS, like breathing, circulation, and the receiving and processing of sensory information (visual, audio, taste, smell, things we touch or touch us), it is no wonder those with a poorly functioning ANS (as in dystonia) can have issues with sensory overwhelm.

Dr. Farias has also noted that dysautonomia was present in his clients days, months or even decades prior to the first sign of motor problems from dystonia. This falls in line with many patients who say they have had a tendency towards sensitivity their entire lives, or for many years.

What does sensory sensitivity feel like?

I’d describe it as living in an alternate reality from those with healthy sensory processing. Imagine suddenly hearing a leaf blower outside, it’s startling and annoying but if your ANS is functioning normally you can quickly calm down and accept it as part of life. Those with overwhelm are not able to let it go, and their initial reaction to the noise is much more intense than what would be normal. It could take 20 minutes to get back to a calm state, but before that can happen, a woman sits next to you with enough perfume to ‘stink up’ the entire room… or so it seems to you… others are not bothered by it. They may notice it, but they can assimilate the smell and let it go, whereas you might develop nausea and a headache and then find yourself angered by what you perceive as her unbelievable rudeness.

Or imagine you are hiking with friends, mosquitoes are biting all – but you feel like every bite is a personal assault, beyond just a normal pinprick, it seems your very being is under attack in a proportion that is not commensurate with the actual mosquito bites. Friends start to feel you are quite the ‘delicate’ or ‘high maintenance’ creature, when in fact you always thought yourself a tough chick….. but that seems to have changed. Even you can’t deny you have become more sensitive.. but at the same time you are even more of a tough chick because you endure so much more than the average person, but persist anyway.

Sensory overwhelm can put us in an alternate reality

To those not affected, these may sound like minor issues, until you consider that our very senses are how we interpret the world, how we understand everything that is not us. When those senses are ‘over-sensitive’, we end up interpreting the outside world in a very skewed fashion. This can make us feel apart from or misunderstood by others and vice-versa.

This can affect our relationships, our ability to perform in the workplace, our desire to socialize. Sometimes we will share or complain about the issues, but after a period we will realize that others perceptions of us are becoming negative, so we often decide to keep the complaints to ourselves, realizing on some deep level that we are ostracizing ourselves from others, so best to keep quiet rather than be shunned. Or the exact opposite may happen, some of us will instead become quite vocal about the woman with the strong perfume, and use that anger as a reason to detach from more and more people, isolation can soon follow.

Another sense commonly discussed is called proprioception, or the ability to know where our body is in space. For those with dystonia, this sense can also be skewed. For some it’s due to muscular contractions forcing our body into unusual postures that make the world feel less balanced in relation to our body. Dr. Farias’s research of 1,000’s of dystonia patients has also found in almost every single case the patient has issues in how the eyes perform, in tracking, synchronization, peripheral and/or focusing which can further lead the brain to skew how we should posture ourselves. Having these visual deficits can add, or sometimes be the cause of a portion of our sensory overwhelm as it throws off our proprioception skills.

Can sensory overwhelm affect our ability to think?

Yes, it can. Imagine your brain trying to make sense of all the erroneously intensified information coming in and then trying to have a conversation, or perform a simple task – your mind is so preoccupied you stop being able to ‘think’ anything, you can become trapped in a vicious over stimulation-anxiety-tremor/spasm cycle.

Many will automatically close or avert their eyes to stem the flow of ‘incoming visual input’.  At a recent cardiologist visit, I noticed my own doctor did this when he was talking to me, I asked him why and he said, “It’s a bad habit, but it helps me think by diminishing sensory stimuli”.  I automatically felt a kinship with him, LOL.

So how can we help ourselves?

Trigger avoidance is a common (though impractical) method, for instance avoiding the store you know is crowded with people and brights lights, or when there wearing earbuds to muffle the noise and keeping your sunglasses on, or trying a preemptive strike by asking your mother-in-law to lay off the perfume when she comes over (but in fact it’s permeated till the end of time into her clothes anyway, even if she lays off for that outing….).

Some will be sure events they attend are not ‘open ended’.  When gathering with family or friends they suggest eating at a restaurant as there is usually a beginning and end, you can count on only having to be around the sensory stimuli for a certain amount of time and this can reduce anxiety, which in every case will escalate the symptoms.

Some tips for sensory sensitivity from Dr. Farias

Being a patient of Dr. Farias, I happened to be sitting with him in an office where there was much construction going on outside. I mentioned how distracting the sounds were and it made me tense, I felt some tremors coming on. He gave me advice on how to handle it, “Your body, in sympathetic overdrive, is tensing up from the stimuli before your thoughts even realize why. At this point you need to take a pause, relax your body and make a decision not to internalise the noise. You are currently bringing it inside you and letting it fester, which makes you anxious and aggravates your tremors. Instead, take a pause, relax your body, think of the noise and put it on a shelf in your mind. It is still there but you are deciding to put it into the background, instead of the foreground of your thoughts. Put it in the background, where it belongs”.

It was shocking to me how quickly this strategy helped. Once I made the decision to both accept the stimuli, but reject internalising it – the loud sounds or the visual maze of choices at the supermarket, the mosquito bites, all faded to an acceptable level of tolerance. This mind training teaches us how to receive the information and not be negatively affected by it anymore. The only exception for me was smells, however with additional training as discussed in the next section, this sense too has been normalised.

Pause, relax, acknowledge but take the offending stimuli and put it in the background. This is how ‘normal’ people perceive the same stimuli – their brain automatically puts it in the background, but we need to do the extra step of consciously putting it in the background until our ANS is balanced enough to do it automatically again.

How do we help the ANS to do this automatically again?

Aside from exercises to return normal function to the movement pathways affected by dystonia, the Dystonia Recovery Program also has a wide variety of tools to provide balance to our nervous system to take us out of sympathetic nervous system overdrive.

I found Dr. Farias’s systemic approach wonderful to heal from the sensory overwhelm. Like so many issues that can come along with the dysautonomia portion of our dystonic condition; neuro-relaxation, eye tracking and balancing exercises, brain synchronisation techniques and brain/dystonic muscles neural circuit exercises are key to recovering normal function so we can again integrate environments that are filled with sensory stimuli. Over many months we can get our nervous system into better balance, which will then help the hypersensitivity. We get to the root of the issue and with daily effort, we can make remarkable improvements.

You will find many of the tips in the blog posts for Social Discomfort and Anxiety can also help with sensory overwhelm. Check them out for more suggestions.

Is there any upside in all this?

Yes! The silver lining is the flip side of the same hypersensitive coin. Many with dystonia will have a special appreciation of life’s beautiful sounds, sights, smells or sensations. Like a fragrant flower, stunning view, or a piece of music that can feel as if it’s stimulating our entire body. Interestingly for the hypersensitive, the fragrance of a natural flower can cause an opposite reaction from that of a chemically created perfume, the intricate mountain top view is soothing rather than triggering, certain sounds in music deeply move us rather than offend.

In the same way we can internalise a negative smell, we can do the same with a positive smell, vision or sound. We smell more deeply, see more intently, hear more crisply and this can create quite a high, a natural high. Most normal people will hear those sounds as part of the background and may appreciate some more than others, but for us it is a far more internalizing experience as it goes through our body in almost a euphoric way. To complete the silver lining, those I know who have successfully recovered a reasonable autonomic nervous system balance have been able to jettison the negative of sensory overwhelm and keep the positives of the sensory high.

An awesome silver lining!

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