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?
—
FRUITFUL AREAS OF POTENTIAL FUTURE RESEARCH – SUMMARY BY CREATOR OF THIS WEBSITE
Research suggestions for the study of dystonia
Dr. Francis Colavita, expert in physiological psychology at the University of Pittsburgh, (now deceased) studied sensation and perception. Some of his insights may be very useful to those of us who have dystonia.
In the ongoing pursuit of what causes our condition, how to alleviate it or even cure it, there may be an answer if we understood sensory tricks that are common with the condition.
Dystonia is one of a group of movement disorders. Most people in the public have never heard of it. However it is a common symptom of some other diseases the public has likely heard of. Dystonia as the involuntary muscle contractions that cause odd movements often also occurs in Parkinson’s disease, cerebral palsy, Huntington’s disease and even reactions to some medications.
That means that dystonia is not all that uncommon.
It is however not well understood.
When a person has intense pain in the left side of the neck, relentless involuntary muscle tightening and feeling of pressure, the research to date seems to show that there is actually no problem with the muscle. The problem is in the messaging between the brain and that muscle. The brain is telling that muscle urgently to tighten, and there seems no good reason.
Researchers have looked at the problem from two angles. One is to see if the message from the muscle to the brain is somehow at fault. They look at whether the sensory perception of a problem alerting the brain to handle an emergency is a flawed message.
The other approach is to look at what is happening in the brain, to see if the area that is active to send messages out to the muscles is malfunctioning, or if the neurotransmitters there are somehow overactive.
As far as I know, neither of those areas of study has been conclusive .
But there is added to the mix, an oddity. If a person has intense pain on the left side of the neck forcing the person to tilt left or lean the head forward or both, the tendency of course is for the patient to try whatever they can do, any new position, any new action to get rid of that pain. It was discovered even centuries ago that if a person with that challenge pressed a finger to the corner of the right chin, the pain on the left side of the neck disappeared! It was not remotely logical. It was not anatomically even related and yet there it was.
This phenomenon was named a ‘sensory trick’ and over the years patients with dystonia have discovered, usually by fluke, a few others. Some can get rid of the pain for a few seconds by touching the back of the head, some by touching the cheek . Those whose muscle tightening is in the jaw may find that their crushing pain is gone as long as they chew gum. Those who have the pain on closing the eyes sometimes find that touching the eyebrow makes the pain disappear.
However these oddities or ‘tricks’ are not only counter intuitive but not universal. They may work for months and then not. They do not work for all people with the same condition.
However many researchers have expressed the idea that if we understood the sensory tricks, we might have a much better understanding of dystonia. In the mystery may be the answer to the bigger puzzle.
Here is what I have learned about skin sensation that may be applicable.
1.cutaneous stimulation is experienced because there are discrete receptors in the dermis layer of the skin
2.These receptors are very specific. Some of these encapsulated end organs are sensitive particularly to :
-warm – Ruffini cylinders are receptors for warmth. Warm receptors are deeper under the skin (.3 mm deep) than are cold receptors (.1 mm deep) That suggests to me that it is easier and faster to alert to cold than it is to notice warmth
-cold- Krause end bulbs are receptors for cold. There are more of these receptors for cold than there are receptors for warmth
-light touch- Meissner corpuscles are receptors for light touch
-pressure – Pacinian corpuscles are receptors for deep touch
-vibration- Pacinian corpuscles are receptors for vibration
3. These receptors are not spread evenly throughout the body. Touch sensitivity is very precise at the periphery of the body and less precise towards the body’s midline axis. We can’t be precise about where we are touched on the back but we are very good at identifying where we have been touched on the hand.
4. Pain sensitivity is greatest however along the midline access, where vital organs are, and decreases towards the periphery. The parts of the body that are the most sensitive to pain are the eardrum and the cornea. We are able to explore our world with our fingers and hands and not suffer intense pain, but pain is felt more intensely near the vital organs.
5. Some parts of our bodies do not have pain receptors however. The brain has no receceptors for pain so it is possible to probe it even when the patient is conscious, and no pain is felt. The brain however can send out pain signals, which I assume are instructions to the body of how to deal with pain felt in other locations.
6 The internal organs also have no pain receptors. The connective tissue around them however is full of pain receptors. This suggests that a person can have stomach or liver or gall bladder pain only because the pain is actually in the connective tissues of those organs.
7. The mucous lining of our cheeks also has very few pain receptors.
8.There are no receptors for ‘hot’. When people experience something very hot, it is because of simultaneous stimulation of both the warm and cold receptors. If a person enters a very hot shower for instance, initially the experience may be perceived as cold. This phenomenon has been called ‘paradoxical cold’.
9. In the 1950s it was noticed that some sensations did not seem to have specific receptors. When we sense something is wet, or itches us or tickles us, we have found no specific receptors for those sensations. They seem to be perceived by free nerve endings which have a nonspecific and very primitive ability to help us register those sensations.
10. Free nerve endings transmit cutaneous information to the brain along a very primitive pathway, the spinothalamic tract. The brain seems to analyze input from these free nerve endings plus input from the more specific receptors, the encapsulated end organs. It is therefore analyzing multiple inputs when it perceives something like a tickle.
11. The sensory trick is a touch based oddity. The part of the body that is touched is not usually the part with the intense dystonic pain so that is mystery one.
12 The sensory trick however seems to work for some people with very gentle touch, even for some when a person does not quite touch the area, if they are just nearly touching it. For others the touch has to be real and even a bit of pressure. So that is a second mystery.
13. With tickling, people sometimes find if another person tickles their rib, they find it very uncomfortable and yet they themselves can touch that area and not feel ticklish at all. So there is an oddity there that may be related to feedback. If a person creates the motion and then also senses its effect that seems different from if they only sense its effect. With sensory tricks, does it happen if another person or object touches that part of your chin? It does seem that devices to touch the chin, objects in the mouth like a pencil, hats over the head, collars at the neck can also create something like the sensory trick of you touching that area yourself. But is it as strong or predictable? Patients seem to differ and more research may be useful.
14. As people get older, huma skin loses elasticity. More mechanical pressure is needed to produce sensation of light touch or of vibration. The age of diagnosis of adult onset idiopathic dystonia is between 41-50 years. So these are adults with actualy less skin sensitivity than children have and yet they still are very attuned to the sensory trick.
15. As a person gets older thre are fewer of those specific encapsulated end organs. However there still are a lot of the free nerve endings, the ones sensitive to wetness, itch, tickle. The free nerve endings are not as precise in responses to stimulation than are the encapsulated end organs which suggests that from middle age people are more attuned to those sensory trick sensations but are not going to be very clear on their precise location.
16 The sense of touch does not start to decline until about age 50. However that may suggest that with a sensory trick we do feel the hand touching our chin but not as well as we did when young. Still however it works and has its effect.
17. As we age, our nerves conduct more slowly and messages are taken a bit more slowly to the brain. The message back from the brain to respond is also slower so reaction time of seniors to touch is a bit slower than it is for young people.
18. If we are touched simultaneously in two locations on the skin, young adults can often sense both touches but very young children and seniors over age 70 often can only feel one of them. This may suggest that however wonderful a relief the sensory trick is for a senior, it is hard for them to be specific in reporting its location.
19. Touch has a strongly emotional connection. Tactile stimulation of premature babies has been found to help them thrive. Massaging a baby tends to improve its immune system and development. In our culture also shaking hands, holding hands, patting the back , hugging are common gestures of reassurance and our bodies do respond to such encouraging touch. People who are in an anxious state have reduced heart rate and lower blood pressure if someone touches their shoulder or hand. Even people in deep comas have beneficial heart changes if someone holds their hand.
20. There may be a possibility that the sensory trick then has a physical logic not yet understood, but also that it has an emotional component. Some with dystonia report that heavy pressure on a part of the body that hurts, but that somehow is also comforting. These phenomena bear study.
Here is what I have learned about pain that may be applicable
- The main receptors for pain are the free nerve endings.
- The receptors are equally responsive to a wide range of forms of energy. The pain can be a prick or a vibration or cut but the same message is felt- pain. The specific receptors, encapsulated end organs each respond to a specific form of energy such as sound, or light or states or smell. But the free nerve endings respond to a much wider less specific range. Pain can be felt drom chemicals, pressure, extremes of temperature, electricity, tissue damage even radiant energy.
- There are two aspects to pain sensation. One is the message from the area to the brain that there is pain . The other is the message from the brain to the body to act, the ‘drive like’ quality of pain. Unlike for other senses where the message goes to the brain and a person may not choose to act, pain leads to nearly immediate action. It is nearly impossible to ignore severe toothache, kidney stones or a migraine headache.
- When doctors try to alleviate pain they may not be able to suppress the message coming from the painful area to the brain .The pain still will come. But they may be able with medication or surgery to reduce the drive-like quality that impels the person to act.
- Sometimes athletes seek out their maximum performance level and do the activity just till it hurts. They try to push that level and endure higher levels of pain so that when the slightly damage muscle fibres they are then rebuilt strong. The athlete tries to experience what they call ‘good pain’.
- It is possible to ignore pain briefly if there is another pressing crisis, such as during a car crash or war attack, only to register it intensely as soon as sthe crisis is over.
- An experience is considered painful most if we are paying attention to it and not distracted. Those who listen to exciting music while in surgery often report that they feel less pain. A person with dystonia can work on a computer project for half an hour and nearly be oblivious of the pain, until the moment they stop the computer work and then the pain is noticed again
- If we expect something to be very painful, we are more likely to experience it as painful. If we are told when we get an injection that there will be a ‘small prick’ we often experience it as less painful than if it was not expected at all. So expectation matters. This suggests that with sensory tricks even , the expectation we have of pain reduction from past experience may be already part of the mental process of feeling the pain reduction.
- Drs. Ronald Melzack and Patrick Wall proposed a gate-control theory about pain. The idea is that there is sort of a gate for feeling pain. Nerve fibres from both the encapsulated end organs and the free nerve endings all are sending branches to an area of the brain called the substantia gelatinosa. If electrical activity there is reduced, the gate to pain opens and there is more pain. If however if there is increased excitation of touch, warm, cold the gate closes and there is less pain. That is a theory that is used for acupuncture.
- The theory suggests that if can increase the messages from the encapsulated end organs and reduce them from the free nerve endings then the patient will experience sensations of warm, cold or touching instead of pain. That is why heating pads, ice packs, massages, alcohol rubs, whirlpool baths can seem to reduce pain.
- Some people using acupuncture needles may make use of ‘trigger zones’ that are neurological links between parts of the body. When an area like that has a needle inserted, there is more activity in the nerve fibres from the encapsulated end organs.
- The body makes its own pain reducers, called endorphins. As soon as there is pain, the body releases endorphins to help cope with it. When these are produced pain is not eliminated but it can be reduced.
- Some endorphins are made in the pituitary gland. They spread quickly through the blood stream when there is a crisis and this explains why a needle inserted in one side of the body can reduce sensitivity to pain in another part of the body. This mechanism sounds surprisingly like a sensory trick. It has been found that inserting needles at some acupuncture sites does cause release of endorphins .
- The body also releases endorphins on other occasions and when they are produced, there can be a reduced feeling of pain. These can be created when hearing some pleasant music, seeing a pleasant event, even experience a ‘runner’s high ‘ during exercise
- In the 1980s a substance P was discovered that seems to be a brain neurotransmitter related to pain.
- There are two types of pain. Superficial or bright pain involves the body surface and results from cuts or puncture wounds.
The other type is deep pain sometimes called dull pain. This is associated with pain from fractures, muscles, joints, ligaments, tensions and may give a throbbing aching sensation.
- As we age pain sensitivity changes. Sensitivity to superficial injury gets less. A senior is more oblivious to minor injury
However seniors become more sensitive to deep pain.
- Pain has been categorized many ways. It may be useful just to list the features that make pain differ
-acute pain is short term. Chronic pain is long term, for instance over 3 months
-cause of pain may be injury such as burn, cut, fracture
-cause of pain may be inflammation, swelling after infection
-location of pain- may be skin, muscle, joint, bone
-experience of pain- may be shocking, electrical zap feeling,
-experience of pain may be burning, prickly, stinging, tingling, shooting, freezing
-experience of pain may be aching, throbbing, stabbing
-experience of pain may be that it is sharp or dull
-experience of pain may be pressure, squeezing, cramping
19. People are often asked to rate their pain on a scale. This however is very subjective. People may be personally or culturally used to admitting or denying some levels of pain. They may have different pain thresholds. However the medical profession often asks a person to rank their pain from zero to ten. Though others may not agree on pain for a given experience, it is still relevant to notice that for this patient that is how it feels
A mild pain- annoying but not interfering with daily activities much
1 – barely noticeable, barely think of it
2 -minor. Annoying with occasional twinges of stronger pain
3. noticeable and distracts me a bit. However I get used to it
B moderate pain- it interferes signficantly with my daily activities
4- I can ignore it for a time if deeply busy but it still distracts me
5- I can manage to work or take part in some social activities but it can’t be ignored for more than a few minutes
6- I have trouble concentrating. It interferes with normal daily activities
C. Severe Pain- I can’t do daily activities much . It is disabling
7- It dominates my senses, limits my ability to do normal daily activities and maintain social relationships and interferes with sleep
8 – it is intense and my physical activity is limited. It takes great effort even to talk with other people
9 – it is excruciating. I can’t speak with others and may cry out or moan uncontrollably
10 -I am restricted to bed, possibly delirious and the pain is unspeakable
20 the most painful experiences have been ranked by some researchers. There is of course problem saying which is worst. On some scales dystonia is near the top.
Some of the other most intense pains reported are giving birth, shingles, frozen shoulder, migraine headache, gall stone, kidney stone, appendicitis, slipped disc, heart attack, bone fracture, fibromyalgia.
21. the qualities of a pain may help researchers understand it.
-how long it has lasted, how often you feel it
-what activity seems to precede
-what activity seems to make it less
-where it is felt in the body
-whether pain moves or stays in one place at a given time or over a few days
-if the pain is constant or intermittent
(with dystonia many people report constant pain, with unclear trigger but fairly identifiable key location. Many report that it does move or ‘spread’ over time. The sensory trick however seems to have effect in many situations anyway)
These qualities of pain make dystonia more identifiable if we can put our experience of it into categories.
The fact of sensory tricks eliminating pain entirely is a marvel though, both that it happens at all, and how it happens and why it lasts for s little time.
And here are some experiments that I think may be very useful to help us better understand the sensory tricks:
1.Is the location of the sensory tricks near some identifiable skin receptors? Do they tricks occur more where there are Meissner corpuscles or Pacinian corpuscles?
2. Is the location of the sensory trick near any vital organs? (one assumes not.) Are the trick locations near any connective tissue for the vital organs? (one assumes not since they are very surface. However when a sensory trick occurs at the eyelid is it near connective tissue for the eye?)
3. Are any of the sensory tricks at the cheek? Since the mucous lining of the cheek has few pain receptors, does that correlate with also having few locations of sensory tricks? Why this is odd is that some of the sensory tricks seem to be in areas very near the cheek.
4. is the area of sensory trick also an area for being ticklish? Is it an area that touching it is often itchy? Are the messages for the trick in any way related to the free nerve ending messages?
5.Does the sensory trick touching the chin work the same whether the finger is wet or dry? Is it different depending on if the finger is warm or cold?
6.Does the sensory trick work differently if the touch is gentle touch or heavier pressure? Does it work if there is technically no touch of the area just a finger coming very near it?
7. Does the sensory trick work if some other person touches your chin? Does it work if some object directed by you touches the chin, such a straw or key case? Does it work if some other person touches your chin with an object they control? Does it work if another person guided by your hand on top of theirs uses an object to touch your chin? In other words does the trick work only if there is some feedback loop from your intent to move?
8.What is the response time of a sensory trick? Is the pain eliminated immediately or gradually? How fast does this messaging work? (most people report that it is immediate)
9. Does the sensory trick operate in gradations or does it happen entirely or not at all? (most people report that it is either-or)
10. if you have two locations of sensory trick, such as touching middle of forehead and touching chin, when those are touched simultaneously do they both work or does only one work? Can the patient feel both being touched or just one?
11. Do some tricks work to reduce pain while others work to end tremor? Some people find that touching between the eyes or on beneath the third finger on the palm ends tremor but does not affect pain. Some find that touching the chin ends pain but does not affect tremor.
12. Does the sensory trick bring any emotional response such as relief? Does the emotion come before, during or after the touch? (Most people the emotion comes only during the trick and ends immediately when the physical contact ends)
13. Does the sensory trick work better if a person is already in a specific mood? Does it work better if the person is relaxed or tense, happy or unhappy, or does it have no relation to emotions before the area is touched?
14. When the person uses the sensory trick, do they still any pain or is the effect just to not have to act on the pain?
15. Does the sensory trick work independently of other means to reduce pain such as hot pads, warm baths, cold compresses or does it work better or worse when those are also being used?
16. Does the sensory trick work independently of other means to distract from pain such as electrical simulation or vibration machines or listening to music, or does it work better or worse when any of those are being used?
17. Is there evidence of more pituitary gland activity and production of endorphins when the sensory trick is used?
- If the person has a malfunctioning pituitary gland, does the sensory trick still work?
- Are sensory trick locations the same as common acupuncture points?
- Even though dystonia is associated with deep muscle pain, and the sensory trick is only on skin surface, does the trick seem to reduce the deep muscle pain?
- If there is muscle injury, such as from intense exercise, does the sensory trick still work?
- If a person reports that a sensory trick works, what type of pain do they report it as helping with from a list of : burning, prickly stinging, tingling, shooting, freezing, aching ,throbbing, stabbing, sharp, dull, squeezing, cramping? What type of pain is it reducing? Are there types of pain that the trick does not reduce?
- Do people have the same sensory trick for years or does it stop working?
- Do people discover new sensory tricks over time?
- Does the type of sensory trick change in any pattern linked to the change in pain? For instance if the dystonia of the left side of neck moves to the right side, does a different sensory trick appear?
- If another patient with dystonia has found that a given trick works, does hearing about it help other patients learn of areas they could try? In other words is there a likely common ground of areas that work for many patients?
Dystonia research is looking at many angles right now in 2026. Some researchers look at genetics and have found some genes that may be related for certain types of dystonia. Other researchers look at treatment, often looking at injections of botulinum toxin to reduce the pain. However funding for any research is very hard to find. This is not a condition that attracts the same urgency and attention of funding groups. Yet it does matter. It seems to me, just as a patient, that understanding its oddities could really help a lot of people around the world. Those who fund it have the chance to in their own way become heroes. So,there’s that.
Lived Experience With Dystonia 