Jaw, Mouth
A. Context
In some patients dystonia affects muscles in the jaw, face or tongue. Some patients are diagnosed with oromandibular or cranial dystonia. The survey on this topic may also have generated responses from those with other forms of dystonia, who have some jaw or mouth involvement.
Some patients are diagnosed with temporomandibular disorder, affecting the temporomandibular joint linking the lower jaw to the skull and prominent just in front of the ears. This joint that acts as a hinge to enable chewing and speech is often dramatically affected by dystonia.
Dystonia in the mouth or jaw can affect two major functions- eating and speech.
B History
1550 – Pieter Bruegel, a painter in the Netherlands, does dozens of paintings of ordinary life, using landscapes and street scenes. He shows peasants at daily activities skewering a pig, or slicing fish, people who are dancing, begging, drunk, seen from behind, from the side, from the front. In one painting De Gaper, there is a person with an extra wide yawn, gaping in a way that seems like jaw dystonia. The painting was noticed by neurologist David Marsden in 1976 and the jaw dystonia was for a time named Bruegel’s syndrome.
1887- Horatio Wood, neurologist in Pennsylvania describes dystonia the eyes and in the jaw
1900- French neurologist Henry Meige studies a condition in ten patients with jaw oddities and eyelid closure. Later this is named the Meige syndrome though it gets differentiated into two separate dystonias. Meige at first believed patients lacked ‘psychical equilibrium’, and suffered from melancholic temperament and emotional stress but in 1910 found evidence that there was an actual change in the activity of the midbrain especially in the basal ganglia.
1942- Raymond Chandler in ‘The High Window’ describes a character whose head is drawn around to the left angle about 45 degrees and who has jaw contractions
1972 – Neurologist Dr. George Paulson studied jaw dystonia and eye dystonia in 3 patients in the US
C. What seems useful to study further
1. closing or opening the mouth
Ability to open and close the mouth at will with deft control is a key feature of daily life. When it is hard to close the mouth, it is nearly impossible to use a straw. When it is hard to purse one’s mouth on command, it is hard to blow out a candle, blow up a balloon, whistle or sing. The exact situations where it is difficult however could be studied to see what part of the effort is still successful and where the problem lies.
In dystonia of the eyelids, the main presentation is the eyes clamping shut, and great difficulty opening them. With dystonia of the mouth the presentation can be problems with opening but seems more commonly to be problems with closing. The mouth may clamp shut and be hard to open or it may stiffen when open and be very difficult to close.
The variation itself may be worth study. If dystonia stiffens muscles to an unnatural position it may be useful to study what is the natural rest position. For eyes one assumes rest means eyes closed and yet there is effort involved in scrunching the eyes shut as well as in opening them wide. The ‘rest’ or natural position may be a middle situation where the eyes are closed but not tightly closed, even partly open. Babies sometimes fall asleep with their eyes open and it may be that humans learn to close their eyes. When people die they often die with their eyes open.
The mouth natural position may similarly be useful to study. One might assume that closed mouth is the natural position. However a very relaxed person, asleep and snoring often has the mouth slightly open. People when very surprised and not consciously controlling their mouths may notice that their mouth is hanging open, gaping. It takes effort to open the mouth wide,at a dentist’s office or to clench the jaw tight. However the natural resting position may be somewhat in the middle. If that is the case, then dystonia seems to interfere with that natural position.
2 controlling blowing air
Problems pursing the mouth can hamper ability of players of wind instruments to form an embouchure. Many report they have to severely modify their technique and some with great regret have to give up playing. For professional musicians this may rob them of a career, income source, status and self-esteem. For hobby musicians it also may deprive them of a leisure activity they love.
3. controlling the tongue and lips
The tongue is used to taste food, to move it around the mouth, and in speech. The mouth and tongue are also used to clean the teeth and remove particles after a meal. People with dystonia of the mouth and jaw often report that they have to work harder with a toothbrush and floss to do what the tongue no longer does as efficiently. People in the general population often purse their lips together, to hold momentarily in place a hairpin as a person does their hair, or a nail as they align wood to hammer. Difficulty keeping the lips in a desired position can make such activities not just difficult but even dangerous if there is risk of choking.
4. chewing
When the jaw is not able to quickly respond on command, even a short delay can lead to difficulty chewing food and accidental biting down on forks, toothbrushes, tongue depressors and dental equipment. When the ability to chew is less predictable, patients report that they adjust strategies to be able to eat. They tell of opening the mouth wider to make a more dramatic chew and of eating only soft food, nonslippery food and food with definite dimensions the brain seems to register more as needing to be chewed. The foods and beverages patients choose indicate mundane but scientific experiments about what the jaw can still do.
Accidental chomping down can injure the tongue and cheeks. Some patients report painful biting of their own tongue in the night as they sleep. When the mouth opens and closes less effectively on command, eating and drinking can lead to embarrassing spills, and drools. Many with jaw dystonia adapt to this experience by not eating in public or by only ordering easy to consume foods in public like a beverage or soup.. Some adapt by wearing a bib, using only a spoon. Some after each bite wipe the lips with the spoon to catch inadvertent drips as one does when feeding a baby
5. swallowing
Patients report that difficulty swallowing is frustrating and occasionally seems life -threatening. The experience they describe seems not the same as choking on an object blocking the channel, in which case the Heimlich maneuver may help dislodge it. They report that the problem swallowing seems a malfunction of the message from the brain to the throat to swallow.
Some say that if they slow down and do not hurriedly take one last bite, this slowing down helps make the swallowing more intentional. Some report that they can trigger the muscles of swallowing by reminding them of their range. To swallow a gulp of water safely they may take the first gulp and spit it out in the sink. Then they can easily swallow the second. This idea of triggering by doing the opposite action is like a muscle exercise.
Scans of swallowing reveal challenges inside the throat, physical impediments and the efficiency of the swallowing. Some patients report that food does not always go all the way down or even comes back up. Some have been advised by clinical staff to swallow twice to ensure that all went down. These aspects of dystonia are of great concern to patients who often want to hear of strategies to cope.
6. speaking
When the patient has trouble arranging the jaw to form words, speech is often affected. The mechanics of jaw movement and sound production have been studied with some insights even from ventriloquists.Professional ventriloquists try to speak with mostly movement of the tongue and less of the jaw or face. Their profession has found that there are 19 letters that are fairly easy to say this way- a,c,d,e,g,h,i.j,k.l.n.o.q.r.s.t.u. x and z. However 7 are difficult -b, f, m, p, d w. y. To make those sounds the ventriloquist may substitute letters such as d for b, eth for f, n for m, t for p, thee for v.The person with jaw dystonia however may not be able to use those strategies however because the tongue also may have less mobility than normal.
Patients with jaw dystonia report that when they are excited or under stress, the speech problem can be worse.. When a person with jaw dystonia is in a difficult social situation, speaking to someone likely to be critical of them, they may tense up as anyone would but in their case the tension of the jaw only adds to the dystonic tension already there so the effect is even more pronounced.
7. normal casual involvement of mouth and jaw
People normally sigh when frustrated, lick their lips absently when they are dry, protrude the tongue to one side slightly as they concentrate, bite their lip when frustrated, purse their lips, even stick their tongue out on purpose as they experience various moods. Dystonia seems to not shut down those instincts and motions but may make them more jerky or delayed in timing. Whether these actions are impaired, occur less often or more often with dystonia may be useful to study in terms of ability of the brain to control fine movement.
8. medications
Medications can interfere with muscle function in the face and jaw. The survey on the face examined some of the concerns about such medication and dystonia.
After injections of botulinum toxin patients occasionally report a temporary side effect of problems swallowing. In most cases this is resolved on its own. That fact itself may provide insights about how the body is able to recover from swallowing problems.
9. smoothness of response
Patients who have problems opening or closing the mouth sometimes report that there are stages in the process with progress in jerks. This may be similar to what is experienced by those with cervical dystonia trying to raise the head. The first tiny movement is easy, the next stage is very hard and the final goal of head very high looking at the sky is again quite easy. It is the middle stages that are difficult. That pattern may be worth study in the mouth opening also.
10. sensory tricks
People with jaw dystonia have noticed some sensory tricks. Jaw pain sometimes seems less if they put an object in the mouth casually, a tooth, pencil, even a dental floss device. They report that this object seems to register in the brain to make the jaw function more normally. This is similar to the experience some report about chewing. Many nearly gag on a small sip of water, but can handle thicker beverages like milkshakes well. Some report that they have trouble chewing a slippery food such as a noodle or apple slice, as if the brain cannot locate and register this object precisely but they can handle and chew well a dry object of definite dimensions like a potato chip or a cashew nut.
When a person hears that someone has problems chewing, one might assume that thinner and more liquid food would be easiest. Yet that does not seem the situation for those with dystonia who report that they sometimes nearly choke on their own thin saliva. This suggests that the brain registers what is in the mouth and where it is, and dystonia may be a deficit in registering the presence of these substances, as if a slight numbness. Dystonia may also be a flaw in moving the food around easily, or a combination of both problems. Eating hard candy may be dangerous for someone with dystonia since hard candy has the definite dimensions that may register well but for them chewing may be so unpredictable and inefficient that there is risk of choking.
D How to ask
Source of question ideas
patient reports, biographies, clinical studies
E, Comments of patients
first signs
There was something wrong with my jaw and people could not understand my speech
jaw
My jaw crunched hard to one side
My jaw started to move on its own
My jaw was always opening
My jaw would not close properly
teeth
I notice I clench my teeth a lot, and that’s not good for them
My teeth chatter a lot from the tremors
tongue
I could not stick my tongue out straight – it would deviate to one side
I had lots of tongue rolling and jaw movements
eating- chewing, swallowing
I have trouble chewing and swallowing so I mash up my food
I made the mistake of trying to eat a sandwich while walking and started to choke
I was able to stop choking by drinking a bit of water to get down the sandwich
I was unable to chew anything crunchy or hard or that needed biting down on
It became really hard to chew food since I could not close my mouth
It hurt to swallow
I have excess saliva because of the swallowing problems
It took me forever to eat
Starting to choke on what I was eating I threw myself down on the floor and it worked
I was choking on my own saliva
Each day I sort of dread choking
sleeping
I had trouble sleeping because my jaw kept opening and my neck tightened
speaking
coping
I write down messages for the pharmacy or post office and people look at me strangely
When I am around my inlaws I have much more trouble speaking
treatment
We tried a few mouth guards at the dentist’s but they did not help
After the injection I had trouble swallowing for a few days
With injections of botulinum toxin I can chew again
F. Question categories:
lips
tongue
chew
swallow
sens tricks
talking
G. Questions asked
surveys 7, 28
face, mouth, jaw, tongue
6 28 face 10 34 86 3
7 41 jaw,mouth 18 24 81 3
28 5 face,mouth 15 18 82 2
max no. respondents 28-41
total questions 42
likely type of dystonia face, mouth, jaw, possibly others
percent of all respondents doing survey 41 of 508 or 8%
H. Results
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1. lips
-Lips
5.00% I frequently lick my lips involuntarily
7.50% I have trouble pursing my lips
2.50% I have a fine, fast tremor of the lips
17.50% My lip sometimes pulls sideways
15.00% My lip sometimes pulls upwards
10.00% My lips sometimes involuntarily clamp together
2.50% I often play a woodwind or brass instrument
47.50% I have no lip oddities with dystonia (7-1)
-Lips
20.00% My lips sometimes have a tremor or are shaky
20.00% My lips sometimes freeze up or go stiff
80.00% My control of lip movement seems normal (28-7)
(small number of respondents to this question)
2. teeth
-Teeth
31.71% I grind my teeth more since I got dystonia
36.59% My teeth sometimes clench involuntarily7
34.15% I have pain in my jaw that I thought at first was from my teeth
17.07% A dentist has told me the problem is not from the teeth or gums
29.27% I have no problems regarding my teeth and dystonia (7-3)
-Have you wondered if your teeth were OK because your face hurt so much?
39.29% Yes
60.71% No (6-7)
-Teeth
60.00% My teeth clench against my will
40.00% I grind my teeth involuntarily
40.00% I have more frequently by accident bitten my tongue or cheek
20.00% I have woken in the night noticing I just bit down hard on my tongue
by accident
40.00% My teeth have ground down a bit from teeth clamping
20.00% My teeth grind so much their grooves start to line up
20.00% I have lost a tooth from clenching my teeth so much
20.00% I have had no changes with my teeth due to dystonia (28-5)
(small number of respondents for this question)
3. tongue
Tongue
25.00% I have no problems with my tongue
15.00% My tongue occasionally hurts
27.50% With dystonia I more often bite my tongue by accident
7.50% My tongues sometimes causes me intense sudden pain
12.50% My tongue moves around more often than it used to in my mouth
37.50% I have good control of my tongue motions
5.00% My tongue sometimes hands out the side of my mouth (7-4)
-Tongue and mouth
40.00% I can easily move my tongue all around my mouth
40.00% It is hard for me to move my tongue to some positions around my mouth
20.00% My tongues seems to move on its own sometimes
20.00% My tongue is sometimes wobbly
20.00% My tongue sometimes involuntarily pushes against my teeth
0% My tongue sometimes seems to burn
20.00% I get occasional sharp pain in or under my tongue
20.00% It is easier to lift my head if I open my mouth
0% It seems like if I stick out my tongue I can move my head more easily
(28-6)
(small number of respondents to this question)
4. mouth – opening and closing
20.00% It is hard for me to open my mouth
7.50% It is hard for me to close my mouth
10.00% It is hard for me to keep my mouth open
5.00% It is hard for me to maintain my mouth closed
17.50% My jaw clamps shut sometimes against my will
7.50% When I open my mouth it goes very widely open in nearly a grimace
7.50% When my mouth is very wide open there is some relief
47.50% My mouth opens and closes the normal way (7-2)
-Do you find your mouth opens when you try to raise your head?
3.85% Yes but I can control it
7.69% Yes and I can’t control it
88.46% No (6-32)
-Despite how odd it may look, does it give relief to open your mouth wide?
39.13% Yes
60.87% No (6-33)
5.. jaw and mouth motion
20.51% When I open my mouth the opening is symmetrical
30.77% When I open my mouth the opening is off to one side a bit
48.72% When I open my mouth wide I sometimes hear a click
15.38% When I open my mouth to one side or the other, there is a
difference in how much there is an audible click
7.69% There are more clicks on my dystonic side than on the side
without dystonia
7.69% On the dystonia side when I open my mouth to one side
I can hear several distinct clicks that seem from different locations
28.21% When I open my mouth there is no delay before the mouth moves
5.13% When I open my mouth there is a slight delay before the mouth moes
35.90% I can control my jaw normally (7-5)
-Jaw
40.00% My mouth opening and closing seem normal
40.00% My control of my jaw seems normal
0% My mouth involuntarily opens
20.00% My mouth involuntarily clamps shut like a trap
0% My mouth has clamped shut so hard it chipped or broke a tooth
20.00% My jaw sometimes goes painfully out of alignment
20.00% My jaw sometimes moves up and down uncontrollably, chatters, tingles
80.00% My jaw sometimes aches or feels cramped (28-8)
(low number of respondents for this question)
6. symptom progression
-Have your symptoms changed over time?
5.56% Some of my symptoms, like lip licking, eventually went away
19.44% My dystonia moved to a new lcoation eg. from cheek to jaw
13.89% My swallowing problems started after dystonia in the face
11.11% Some of my symptoms have gotten less over time
27.78% My symptoms have stayed stable and not changed in intensity
or location
13.89%
27.78% (7-11)
-Has your ability to open and close your mouth changed?
7.41% Yes it was hard to close it and its now hard to open it
3.70% Yes it was hard to open it and now it is hard to close it
88.89% It has not changed (6-31)
7. saliva production
-Saliva and hoarseness
43.24% I clear my throat more often since dystonia
16.22% I seem to produce more saliva since dystonia
2.70% When eating I sometimes have a little drooling
13.51% When speaking I sometimes have a little drooling
10.81% I use a spoon more often when eating to clean up around
my mouth because of problems processing the food
2.70% unsure
37.84% not applicable ( 7-8)
-Saliva production and clearing your throat
40.00% My saliva and throat clearing are normal
20.00% I seem to have more saliva since dystonia
0% I seem to have less saliva since dystonia
60.00% My mouth is often very dry since dystonia
40.00% I am on medication that may be making my mouth dry
20.00% I clear my throat more often since dystonia
20.00% I often have so much saliva I want to spit it out or I worry I’ll gag
(28-9)
(low number of respondents to this question)
8. drinking beverages
-drinking
5.41% It is hard for me to purse my lips to drink from a straw
18.92% I prefer to drink from a straw to sipping from a cup
8.11% It is hard for me to purse my lips to drink out of the hole
in a cup lid or from the hole in a pop tin
5.41% It is hard for me to purse my lips to drink out of a pop or juice bottle
56.76% I have no problems when using a straw, cup or bottle to drink from
(7-15)
-Is it hard for you to close your mouth enough to drink from a straw?
7.41% Yes
92.59% No ( 6-22)
-Is it hard for you to close your mouth enough to drink out of a pop tin?
11.11% Yes
88.89% No ( 6-23)
9. eating – chewing, breathing while eating
-These questions ask about technical problems with equipment when eating.
2.70% I have accidentally bitten down so hard on a plastic fork that it broke
10.81% I have accidentally bitten down so hard on a stainless steel knife
or fork that I thought I might break my tooth
13.51% I have accidentally jabbed myself with a knife or fork
48.65% I am able to control the knife, fork and spoon well as I eat
0% unsure
32.43% not applicable ( 7-14)
-Chewing
63.16% I can chew normally
5.26% When I chew there is a slight delay in my jaw motions
5.26% I have trouble chewing small hard items like rice or pills
2.63% I have trouble chewing slippery items like noodles
13.16% I have trouble chewing large hard items like raw apple
15.79% I have trouble moving around in my mouth large items like hard candy
2.63% I prefer to chew distinct dry item sthat can be easily softened such as
a cashew nut
15.79% I cannot chew gum since dystonia
13.16% I most easily can eat soft foods like applesauce, yogurt, mashed potatoes
15.79% When I eat it is easier to process food if I put sauce on it (7-7)
-Breathing and eating
33.33% I have no problems with timing breathing while eating
33.33% I sometimes start to cough when eating
6.06% Food sometimes comes back up through my nose or mouth
6.06% unsure
30.30% not applicable ( 7-10)
-Chewing
0% It is painful to chew
40.00% I have trouble synchronizing hewing and there seems to be a delay
40.00% It is sometimes hard to move food around in my mouth
40.00% Food gets stuck more often in my teeth since dystonia
40.00% I sometimes have trouble getting the food to all stay in my mouth
0% When I chew, my jaw sometimes goes out of alignment
40.00% Chewing with my mouth open is easier than with it closed
60.00% not applicable ( 28-11)
(small number of respondents to this question)
-Chewing
40.00% I have no problems chewing
20.00% Chewing is difficult because my neck tilts to one side
20.00% Chewing is difficult because my chin pulls in
0% Chewing is difficult because my neck tilts up
20.00% Chewing is difficult because my neck tilts down
40.00% I am messier when eating since I got dystonia
40.00% I often spill food as I try to put it to my mouth
40.00% I eat in private because I am embarrassed at how I look
(28-10)
(small number of respondents to this question)
10. swallowing
-Swallowing
34.21% I swallow normally
21.05% I have a little trouble setting up to swallow and swallowing clear
liquids like water
31.58% It is more difficult for me to swallow if I am in a hurry
7.89% It is easier for me to swallow liquids with a bit of thickness like
milkshake or cream soup
10.53%I hold the cup to my lips longer before I swallow
28.95% If it sometimes so hard to swallow I nearly choke
13.16% My swallowing problems seem to be mostly about the timing
of the swallowing
23.68% I think my mouth and esophagus are still normal structurally
5.26% When I have trouble swallowing, it helps if I go to the washroom and
quietly spit the first swallow into the sink, then the second gulp
of liquid is easier to swallow (7-9)
-Have you had a barium, X-ray or other swallowing test?
28.57% Yes
45.71% No
2.86% unsure
22.86% not applicable (7-23)
-swallowing
20.00% I have no problems swallowing
40.00% I have occasional problems swallowing
20.00% I have frequent problems swallowing and have had to change my diet
to allow for them
40.00% It is harder for me to move around pills in my mouth of swallow them
0% I sometimes feel like a bubble pops in my throat, making me cough
40.00% I have had little crises and nearly choked a few times
0% I only have problem swallowing briefly, after botulinum toxin injections
(there were few respondents to this question)
-swallowing strategies used
60.00% I have no problems swallowing
40.00% It seems like thicker liquids are easier to swallow than thin ones
like water
40.00% It helps if I drink water occasionally as I eat
20.00% It helps if I don’t try to talk to anyone when I eat
60.00% It helps if I burp occasionally, as if I am realigning something
20.00% It is easier to swallow if I slow down
40.00% It is easier to swallow if I use a straw
20.00% It is easier to swallow if I eat a beverage with a spoon (28-13)
(low number of respondents to this question)
11. speaking, singing
-ability to speak and sing
34.29% It is hard for me to arrange my mouth sometimes to speak
14.29% It is hard for me to arrange my mouth sometimes to sing
45.71% I can still speak and sing normally most of the time
5.71% unsure
17.14% not applicable ( 7-17)
12. background
-Before mouth dystonia did you play a flute, clarinet, saxophone, oboe, bassoon?
8.82% Yes
91.18% No (7-18)
-Before mouth dystonia did you play a French horn, trumpet, trombone, tuba/?
2.94% Yes
97.06% No ( 7-19)
13. tremor, spasms, twitches
-tremor, spasms, twitches in the mouth area
10.81% I sometimes have tremor in the lips
18.92%I sometimes have tremor in the jaw
21.62% My mouth makes frequent involuntary twitches
51.35% I have no tremor or spasms or twitches in the mouth area ( 7-6)
14. sensory tricks
-These questions ask about actions you have discovered that seem to reduce the dystonia.
11.43% My dystonia seems less if I have a toothpick or straw in my mouth
14.29% My dystonia seems less if I touch my tongue to the roof of my mouth
17.14% My dystonia seems less if I touch my finger to my lips
22.86% My dystonia seems less if I touch my chin
2.86% My teeth clench less if I chew gum
5.71% When I burp the discomfort seems less after swallowing
11.43% I have no dystonia at rest but only when I speak
2.86% I have no dystonia at rest but only when I chew
25.71% My dystonia is constant and I have not found any activities that change it
(7-20)
-Do you avoid doing the wide mouth opening or sensory tricks if people are watching?
54.55% Yes
45.45% No (6-34)
15. coping
-As a musician with mouth dystonia have you tried various strategies to deal with it?
8.57% I have trouble forming an embouchure to blow on the instruments
0% I have tried a different mouthpiece
0% I have switched to a different instrument
5.71% I have not had to make any changes
88.57% not applicable (7-22)
-things you have tried to help with dystonia
0% Chewing gum keeps my teeth from clenching
50.00% I am not able to coordinate my jaw to chew gum
0% My dystonia is less if I briefly ice massage my face
0% Chewing is less painful if I apply cream to my chin or ear before a meal
25.00% My dystonia is less if I put a toothbrush or stir stick in my mouth
0% My dystonia is less if I physically lift up my cheek
0% My dystonia is less if I gently bite down on a piece of plastic
50.00% not applicable (28-14)
(low number of respondents for this question)
-(Are there) other actions you have noticed that affect the dystonia?
75.00% Yes
0% No
25.00% The dystonia is less when I cough (28-15)
(low number of respondents for this question)
16. treatment
-injections of botulinum toxin
8.82% I have had injections in my tongue
11.76% I have had injections in my cheek
20.59% I have had injections in my jaw
29.41% I regularly get such injections
29.41% I have not had such injections (7-24)
-These questions ask about the effect of botulinum toxin injections?
40.00% I have not had injections
40.00% Injections reduced my pain
20.00% Injections reduced the tightness and pressure
0% Injections made it easier to open and close my mouth
0% Injections made it easier to chew
0% Injections helped me
20.00% Injections made no difference to my condition
40.00% Injections seemed to cause me some new problems ( 28-18)
(low number of respondents to this question)
17. devices to assist
-These questions ask about devices and appliances
0% I tried a mouth orthotic or dental splint and it helped
20.00% I tried a mouth orthotic or dental split and it made no difference
0% I tried a mouth orthotic or dental split and it cause discomfort or
new problem
0% I changed the mouthpiece on my musical instrument because of dystonia
and it helped
0% I changed the mouthpiece on my musical instrument and it did not help
0% I use a mouth guard but only at night
0% A mouth retainer seems to pull my muscles
80.00% not applicable (28-17)
(low number of respondents to this question)
I. Analysis
The results of this survey could be blended with results from the survey on dystonia that affects the face.
Lip involvement seemed rare.
17.50% reported the lips sometimes pull sideways,
15.00% reported that the lips sometimes pull upwards
10.00 % reported that the lips involuntarily clamp together
Tooth involvement seemed more common.
36.59%- 60.00% reported involuntary teeth clenching.
31.71%- 40.00% reported teeth grinding
39.39% reported they had wondered if they had dental problems
27.50%- 40.00% reported involuntarily biting down hard on the tongue or cheek
10.81% reported involuntarily biting down on a fork or knife
2.70% reported they had accidentally bitten down so hard on a plastic fork that it broke
tongue control
20.00% reported the tongue sometimes seems to move on its own
20.00% reported the tongue is sometimes wobbly
20.00% reporting the tongue sometimes pushes involuntarily against the teeth.
tendency to close mouth
20.00% said that opening the mouth was a problem
10.00% said that keeping the mouth open was difficult
17.50% said their jaw clamps shut sometimes against their will.
tendency to open mouth
8.11%-11.11% reported problems drinking out of a pop tin
7.50% reported problems closing the mouth
7.50% said their mouth stays open in wide position nearly a grimace
7.50% said that having the mouth very wide open brings some relief.
5.41%-7.41% reported problems pursing lips to use a straw
5.41%. reported problems drinking out of a bottle
5.00%. reported problems maintaining the mouth closed
opening the mouth to assist in lifting head
11.54% reported they open their mouth to help lift their head
7.69% said they cannot control the opening of their mouth as they lift their head
3.85% said they can control the opening of their mouth when they lift their head
When the mouth is open, 20.51% reported the opening was symmetrical while 30.77% said it was off to one side
mechanics of mouth opening
48.72% report they hear a click sometimes when they open their mouth wide.
5.31% report there is a slight delay as they try to open their mouth.
The phenomonen of clicks has also been reported on the dystonic side with those with cervical dystonia. It may bear study.
dryness and saliva
Respondents differed in their reporting of mouth dryness. It is unclear if the varying reports were due to some answering who did not have mouth dystonia, or due to affects of medication.
The survey did find significant evidence of changes in mouth dryness or saliva production.
40.00% report they are on medication that may be making their mouth dry
20.00% – 43.24% report they clear their throat more often since dystonia
16.22% – 20.00% report they seem to produce more saliva
2.70% – 13.52% report they have a little drooling as they eat or speak
0% report they seem to have less saliva since dystonia
The change in production of saliva may merit study to see whether there is greater production or less swallowing to get rid of it, with a result of saliva pooling. Since saliva pooling can occur in cerebral palsy and Parkinson’s disease, this phenomenon in dystonia may if understood help also understand those conditions.
Patients report lack of coordination of the mouth. lips, jaw, tongue with the result that sometimes saliva just slips out inadvertently.
eating
Problems chewing can have significant impact on life. The mechanics of eating require aligning the jaw, opening the mouth, arranging the tongue and teeth appropriately to allow food in and then moving it around and processing it. Any one of these stages could be affected by dystonia.
It is not clear if the problems with the lips, tongue, jaw are based on physical lack of range of motion or simply on delay of response. The effect overall however is that for some people just consuming food becomes a problem.
40.00% report that food gets stuck more often in the teeth
40.00% report it is hard to get food to stay in the mouth
5.26% – 40.00% report delay in jaw motion
15.79% report trouble moving around hard candy in the mouth
15.79% report difficulty chewing gum
Though this survey was not about cervical dystonia, it is clear that some respondents also have cervical dystonia. 20.00% reported chewing problems due to neck tilt, 20.00% due to the chin pulling in and 20.00% problems due to neck tilting down. The survey on neck dystonia may also be of use to combine with results of this survey on mouth and jaw.
Coughing while eating was reported by 33.33%
chewing strategy
5.26% -40.00% have trouble chewing or moving small hard items like rice or pills
15.79% find it easier to eat if they put sauce on food
13.16% say they most easily eat soft foods like applesauce, yogurt, mashed potatoes
13.16% report they have trouble chewing large hard items like raw apple
2.63% have trouble chewing slippery items like noodles
2.63% prefer distinct dry items that can be easily softened
Pain when chewing
34.15% – 39.29% report that they have pain in the jaw or face that they at first thought was from the teeth
0% say it is painful to chew
social comfort eating
40.00% report they are messier when eating since dystonia
40.00% that they often spill food
40.00% say they eat in private because they are embarrassed at how they look
How people cope with eating challenges may also provide insight however into the mechanics of dystonia. If the problem with dystonia is failure to promptly and efficiently respond to brain commands for motion, then one way to cope may be to make that command more dramatic. To ask for exaggerated motions may be one strategy and 40.00% report that they find it easier to chew with the mouth open than with it closed.
In some cultures however chewing with your mouth open is a social taboo.
swallowing
40.00% have occasional problems swallowing
28.57% -40.00% report that they sometimes nearly choke
20.00% report they have had to change their diet to allow for problems swallowing
strategies for swallowing
40.00% use a straw to assist with swallowing a beverage
40.00% say it helps if they drink water occasionally as they eat
31.58% report that it is more difficult to swallow if they are in a hurry.
20.00% say it is easier to swallow if they slow down.
20.00% say it helps if they don’t try to talk to anyone as they eat
20.00% eat a beverage with a spoon to assist with swallowing
speaking and singing
Respondents report that speaking and singing are sometimes affected by jaw or mouth dystonia. Difficulty is also reported by those with vocal cord dystonia though the patterns seem different and are studied in a separate survey.
In this study
34.29% say it is sometimes hard to arrange the mouth to speak
14.29% say it is sometimes hard to arrange the mouth to sing
tremor, spasms, twitches
Tremor or twitches are reported by 21.62% in the mouth, 18.92% in the jaw and 10.81% in the lips
People in the general population also experience nervous twitches. Those with tremors of the lip, mouth or jaw due to dystonia report that occasionally the general public may misinterpret their twitches as nervousness. It is possible that a tension producing situation may make tremors worse for those with dystonia if they now have two reasons to produce tremor – both the dystonia unpredictability and the added twitch of nervousness.
Sensory tricks
Those with dystonia of the mouth and jaw seem as creative as others with dystonia in terms of frequent experimentation with what might reduce their symptoms. Some have discovered sensory tricks.
22.86% say the dystonia is less if they touch their chin
17.14% say the dystonia is less if they touch a finger to the lips
14.29% say the dystonia is less if they touch the tongue to the roof of the mouth
11.43% say the dystonia is less if they put a toothpick or straw in their mouth
The nature of all of the sensory tricks above is to add a new sensation. It is not clear if this new sensation is a distraction for the brain, that momentarily makes it attend to something other than dystonia, or if the touch is a comfort that provides some reassurance simply of touch or if there is a brain message that reduces the dystonia in a classical sensory trick situation.
Holding a toothpick in mouth may provide a physical prevention of closing in a way that is somewhat socially acceptable. It is also possible that having to hold a toothpick or toothbrush in the mouth activates in the brain or restores a more normalizing message of control of the mouth, and in some way reminds the brain of what normal is,
The phenomenon of reminding the brain of what normal is, a trigger to exercise the messaging system, is also reported when people try spitting to activate swallowing, or when people flex and stretch their fingers to regain control over a finger that tends to bend. These brain reminder strategies may also be muscle reminder strategies and may merit study.
Lived Experience With Dystonia 