Here is a list of some of the actions people have tried to momentarily alleviate the symptoms of dystonia. Their effect remains a mystery but has often been confirmed by clinical research. The list is compiled from experiences described in biographies, videos, discussions and research studies. This is not intended to be medical advice. For your particular situation, contact your doctor. Do not try these if they are in any way uncomfortable.
The movements listed here are not actions to force movement. They are not the regular exercises done to stretch. These are the gentle touch movements that in some cases have a surprising effect.
Individual results vary widely. Some patients report that a gesture from another category than their own type of dystonia works. Some find that effectiveness of the gestures changes over time.
Many patients find that the gesture works nearly immediately or does not work at all. Some say that certain tricks work for one problem and others for another. One trick might reduce left neck tightness and another back neck tightness. Some find that one trick is good just to reduce tremor.
Actions mentioned for several types of dystonia
- touching cheek
- pressing down on thigh
- touching back of head
- touching chin
- dancing
- whistling
- yawning
- coughing
- counting backwards
- reading a book
- working at computer
- burping
- singing
- bending forward at the waist
- chewing gum
Actions mentioned for eye dystonia
- looking downwards
- pulling upper eyelid
- pulling eyebrow
- touching face beside eye
- applying slight pressure to eyelid
- humming
- painting
- drinking cold liquid
- touching forehead
- wearing tight goggles
- blowing out the cheeks
- sucking in
- massaging the cheek bones
- pinching back of neck
- touching nose
- wearing cap or turban
- gently covering the eye
- playing a musical instrument
- pushig head back
- closing the jaw
- covering the eyes
- picking the teeth
- putting tape on eyebrows
Actions mentioned for jaw and mouth dystonia
- putting a straw, toothpick, tongue depressor or pen between the teeth
- brushing teeth
- flossing teeth
- touching tongue to roof of mouth
- touching lips
- burping
- sucking in air
- blowing out air
- drinking a cold beverage
- kissing
- biting a piece of plastic
- bending the neck
- biting the lip
- touching lip
- touching lower face
- touching tongue to roof of mouth
- ice massage of facial muscles for a few minutes
Actions mentioned for vocal cord dystonia
- speaking in falsetto voice
- shouting
- singing
- smiling when speaking
- having loud radio noise on in background when speaking
- standing when speaking
- grimacing
- talking in baby talk
- having a sip of wine before speaking
- talking extra loudly as if angrily
- laughing
- not clearing my throat of mucus when congested
- better after I had laryngitis
- better when I have a cold
- better when my vocal cords were swollen and touched each other
- better when I had swollen glands
- raising one arm
- touching side of neck
- putting peg on finger
- humming
- blowing raspberries
Actions mentioned for neck dystonia
- touching temple
- touching between the eyes
- touching the eyebrow
- touching behind the ear
- focusing on a stationary object while walking
- leaning elbows on armrest
- touching top of the head
- pinching the neck
- touching centre of cheek
- touching skin in front of ear
- leaning elbows on an armrest
- looking at oneself in the mirror
- touching nose
- touching crook of jaw
- touching back of neck at base
- touching middle of ear
- visually fixating on some object
- focusing on a stationary object while walking
- wearing a collar
- wearing a scarf
- resting the back of the neck on a wall or cushion
- cupping arm around head
- scrunching shoulders when walking
- alternating shoulder scrunches when walking
- tickling but not massaging the muscle
- pounding the shoulder
Actions mentioned for shoulder and arm dystonia
- touching the arm with the other hand
- touching the shoulder with the other hand
- playing pool
- playing basketball
- playing baseball
Actions mentioned for hand, finger dystonia
- touching the wrist with the other hand
- touching one hand with the other hand
- writing upside down
- touching nondystonic hand to dystonic hand
- immersing the hand a few minutes in cold water
- writing with a closed fist
- holding pen between index finger and thumb vertically
- writing with chalk
- writing with larger motions and swirls
- writing using shorthand
- switching hands to write
- looking in the mirror when writing
- typing
- playing the piano
- digging around in the garden
- using scissors
- doing jigsaw puzzles
- gripping a baseball bat
- holding a golf club
- switching hands to use a screwdriver
- switching hands to brush the teeth
- coloring
Actions mentioned for leg, foot dystonia
- walking backwards
- walking up stairs
- walking sideways
- running backwards
- running up stairs
- running sideways
- bouncing ball against wall and retrieving it
- doing jumping jacks
- while walking, putting left hand on left knee and right hand on right knee
- riding a bicycle
- holding hands over the head
- running a track in another direction- eg counter-clockwise
- applying pressure hand to hip
- walking on beach sand
- wearing a low slung backpack
Actions mentioned for trunk dystonia
- raising arms out from side of body
- swinging arms while walking
- rubbing the back against the wall while walking
- putting books on top of the head
- resting back of head against wall when sitting
- resting back of head against wall when standing
- touching chin with both hands clenched into a fist
- folding arms across chest
- touching centre of sternum
- using a low -slung backpack
- pressing back against the wall
Actions mentioned for reducing tremor
- touching spoon to tongue
- touching skin fold between thumb and first finger
- holding objects like pencils in the fist
- gently biting the tongue
Note: research studies indicate great interest in these ‘tricks’. Some people have discovered theirs only after hearing of them in a doctor’s office. Study of the mechanics of them may hold a real a secret to understanding dystonia. If you have experienced other ‘tricks’ to add to this list, you are invited to describe them. See the contact page.
COMMENT FROM RESEARCHER FOR THIS STUDY:
As a patient and having looked at these sensory tricks in depth, I feel these additional questions may be worth study.
The common ground of sensory tricks
The problem with sensory tricks is that they may look odd to an outside observer and may seem illogical, mainly mental tricks. It is likely however that they are actually physically logical if we knew the mechanism involved. Most people with dystonia have in their intense discomfort shifted position a lot and eventually found some things that help, actions that surprise them. But the pattern that they find is not actually quirky but often universal, surprising but actually very logical in physics and likely in neurology. If we were to understand the mechanisms, we might have huge breakthrough in understanding the very complex nature of the muscle and brain messaging – for everyone.
- Touch
Something about skin to skin contact seems to disrupt the pain or pressure message.Is that because immediate new contact is a new message and overrides the ongoing background one? Is it because touch from outside overrides the internal message of pain?
-eg touching chin, cheek, back of head, top of head, temple, between eyes, behind ears, in front of ear, in middle of ear, at side of eyelid , on top of eyelid, hip, wrist, forehead all are skin to skin
-eg contact of an external object with the body also seems to help. – having toothpick or toothbrush in mouth, holding object in hand, wearing tight fitting eyeglasses, wearing a hat, wearing a collar or scarf, having book on your head, using dental floss, kissing, putting tape on the eyebrows
Eg. Leaning head on cushion, leaning head against chair back, standing with back against wall, sitting with head against headrest, resting elbows on armrests, sleeping with strategically-placed pillows
Resting the muscle against a surface seems to help. Why? Is that because it gives physical support, or is it warmth? Does it reduce pull of gravity? Does it on a micro level prevent tremor?
-eg. Larger body movements that actually may just be touch sensation – folding arms across chest, touching hand to hips, touching tongue to roof of mouth, cupping arm around head when trying to sleep
-eg. Pressure points and touching to reduce tremor- eg. Touching between thumb and forefinger, touching below 3rd finger on palm. Are there some parts of the body that send priority messages to the brain that override pain?
Is the body comforted by touch? Is the touch different if heavy? Does heavy touch actually reduce pain? Does touch reduce tiny tremor?
2. Using a new sensory path, asking the body for a different action entirely
Is the body just worn out from nonstop holding the same position? Did the brain stop hearing the message from that muscle or is the message from that locked muscle so intense that the brain can barely register other messages? If dystonia is exhaustion with a message from a tight muscle, is it a relief to just ask for a new motion? Some tricks surprise the person because they ask for the unexpected and that action is oddly easy.
Eg. Dancing, bending at waist, playing baseball, bouncing a bal against a wall and retrieving it, writing upside down, writing with chalk, painting, using scissors, leaning over edge of bed and lifting head
Eg. Getting the task done with a new body strategy- using the opposite hand to write, holding the hand a new way around a golf club, holding pencil a different way, writing upside down, writing with large swirls, writing shorthand
Eg. Speaking in baby talk or falsetto, singing if having trouble speaking
Eg. Whistling, humming -seem to activate slightly different pathways and can be easy when speech is difficult
3.Reminding the muscle of the back and forth of its range by asking it to do the opposite of what is difficult
Is a muscle kind of frozen and not fully responding any more to the commands on how to move? Some people find that if they do the opposite motion the muscle seems reminded of its range.
Eg. Blow out air, suck in air, close the jaw- to exercise speaking
Eg. Yawn, chew gum, burp – to remind the muscle of range
Eg. If having trouble swallowing some people spit out, cough out even though problem seems to be with taking things in
Eg. Running a track in the opposite direction, running backwards, walking backwards, running sideways
Eg. Swinging arms while walking, walking with shoulder shrugs alternating
Though doing these new motions seems very easy, that effect is lost as soon as that motion is stopped. Unlike just exercising a muscle where now the muscle is more fit and limber in general, the sensory trick is short -lived. As soon as the distracting motion is ended, the dystonic lock tightness comes back. Why is that?
4The effect of cold
Why do a few minutes of ice cold help sometimes? Is this a surprise to the body so the sensory message that is so worn and exhausted, is suddenly a new message along a different path?
Eg. Soak hand in cold water, drink bold beverage, ice massage the face briefly
Is the dystonic message so intense in the body that it heats up some sensory pathway even, just like an appliance heats up when in use? Is the dystonic message ‘on fire’ so to speak so that cooling the body in that area actually helps? Why do some people find that heat helps instead? Is that a similar disruption of the dystonia temperature along the pathway? Is the mechanism similar to how when a person has a muscle sprain, heat and cold help?
Lived Experience With Dystonia 