Dystonia, Earworms, Tinnitus and Misophonia

Can Dystonia cause Earworms, Tinnitus and Misophonia?

The songs and sounds can be with you almost every waking moment, from the minute you wake up until you finally fall off to sleep at night.  This is way different from someone jokingly saying, “Oh I’ve got a song stuck in my head”, or “Occasionally I hear a ringing in my ear, but only once a month or so for some seconds”.  For us it is no joke as the tendencies are pervasive, we start to question what is happening to us.

Why is this happening?

Simply put, in dystonia our brain has lost the ability to ‘shut off’, to ‘relax and unwind’ as we have been thrust into sympathetic overdrive, which means the part of our nervous system in charge of a reactive response is now stuck in high gear and we have lost ability to get into a relaxation response, into a low gear. When in this state, songs we hear, sounds we experience, even thoughts we consider, can just keep looping as there is no relaxation response to turn the brain off, to stop them from becoming invasive and repetitive. They just keep going round and round.

Neuroscientist Joaquin Farias has observed a percentage of his clients suffer from these various conditions, and that in many cases the earworms, misophonia, or tinnitus was a sign of dysautonomia (nervous system dysregulation) that actually preceded for days, months or even years the first symptoms of movement irregularities (spasms and tremors, the classic signs of dystonia).

As one patient described, “I started feeling dizziness, insomnia, tinnitus – and 8 months later tremors and spasms began.”

Dr. Farias notes that, “It’s common that inefficient cortical inhibition triggers obsessive-compulsive episodes (43%) in dystonia patients.” : OCD can be tied with earworms.

Dr. Farias’s research shows that dysautonomia (which includes a high stress response) is present with dystonia.  Research indicates tinnitus can be tied to dysautonomia  , and misophonia includes a high stress response.

How can we help ourselves?

Why didn’t anyone explain the connection to dystonia before?

What can make these symptoms even more stressful for patients is not even realising they can be common among those with dystonia.  Perhaps we didn’t think to ask our neurologist as we felt it wasn’t related, or maybe we did and our doctor didn’t know it’s connection or was simply too overwhelmed with patients to discuss it in a meaningful way to assuage our fears and give us hope for resolution. Perhaps we were afraid to talk about it with anyone, as deep down we started to wonder if we were exhibiting signs of losing our mental faculties, we may have mentioned once or twice but were summarily told “it’s no big deal” or “everyone experiences them” – and then we went inward, deciding that we would run the risk of being ‘different’, so we instead kept these often terrifying symptoms to ourselves.

I don’t think anyone can realise just how disturbing these brain looping ‘noise’ symptoms are unless they experience a strong case of them first hand.  And when you combine it with the many other symptoms that occur with dystonia, it can be a very distressing time in our lives, sometimes even leading to work or relationship struggles.

Moving forward…

Regardless of how we all got to this place of understanding, the great news is we can return to a more normal nervous system state which can reduce or eliminate these various types of ‘brain noise’ so we can live more comfortably.

Dr. Farias’s recovery platform (DRP) has many exercises to stimulate the weak neural pathways involved in movement so we can move normally again, but also on the platform are a host of neuro-relaxation items and brain synchronization exercises that are extremely beneficial in calming down the overactive sympathetic nervous system so our brains can finally relax and let go of any looping ‘noise’.  Also included are video interviews with Professor Nada Ashkar from the Ontario College Traditional Chinese Medicine, for those who are interested in pursuing this healing path. One such video is on tinnitus with suggestions that include certain areas for acupuncture and herbal remedies.

Testimonials?

After learning from Dr. Farias, I personally was extremely relieved to understand these symptoms are often seen in dystonia patients, and I was even more relieved when his protocol enabled me to put these symptoms to rest. They only seldom will reemerge (though far less intensely), and interestingly what used to be a horrendous bit of torture is now a handy indicator for me that I may be ‘revving up’ to have a setback of both motor symptoms (spasms and tremors) and non-motor symptoms (sensory disturbances, brain noises, anxiety, dizziness, etc). I can then jump back into the many training tools on the DRP so as to nip any impending issues in the bud. Having recovered 95% of my function through Dr. Farias’s protocol gives me peace of mind that I can do it again when or if necessary.

A few personal practices I found very helpful for earworms –  put in earbuds and listen to very calming music, like new-age music or sounds of Tibetan singing bowls and chimes while meditating or doing chores. It helps to override songs with lyrics or fast paced songs to slower ones. Walking outside in nature helped the most, at first with the earbuds in, but then removing earbuds and instead tuning into sounds of nature, like birds chirping, leaves rustling.  Walking outdoors turned into an earworm-free zone, no surprise as being in nature is known as a calming influence on the nervous system.

For misophonia, once I learned what was happening and why, after successfully ending (through the DRP) this maddening issue, I could only apologise profusely to my husband for complaining about how he chewed (normally, but didn’t sound that way to me when misophonia was present), and to top it off, the way he breathed. The poor man couldn’t even breathe without me commenting on how loud it was (it wasn’t, it was my hearing, my reaction).  My husband’s a good egg and was very patient, and I’d like to think I’ve since made it up to him, but just to be safe: Hun, I’m sorry.  🙂

For the rest of us, we have a way forward!

Let’s get started!!

Dystonia and Sensory Sensitivity. An Alternate Reality

What is sensory sensitivity?

What does sensory sensitivity have to do with dystonia?

What does sensory sensitivity feel like?

Sensory overwhelm can put us in an alternate reality

Can sensory overwhelm affect our ability to think?

So how can we help ourselves?

Childhood Trauma Revisited: Are adverse childhood experiences the cause of primary dystonia?

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.

Now what?  Where do we go from here?

 

Social Discomfort and Dystonia

For some of us, a fear or discomfort when speaking or being observed, engaging with another or a group can become very pronounced after developing dystonia – and not just because our movement irregularities feel embarrassing – but because psychological and emotional issues are often comorbid with dystonia.

Dystonia can cause an imbalance in the emotional centres of our brain and some unwanted tendencies seem to suddenly become overwhelming – making those emotions now all-consuming for us. As a patient with dystonia, I will share what I’ve learned about the connection between dystonia and social anxiety.

Social discomfort in dystonia can show up as

A fear of being judged negatively by others.

Concern you will not perform up to your own and others’ expectations.

Little patience for others’ input if it doesn’t interest you.

Over-eagerness to contribute your thoughts.

Fear of contributing as you may mess up.

Acute concern your dystonic symptoms will be noticeable.

And of course the “after engagement playback” that goes on in your head – hyper-focusing on how you appeared or performed.

We can also have pre-social-engagement anxiety – spending a lot of time prior in fear of the event.  This can cause us to become so overwhelmed, we avoid social gatherings all together unless it’s mandatory.

Please do not feel you are weak, that you somehow are responsible for these emotions

We are not weak and had no choice that this happened to us.  Something occurred in our brain that has increased our anxiety and fear response and is making these emotions more prominent – it’s not a conscious choice we make.

We can, however, try to help ourselves to slowly recover a sense of normalcy –  to stabilise our emotions along with our movements.

It is strongly recommended that anyone struggling seek assistance from a mental health professional.  If you have no one nearby, our Virtual Clinic includes Psychologist Joyce Lutgen, who is available for appointments.  She also has dystonia, so understands it from the inside-out.

“The first step every patient needs to go for is the reconnection with society.  Reconnecting with the environment and the life you had before the onset of dystonia”

The above quote from Neuroscientist Joaquin Farias during a Harvard talk on dystonia emphasises how important it is for us to start engaging again with others.

One of the best ways to get your social comfort level back is to put yourself into these situations a little bit at a time – each time you do you will become desensitised to it that much more.  To paraphrase Dr. Farias, “In dystonia, the brain is oversensitive and over-reactive…… we can tune-down the brain by exposure. Basically, you make the brain react and by repetition, it will naturally tune down into a normal response extinguishing the sensations produced by over-reactivity. The paradigm is simple – Being gradually and regularly exposed to triggers tunes down the response. Avoidance of exposure maintains the trigger as it is.  Little by little, day by day remarkable improvements can be achieved.”

Many want to wait to recover full or almost complete function before they step back into the world.  The truth is we need to step back into the world around us to enhance our recovery efforts.  We may not jump into exactly what we were doing before dystonia – it may be a modified version of what we did – but it will get us out of our own head that is often filled with anxiety and sadness from feeling isolated.  It will help us recognise that many of our fears of being in public are never realised and even if they are, so what?  So what if you were an anxious mess and your head was shaking or your jaw dropped open, or you didn’t perform well or your eyes slammed shut?  In the grand scheme of life, does it really matter?   If there are people who judge you negatively, do they really matter?  If you don’t feel acceptance from your friends or you are too stressed out at the workplace, maybe it’s time to consider a change to an environment that will embrace who you are today?

The likely scenario is that others who truly matter do accept you, but you have put too much pressure on yourself to look and feel as you did prior to dystonia.  Self acceptance and acknowledging who we are at this moment is a process and we all have to work on it.  We can find inspiration from others who have, like Maysoon Sayid or Michael Fox – who show us how to put yourself out there despite movement irregularities and to do so with grace, candor, humor, strength and fulfillment.

Allow, Accept, Change Focus, and Wait.  Self-directives for social functions

Allow the Symptoms:  One of the biggest triggers for an escalation of symptoms is our physical fighting or trying to restrict the spasms or tremors. Allowing the movements to occur for a short period can then allow a quieting down of those same movements. From Neuroscientist Joaquin Farias:

“As a general rule, we do not try to fight or forcefully control our spasms or tremors as it increases pain and slows recovery efforts. It can be uncomfortable getting through the day with this involuntary muscular activity, but this is often a necessary step to recovery as it allows the spasms to release to smaller spasms or tremors, getting smaller and smaller and eventually fading away. Fighting them inhibits this process.

This can be especially difficult when in public during social occasions or in the workplace, as our natural tendency is to want to control the spasms and tremors to avoid embarrassment or function in a certain way. We each do the best we can with what we feel warrants prioritization at that time, and we each also cope in the best way we can to avoid pain and discomfort.

For some people, the relaxing of spasms may trigger more intense spasms which can go on for long periods of time. If this is the case, you can allow the spasm to release but just for a minute or so, and then move your body to its most comfortable position.

Using sensory tricks is fine at any time, as there is no force. Over time as we reconnect our brain with our dystonic muscles and balance our nervous system, we will no longer need sensory tricks.​”

​Accept the Symptoms. It is a frustrating connection, but if you ask any person with dystonia they will tell you their symptoms can increase in direct proportion with their anxiety levels. While at the event, emotionally acknowledging that we are reacting to either the social or sensorial (lights, sounds, etc.) element, and making a conscious decision to accept this as ‘a phase I am in but working to recover from’, in essence accepting the anxiety as ‘it is what it is, for now’, can help us relax at the very event at which we are struggling. This will help to mitigate an escalation of symptoms from increasing stress levels, and at the same time help to lessen the ones we are having.

Change your focus away from the symptoms. The more we focus on our struggles, the more those same struggles will escalate. Take yourself out of your own head of “oh my gosh, I am having symptoms” to “the light display is beautiful, yes it is bright for me and I need to close my eyes occasionally, but it is rather pretty”. “What an interesting speaker, if the person sitting behind me sees my head moving about its ok, I will do the best I can to relax anyway and find value in the meeting.”

​Wait for Symptom Relief. Many with dystonia can find their symptoms start to dwindle in a social setting if they ‘patiently wait it out’. After allowing, relaxing, accepting, changing focus, you will be surprised how you can then start to desensitize yourself to the event, lessening symptoms and anxiety, and that desensitization will build upon itself at each following event.

Keep living in the now, while you are recovering from dystonia for the future

Continue reading, recommended posts about this topic on this Blog:

Can Anxiety Cause Cervical Dystonia?

tips for handling social anxiety from dystonia

dystonia, anxiety, depression and mental health

Author: Kim Amburgey

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* Limitless, How Your Movements Can Heal Your Brain. Joaquin Farias, PhD    here

** Psychiatric Comorbidities in Dystonia, Emerging Concepts. NCBI, PMC   here

***Cognitive and Neuropsychiatric Impairment in Dystonia NCBI, PMC here

Psychological Counseling at our Virtual Clinic   click here

Dystonia and Anxiety: How to deal with social anxiety caused by Dystonia Symptoms

 

In this post, I will follow up on a related patient experience about social discomfort and dystonia and another on  depression and Dystonia by sharing some tips to manage your Dystonia related anxiety, stress, and symptoms in social situations.

Ideas to help you achieve your emotional balance when you need it the most

Practice Dystonia Relaxation Exercises before social situations

When first reengaging socially, start out small with little external stimuli.  Go for walks with another where you can chat while moving, or sit together on a bench.  Being side by side takes face-to-face fears and stimuli off the table.  Or pick a gathering that has the focus on things other than social interaction – like a card game, singing in a chorus, watching children play in the street while chatting with a neighbour. Try to pick a venue that isn’t so intense – for instance, a quiet park has far less external stimuli than going to a loud restaurant.  Less stimuli = less triggers.  You can build up to larger venues and more stimuli – every time you attend an outing you will become desensitised to it that much more.

Practice your dystonia relaxation exercises just prior to the outing (and regularly as part of your daily efforts).

Items like Breathing Exercises, Qigong, TaiJi and some Therapeutic Music can be very helpful.  Find what works for you.

Once you are very comfortable with meditating, try to do so in different venues.  At first make it a quiet spot.  You can then, over time, add in external stimuli (noises, etc.).  You can also have your eyes partially open, just a bit, so you include desensitising yourself to any visual stimuli.  The objective is to be able to continue your calm state despite the activity outside of you.  This will help prepare you for public events that have a lot of sounds, visuals, etc., that can trigger our symptoms.

You can also practice cardio exercises daily as a means to mitigate anxiety levels.  Dr. Joaquin Farias explains why this can help both anxiety and movement symptoms, and how anxiety may have been the precursor for cervical dystonia development: Can Anxiety Cause Cervical Dystonia?

Using Eye Exercises to Improve Relaxation Responses to Anxiety

“The eyes of the other are not eyes because you can see them. They are eyes because they can see you.”  (Antonio Machado, Spanish poet)

If you have eye contact avoidance, often look down, or you stare at others unblinkingly, these issues can exacerbate our social discomfort.  We do this unconsciously from our overactive fear response and also our sensory overwhelm (averting eyes limits visual input, staring gives us a sense of control), and this type of eye contact sends a message to our brain that we are in a defensive response mode which causes our anxiety to kick in.  With regular training, we can override our unconscious bias to look away or to stare.  By making it conscious it can be overridden.  Eventually the practiced proper eyeball movements produce contextual muscle memory so the new tracking can run unconsciously in the background without asking for it.  The process needs to be combined with a relaxed confident approach.  Practice in a calm setting at first, eventually with people you find comfortable, then the general public.

To work on eye contact, while desensitising yourself to the human face and eyes, you can start with a photograph.  You can see their eyes and it is easier as you can do so without reaction from their eyes (like the poem).  Put an enlarged photo up on a wall and walk towards it.  Look from one eye to the next in what is considered a normal fashion, as described in “tips for eye contact” link here.  You can then do the same looking at a face on a video or television.  Next step is with a real person – since you will be ‘allowing yourself to be seen’ (as in the poem), recruit a person you trust and feel comfortable with to help.  Practice looking at their face, eyebrows, eyes, nose, cheeks, mouth – for a few minutes at a time in each area, while they are looking at you.  Practice for a few weeks in silence at first, then with conversation, then add on ‘pretend’ heated conversation.  Your goal is to allow yourself to be seen, allow the increase of visual sensory input without reacting with anxiety or overall body tension, eventually “allowing yourself to be seen” with more and more people.

It is important to do the daily eye work in the ‘Eye Exercises’ folder.  Training our eyeballs to track properly, be in sync with each other, strengthen our peripheral vision and relaxation response – all these things directly affect the reactive/fear response and emotional centers of the brain, so correcting any deficits will reduce social anxiety.

Practice the ‘Eye Exercises for Social Anxiety’ they are similar to the desensitisation work described above but more encompassing.

They are also very convenient and crafted by Dr. Farias just for this purpose.  Do the social anxiety eye work daily for some months, but also just prior to any social gathering.  These exercises train us to make proper eye contact with others, and desensitize the human face of which we’ve grown fearful/angry/annoyed due to our inflamed fear response and emotional imbalance.

So what happens if we feel fine at home, but suddenly that goes out the window when we are with another or in a group setting?

For those with dystonia, it’s the transition between calm and reactive (stress in our case) that is the most difficult, as Dr. Farias says, we’ve lost the ability “to put on the brakes”.  We can go from 0 – 60 in a split second.  0 being a calm state, 60 being a full force over-reactive state.

The most important thing is to IMMEDIATELY NOTICE you are getting anxious.  NOTICE when your first bit of body tension starts.  Then start to act immediately to calm.  If you instead ignore the anxiety and try to forcefully restrict  your movements,  it will likely escalate your current symptoms and cause you pain in the long run from fighting it.

When we are anxious, our body is in a defensive posture.  Even before we are consciously aware, our undermined parasympathetic nervous system causes an uninhibited sympathetic fear/reactive/stress response that engages our body to automatically react defensively – with things like a change in heart rate, irregular eye contact, enlarged pupils, irregular breathing, tensing up muscles, sensitive hearing, dissociation from those around us  —  all of these things send a message to the brain that something isn’t right and that kicks off our anxiety.  For those with dystonia, this can exhaust our brain and interrupt some of the neural energy needed for proper movement, and the tremors/spasms begin.  This defensive posture sets off the emotions of anxiety as our mind is asking “What’s wrong?”  “Why are you so tense?”.  This in turn starts a loop with our dystonic symptoms, and both typically keep escalating without a deliberate break in the loop – either by leaving the gathering to get to less stimuli and a feeling of safety – or by slowly training ourselves to get out of defense mode at the gathering.

How to Switch off a Defensive Posture

We want to switch off the defensive posture and anxiety.  Ways to do this:

As a preventative strategy to soften your fear of worsening symptoms by satisfying others curiosity or concern, you can make a simple statement like “My muscle isn’t working well so you may see me move a bit funny.  I’m in rehab for it but until it improves, try to ignore as best you can.” You can follow that with “I know I will” and give a shrug or a laugh.  Humor and directness is a great calming technique for all.  This simple acknowledgement of your symptoms will take loads off of your mind of “What will they think?” and this will lessen your stress.  If someone asks how it happened, you can choose to go deeper into what dystonia is.  It depends on what you want from the conversation.  Talking about it with those unfamiliar or uninterested may leave you more stressed.  Sharing with those who care or are interested may be rewarding.

Think of the belly and make sure you are breathing! – slowly and deeply. Inhale (imagine into abdomen area), then exhale for a longer count  (for example, inhale for a count of 4, exhale for a count of 5, 6 or 7+).   You can inhale through nose and exhale through mouth (with lips pursed), or you can breathe in and out through nose if that is more comfortable.  Our attention is always on dystonia.  We loop the “I have dystonia” thoughts and changing our focus to the belly calms us by taking us out of our own head.  It also insures we are not rapid/shallow chest breathing from our fear response being triggered.

Try to excuse yourself to find a quiet place – a quick walk outside alone or with another, even stepping into a quiet alcove or restroom for a minute to do some calming techniques without all of the external stimuli.

Do regular body scans throughout the gathering to be sure your body is relaxed as possible in all areas that are currently within your conscious control.  Go from head to toe and relax any area that is tense – we can have compensatory muscles tighten up and many are distinguishable as we have the ability to consciously relax them.

We are hyper focused on others as we are disconnected with our own body and mind, so we become over-concerned with others’ assessments of us. One way to break this obsession is to bring it inside, calmly, by doing some self-soothing talk.  Thinking to yourself, “I am breathing deeper now so I am relaxing” (not ‘I am breathing because I am scared’).  “I am happy to be here and will quietly calm to enjoy this gathering”, “Relax, relax, relax” , “All is safe and I am ok”.

Become a good listener:  Stop trying to fill the silence by talking, especially if you are impatient to do so.  Let others talk more.  We can sometimes feel we have to carry the burden of a conversation, or fill in the empty silent moments, or get our point across quickly.  Relieve yourself of that responsibility and become an enthusiastic and content listener.   Allow the conversation or gathering to occur without your control.  This will give you more time to focus on your calming techniques.

We have to develop the ability to wait. We are often too prepared with what we want to say and have no ability to ‘let the conversation flow on its own’.  We have to learn to hold back, just as we are learning to manage our lack of inhibition in movements, we also do so with our thoughts.  Before you speak, be sure you are speaking from a calm place and not out of your impatience (a lack of inhibition).  First allow your body to be relaxed.  Your shoulders, abdomen, larynx, eyes, hands, jaw, all should be relaxed.  Then you can talk (if you are able).

Try not to internally react to every statement or action by other people.  You do not need to react, you can instead breathe deep in and out and allow yourself to be a detached observer.  Let others control the flow of the conversation until you are more desensitised and comfortable.

Initially we are making social contact, but maintaining the contact without trying to control nor to always participate.  The idea is that by exposure (without trying to participate) the intensity of the defensive, fear response lessens.

Do some visualisations, like this one suggested by Dr. Farias:  Imagine you are a big tree, with roots and branches. Others in the group are also trees.  Extend your imaginary roots and branches out to the other trees.  This can help you reconnect with others in a positive way.

You can use your hands to engage with others in a calm manner.  When speaking, have your hand extend outwards towards others to help you feel connected.  You can also use your arms/hands discreetly to calm your own tremors/spasms, by slowly moving your hands downwards, almost “directing” the spasms and tremors to go at the slower pace and eventually stop.

Gently touching or lightly tapping different areas of body can engage a neural network that helps us calm and softens movements.  Experiment and find if one works for you.  For example, those with CD can find tapping/touching next to the mouth/cheek area on one or both sides of face can calm their spasms/tremors.

Smiling tells our brain all is ok – smile if able, feel the sense of a smile if restricted.  Smile knowing that in your heart you want to be able to socialize comfortably again, and you will.

Become a hugger. Hugs (with a willing other person) help us feel connected and cared for.  Ask family or a group of friends if they would do a hugging experiment – that every time you meet up – you greet each other with a quick hug.  It can help break the tension you feel, and you would be surprised how many human beings are longing to be held in the same manner so everyone benefits.

Pick one or two of the suggestions above and try them for a few outings – do not try to do them all during one outing as it will just cause you anxiety and be counterproductive.  It’s about consistent, patient practice.  Find the ones that suit you best over time.  Sometimes a tried and true method to help socially stops working.  This is normal.  Just try another and alternate them, eventually you can go back to your favorite methods as they will feel effective again.  If you have methods that help you, please share them with us by making a post in the forum.

Sometimes nothing will work and you just have to deal with it for that outing.

Maybe the visit to the dentist, gathering with acquaintances or your workday was just too stressful and your efforts to calm didn’t work or eventually stopped working – you got into “the loop” and couldn’t get out again.  Your dystonia may be in a highly symptomatic cycle, and your symptoms may also reflect the phase your are in.  Whatever the case, just let your symptoms happen and be honest with anyone watching.  Relax when you get home and try your hardest not to beat yourself up about it.  Remember – you did not create this problem in yourself – it’s something that happened TO you.  Give yourself as much understanding as you would give a total stranger with the same condition.

There will be another outing and you will be that much more prepared for and desensitised to it.  Try again and again as eventually it will get easier.

Remember, you are still working this program so internally, without you realising it, your body is getting more in sync, more at peace and this will help with your social engagement both on the physical and emotional side.

Those with dystonia have one character trait in common —  we are not a patient bunch of people!  We want improvement quickly, but improvements in emotional health that trigger our symptoms can take time, years for many, but it is achievable.

It’s all about patience, mindful practice, and most importantly self-acceptance because who knows how long we will have some symptoms socially so we may as well get comfortable with it.

A friend of mine with Blepharospasm, who has been following Dr. Farias’s protocol for over 8 years told me,  “You know, even though I’ve gotten most of my function back, I continue to notice subtle improvements.  Every year I look back and realize that, even if it’s in the slightest increment, I’ve improved.  Not just with having less triggers for eyelid spasms, but with overall happiness.”

We are on a life changing journey.  Having an expectation of immediate improvement or a cure will get you nowhere but frustrated.  Taking on this protocol as a long term goal for incremental improvements in physical balance and mental peace is the most logical and effective way forward.

Hope something above helps you as it has me,

Kim Amburgey

Continue reading, recommended posts about the topic on this Blog:
social discomfort and dystonia

 

Dystonia, Anxiety, Depression and Mental Health

 

I am a patient of Dr. Farias, moderator on his dystonia recovery program and coordinator of it’s Emotional Well Being section.  Following are some things I’ve come to believe about Dystonia, depression, and mental health issues by learning from Dr. Farias, researching and through my own experiences.  Perhaps something written here can give you ideas for self-discovery, or topics to explore with your neurologist, general practitioner or psychological counselor.

Those with dystonia can have a higher incidence of emotional issues, such as depression and anxiety caused by Dystonia symptoms, than the general population and working on these issues can dramatically affect our recovery efforts in a positive way.

Dr. Farias writes:

“Dystonia is not just a problem of movement control. The prefrontal lobes and the basal ganglia as well as the cerebellum are all areas that manage movement, emotion, behavior, and cognitive processing control at the same time. For this reason, patients affected by dystonia not only experience motor symptoms, but also more frequently affective-emotional ones. The management of emotions is also affected, producing emotional blocks.

The patient can feel constant sadness or loneliness, finding it difficult to change their internal emotional tone even though they are aware that no external reasons to feel that way exist. Thus, a prefrontal deficit leads to deregulation of the emotional response, producing depression in 65% of cases. It’s also common that inefficient cortical inhibition triggers impulse control problems (4%) or obsessive-compulsive episodes (43%).”

Large numbers of dystonia patients can have a comorbidity (a simultaneous presence of two chronic conditions) with psychiatric issues. Developing any chronic health condition can cause emotional disturbances as we struggle to make sense of what we’ve lost and our new lives going forward. The difference with dystonia is that there are significantly more patients that have or develop psychiatric problems (minor or major) than patients who develop a different chronic condition with similar degrees of disabilities and concerns.

Another noteworthy aspect is that these psychological issues can occur before the first movement irregularity does, sometimes months, years or even decades prior. An excerpt from a scholarly article:

“Psychiatric disorders are highly prevalent in patients with dystonia and can have a profound effect on quality of life. Patients with dystonia frequently meet criteria for anxiety disorders, especially social phobia, and major depressive disorder. Deficits in emotional processing have also been demonstrated in some dystonia populations. Onset of psychiatric disturbances in patients with dystonia often precedes onset of motor symptoms, suggesting that the pathophysiology of dystonia itself contributes to the genesis of psychiatric disturbances. This article examines the hypothesis that mood and anxiety disorders are intrinsic to the neurobiology of dystonia, citing the available literature, which is derived mostly from research on focal isolated dystonias.”

We are learning how intertwined emotion and movement can be. Many with dystonia noticed emotional changes, whether anxiety, depression, social anxiety or obsessive behaviors, escalated around the time of diagnosis or in the months and years prior. Some have also been aware that they showed tendencies of these emotional issues throughout their lives even prior to developing dystonia’s movement issues.  This is by no means saying we are ‘imagining’ our condition, not at all, but it does mean we are more likely to also have emotional issues.

Since emotion and movement affect each other in the brain, we can understand more clearly why our stress triggers movement symptoms, and of course when we have symptoms it triggers stress – and one feeds the other and we develop a stress-symptom-stress-symptom feedback loop.  We can interrupt the loop by improving the flow of movement, nervous system balance, and brain synchronization through exercises and relaxation techniques.  We also work to diminish any external or any internal emotional stress.  Over time, by continually interrupting the loop we can break the feedback cycle and at the same time effectively learn to manage both our movement and emotional symptoms going forward.

As you approach or continue this recovery journey, I hope you reach out for the appropriate psychological counsel when needed.  When I first met Dr. Farias, I will admit to being what I would now compassionately call ‘nuts’ – anxiety, obsessiveness and social anxiety were overwhelming. These emotional issues began well before the first movement irregularities. After two years of work with only Farias’s protocol, I noticed dramatic improvement with not only movement and overall physical health, but with psychological issues. After that, even though movement issues had leveled off to a manageable and comfortable level, the emotional aspect has continued to improve as I continue to work on it.  Seven years later I can clearly say I returned from ‘nuts’ to my baseline normal.. even better than my baseline.  I’m now able to recognize emotional (and movement) instabilities if they start to creep back in and can manage them before they become a landslide.

Dr. Farias writes:

“Intervention for psychological elements is a basic component in the therapeutic process.”

By addressing psychological issues, we can dramatically help ourselves to manage dystonia’s movement issues – and at the same time, relief from emotional strife enables us to enjoy life more fully.

 

With knowledge comes hope for a brighter future.

Kim Amburgey

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* Limitless, How Your Movements Can Heal Your Brain. Joaquin Farias, PhD    here

** Psychiatric Comorbidities in Dystonia, Emerging Concepts. NCBI, PMC   here

***Cognitive and Neuropsychiatric Impairment in Dystonia NCBI, PMC here

Psychological Counseling at our Virtual Clinic   click here

Related Reading:

1. How long does Dystonia last?
2. Can Dystonia be Cured?