16. Body condition symptoms

Symptoms – Body Condition

A. Context – background,

Researchers have commented about the highly variable nature of dystonia. Patients report other sensations occasionally and wonder if dystonia is involved.

The wide range of patient concerns seems to make precise diagnosis difficult. However if there are patterns to these other oddities, it may be possible to understand dystonia better.

B. What seems useful to study further

The symptoms patients report may give clues about what area of the brain is affected by dystonia. Patients with  dystonia often report concurrent vision or speech challenges. Patients with Parkinson’s disease similarly sometimes report changes in their senses. One area of useful inquiry has been blood flow in the brain, levels of neurotransmittters and the speed of transmission of electrical messages along the neurons. It is costly to do such tests on all patients. However a survey of symptoms may help identify what is likely going on in those areas.

1. speech

            -though a patient may technically have diagnosis

            of cervical dystonia, some with it report that they also

            have occasional speech problems. It is not clear if

            this means the dystonia is also in the jaw, mouth

            or vocal cords but  this seems possible.

            Those with cervical dystonia who are in a tense social

            situation have reported that as they tense up so does

            their jaw and they find it physically harder to shape words. 

            They have ideas to express but trouble

            pronouncing them. Many find that on the telephone

            they are not well understood and on a tape recorded

            message do not sound like they used to. Since

            technology for sound recording is highly advanced

            it would be possible to study the exact changes

            in pitch, volume, word shaping  that

            are impaired in such situations. One hypothesis is that

            dystonia causes minor muscle problems for speech 

            but that under stress the tensing up of muscles that

            comes naturally adds to the dystonia stress

            and becomes more audible. In effect it is now

            double stress on muscles of speech. This could be studied

            most easily analyzing ultimate production of speech sounds.

            It could also be studied from the production end,

            watching how the muscles tense up or move differently.

            -patients with dystonia of the vocal cords report many

            speech problems. However their problems are not identical

            and seem related to the nature of their vocal cord

            dystonia. Some are breathy, some whisper and some

            gasp. The differences are well documented

            in clinical studies.The conditions

            seem to respond quite differently to treatment.        

            The nature of the speech impairment is also worth studying

            though because many patients report times when it is gone

            and they can speak normally. This oddity that may be

            classified as a sensory trick likely has a

            logical medical explanation. Patients

            report surprise that they can barely talk but they can yell fine,

            or that they cannot talk in a normal voice but if they talk as

            a cartoon character or with an accent they can talk fine. Some

            report that they cannot talk well in nearly any situation but

            that when in crisis somehow talk fine for  a moment. Some report

            that they cannot talk normally at all but during the night in their

            sleep , family members say their talking is normal.

            What this suggests is that the mechanism of speech is not

            impaired -but that only the messaging to the muscles


            Many patients with vocal cord dystonia find it

            is reduced or disappears after a drink of wine or some

            types of alcohol or beer. Some have made careful observation

            of their own body and noticed what brands work, and even down

            to the minute when the speech improvement starts and

            how long it lasts One woman who is a public speaker has

            figured out when to drink gulp of wine in terms of minutes before she has

            to make a speech. One patient has even taped her speech change

            on social media.  It may hold  clues to what mechanism

            is involved in dystonia.

2, vision – does not seem affected by dystonia of neck, feet

            Pupil function does not seem affected by dystonia of the eyelids though

            not  being able to open the eyelids impairs vision so much that

            the person may be functionally blind

            Botulinum toxin can cause blurry vision or double

            vision for a time, or drooping eyelids. Medication for depression or anxiety can             affect vision

            Fatigue can affect vision

            Patients with Parkinson’s report sometimes spatial

            perception deficit. Does this happen with dystonia

            too? It does not seem to but is worth study.

            Patients with Parkinson’s sometimes report that

            they tend to steer in the direction they are looking.

            This happens with novice drivers normally and

            is part of learning to drive,  but with adult experienced

            drivers with Parkinson’s seems to happen in ways

            they wish they could control better. Does this

            happen with dystonia? Many people with dystonia

            have given up their driving licenses, of adjusted

            their driving distances and use neck braces,

            special seats. It may be useful to study what

            accommodations people are making, the limitations they

            now have and the fine tuning they are make to what the

            body is less able to do.

3. hearing -does not seem affected by dystonia

            However patients report that they sometimes have an

            extreme startle reflex to surprise sounds. This

            does not seem to be an auditory problem but a reaction


4. taste- does not seem affected by dystonia

            -however dystonia may reduce ability to chew for

            muscles in the jaw and ability to swallow may be

            hindered if dystonia affects muscles in the throat

            People with dystonia report normal hunger but some

            are  restricted in  what they can physically eat.

            -botulinum toxin may be linked to

            nausea, vomiting, abdominal cramps and

            this may affect desire to eat

            -botulinim toxin can have a side effect of

            drooling or constipation which suggests

            there is a digestive tract implication. It may be

            useful to study whether the toxin is briefly

            paralyzing muscles, working

            too well or in the wrong place and slowing down

            digestion temporarily.

            The disease botulism was linked to lack of

            gag reflex. It seems important therefore to make

            sure doses of the toxin are correct.

            It may be that  some patients are individually

            more sensitive to this toxin than are others.

            For a given patient allergy profile may be


5. smell  -does not seem affected with dystonia

            -however other medications may interfere

            with ability to smell and if nausea is a factor

            with botulinum toxin, nausea may also be

            triggered by some smells. It could be a useful

            area of research partly because the ability

            to smell which seems so basic is surprisingly      

            affected by some medical conditions. Covid 19

            for instance has been seen to disrupt ability

            to smell and as such presented an early

            indicator that covid 19 may be present.

6. touch- the ability to feel what you are contacting

            does not seem affected directly by dystonia

            though this is far from clear. Musicians with

            focal dystonia report odd sensations as they

            try to contact strings or musical instrument

            keys or mouthpieces with their dystonic

            fingers or hands, jaws.  It may be that dystonia

            is creating a change in the ability of the muscle

            to send back accurate feedback to the brain.

            It is an area of possible useful research to look

            at the accuracy of touch sensation, numbness

            and one way to do this is to ask patients about

            their experience doing daily activities like

            eating, using a phone dial or computer, walking.

            Dystonia may be a problem of

            muscle function but it may also be a problem

            of sensation.

            Patients with Parkinson’s disease often

            report numbness in fingers and toes, back of legs

            or lower back  It may be useful to study if patients

            with dystonia also experience numbness.

7. chronception – sense of passage of time

            This does not seem impaired technically with dystonia.

            Patients do not seem confused about date, time of day or

            the passage of time. However the pain of dystonia may make

            some periods of time seem long, such as waiting in line or

            trying to sit still for a photograph.

            The nature of dystonia to create sometimes jerky unpredictable

            movements may also make people feel that moments are divided differently as

            they go about their day trying to plan motions and navigate walking

            or lifting objects. The time may register as longer because it takes

            longer to do the tasks. However patients seem aware that this is taking

            longer and are not confused about the passage of time.

8. interoception – sense of internal needs such as hunger, thirst, needing to

            urinate or defecate. This does not seem affected by dystonia.

            However the phenomena themselves may be. Patients who

            are often thirsty and have a dry mouth may be reacting

            to botulinum toxin which can have that effect, or some

            oral medications that can have that effect. or just to low

            humidity in a room. The nature of thirst

            with dystonia may merit study because it often

            is reported by patients. Those with problems

            swallowing for instance have reported that they are thirsty

            but have trouble drinking and are more likely to gag on

            a bit of water or even their own saliva than on an actual

            chewable object like a clearly defined peanut. This oddity

            may be related to the fact that small amounts of liquid

            in the throat may not be registering enough in the sensory

            system to trigger accurate swallowing muscle action. In that

            case it may be that the swallowing muscles were

            not quite responsive enough, or even in a way numb. 

            The need to hydrate the body is crucial to survival.

            When a person has trouble swallowing liquids

            it is stressful.  It would be useful to study how patients have learned to

            cope and what high liquid content foods they consume

            for instance to register enough solidity to trigger the swallowing

            muscles – eg. applesauce, milkshake- but not to be so slippery           

            to chew that their jaw cannot effectively work with them(noodles,

            apple slices) or so solid their jaw cannot safely chew them into

            small enough bits and they risk choking (steak).

            Since many patients have figured out ways to cope with thirst

            and are getting enough liquid, but still have very dry mouths,

            some have reported they cope by taking in liquid to the mouth but

            just gargling it or moving it around to relieve the dryness

            and then spitting it out. Some report oddly that the muscles

            to spit out seem to work better than the muscles

            to swallow and that to spit out seems to remind the muscles

            of how to work and then the next gulp they can swallow

            more easily. This could be studied. It may suggest

            how the brain needs triggers and sometimes

            the kick start of doing the opposite motion. If

            this is accurate it may tell something useful about

            the brain’s messaging to muscles.

            Knowledge of need to urinate, defecate

            or eat or drink itself does not seem impaired

            Some medication such as botulinum toxin may have side- effects

            of constipation.

9.  cognition

            short term memory – in the hippocampus

                        Dystonia itself does not seem to cause memory

                        problems. However the pain of it, the exhaustion caused by it

                        may affect clear thinking and be distracting.

                        Some apparent short term memory loss may be due not to dystonia

                         but to medication given for anxiety or depression that can have side                            effects of memory loss

            ability to read

                        vision may be affected but the knowledge of how to process

                         words on a page does not seem affected

            ability to write

                        holding pen, pushing computer key or enter key may be affected

                        handwriting may be affected

            abstract thinking  -does not seem affected

            decision making – does not seem affected though emotions

                        may affect it

            prioritizing – ability to prioritize does not seem affected

            problem solving

                        -does not seem affected and even in many patients

                        seems to ramp up as they figure out creative ways

                        to cope.

            awareness of location, geographical

                        -does not seem affected


                        the patient still has the ability to make decisions

                        based on personal values

            ability to learn new information

                        this does not seem affected

                        Some studies suggest that dystonia may focus

                        the mind so that sometimes people have new insights,    

                        cut to the chase of arguments, get to the point quickly

10. blood flow

            The brain has 750 1000 millliters of blood flowing through it every minute

            Patients occasionally report discomfort in some areas of the skull

            and it may be useful to study blood flow.

11. neurotransmitter levels

             Clinical studies have identified involvement of several

            neurotransmitters in dystonia. Questions about mood fluctuation

            especially depression may be helpful.

12. speed of messages travelling along nerves

            -the brain generates electricity, enough to power a low watt LED light

            -there seems to be an interrelationship between electricity and magnetism

            and DBS patients for instance have to be wary of surgery

            or MRI procedures when they have the implants. The electric

            nature of the brain function and its relationship to magnetic

            pull may be a useful area of study..

            -some of the delay of reaction time,

            the gating phenomenon of pause before

            making a full motion and the overreaction

            and startle reflex may indicate disruptions

            in the electrical impulse transmission

            -some at home treatments for dystonia that involve

            electric pulses placed close to the area, such as

            TENS devices or even cellphones vibrating

            seem to upset or override the

‘           electric part of the dystonia message.

            The idea that electrical shocks can reset a program

            seems to have been used in earlier therapies

            for many brain conditions, with controversial

            results. Questions to try to probe deeper into the

            electrical messaging nature of dystonia may be useful.


C. Comments

from clinical studies and researchers

– Dystonia is highly variable in its manifestations

– The question of whether focal and segmental dystonias are separate and distinct or are forme frustes of generalized dystonia has not been entirely resolved

– There is an absence  of validated diagnostic markers

– At this time there is no test to confirm diagnosis of dystonia

from patient experience

Doctor, I feel knackered

My neck is rock hard on both sides

It feels like the meat from the muscles around my traps will fall apart

My head feels like a ten pin bowling ball

There was a deterioration in handwriting after writing several lines,

During one flare up, convulsions were so strong they seemed to lift me off the gurney

For a few minutes it feels like my abdomen has a bad stitch

D.  How to ask

 Source of question ideas: – patient reports, biographies, clinical studies

The questions in this one survey do not cover the range of mysteries about symptoms.. However questions from other surveys may add to the study.

1- speech – also see vocal cords section and effects on daily life surveys

2. vision- also see eyes section and effects on daily life

3. hearing -also movement section re audible clicks

4. taste  – no questions asked

5 smell – no questions asked though nausea as symptom may be related

6. touch – important area not fully questionned. Also see daily activities survey

7. sense of passage of time – no questions asked

8. sense of body position – also see surveys on movement

9. cognition -also see survey on mood,and survey on effects of treatment

10 blood flow – few questions asked

11. neurotransitter level – no questions asked

12. speed of neural message transmission – also see surveys on movement delay

F. Question categories

pulse, blood pressure



bladder, bowel

buoyancy in water

chill or  sweat – see also appearance – sweat

ear – fullness – see also movement – audible click


leaden, heaviness

nausea, vomiting, digestion

G. – Questions asked  -survey number, question number

surveys 2A and 23

H. Results


2A       217            symptoms        26            40                    76                                5

23        24            symptoms        18            24                    81                                3

max. no. respondents                 217

total questions                         64

likely type of dystonia  – all

percent of all respondents doing survey   217 or 508  or 42.7%

I. 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. body part

-What parts of your body are affected by dystonia?

            21.83% eyes

            22.02% face

            32.74% mouth, jaw

            31.75% vocal cords

            67.06% neck

            43.65% shoulder arm

            38.49% hand, fingers

            33.33% leg, foot, toes, trunk (1-5)

1. fatigue and other medical conditions


            66.67% I feel totally drained much of the time

            38.10% I rest or nap once a day

            28.57% I rest or nap twice a day or more

            23.81% I always feel heavy

            42.86%  Fatigue makes it hard for me to socialize

            61.90% It feels like my body is working nonstop to fight dystonia

            9.52% I am not experiencing any extra fatigue due to dystonia (23-8)

-effect on dystonia

            58.33% My symptoms are worse if I miss sleep

            41.67% My symptoms are worse if my allergies are acting up

            41.67% My symptoms are worse if I have had dental work done

            41.67% My symptoms are worse if I am getting a cold or flu

            25.00% My symptoms are worse before or during menstruation

            25.00% My dystonia seems less if I am dealing with other medical conditions

            25.00% I have noticed any change in dystonia linked to other medical conditions


2. digestive- nausea, vomiting


            22.73% I have not noticed any change in my digestion with dystonia

            13.64% I am more nauseated since dystonia

            27.27% I have abdominal spasms

            4.55% I have gained significant weight that I think goes with  my dystonia

            9.09% I have gained weight but it may be due to medication

            13.64% I have lost weight and I think that is due to dystonia

            0% I have lost weight but it may be due to medication

            9.09% My change in weight may be due to technical problems chewing

                        and swallowing

            9.09% My change in weight may be due to stress

            50% My weight has no been affected by dystonia (23-23)

3. breathing


            38.10% My breathing has not really changed since dystonia

            23.81% My pain is sometimes so intense I notice I am holding

                        my breath but when I remember to deep breathe, the

                        breathing is fine

            38.10% I have new problems breathing since dystonia (23-24)

4. temperature – chill , sweat

-When you touch the dystonic muscle is there a temperature difference compared to other parts of your body?

            13.81% Yes it is warmer to touch

            3.81% Yes it is colder to touch

            34.29% No there is no temperature difference

            33.33% Unsure

            14.76% Not applicable (2A – 7)

-body temperature and sweat

            66.67% I have noticed no change in my sweat rate since dystonia

            28.57% I sweat more since dystonia

            4.76% I sweat less since dystonia

            0% I sometimes feel I can’t sweat any more

            0% I sweat more on the top of my head since dystonia

            4.76%I swat more around my neck since dystonia

            0% I sweat more in the arms and legs since dystonia

            19.05% I sweat more in my sleep since dystonia

            4.76% My dystonic muscles seem warm to touch

            9.52% My dystonic muscles seem cold to touch (23-21)

5. sensation of sharpness, smooth, rough

-Do you have problems sensing if something is hot, rough, cold, sharp, smooth?

            8.11% yes

            91.89% no    (19- 77)

-Do you feel that you are sensing objects accurately for their texture, heat, location?

            66.67% I sense heat of objects as well as ever

            66.67% I sense location of objects as well as ever

            38.89% I can move small objects like pennies around as easily as ever

            50.00% I have some problem coordinating what I do but I still sense objects fine

            (20A -12)

6. buoyancy

-If you lie back in a bathtub or swimming pool, does dystonia seem to have changed the sensation?

            15.53% Yes my head feels oddly buoyant

            6.80% Yes my head feels oddly heavy

            32.04% No, there is no change for me in water

            33.01% Unclear  (2B – 4)

7. pulse, blood pressure

-Have you ever tried to have your blood pressure taken and the machine was not able to register it easily because your muscle was already so tight?

            12.62% Yes

            68.93% No

            7.77% Unsure  (2B – 6)


            56.52% I do not check my pulse

            39.13% My pulse does not seem to have changed since dystonia

            8.70% When I check my pulse it seems the same on either side

            4.35% M pulse on the dystonic side seems slightly delayed (23-18)

8. eyes, ears, teeth

-Do your ears feel plugged though you don’t have a cold?

            32.14% Often

            35.71%  Sometimes

            32.14% No  (6-6)

-Do your ears go into spasm?

            0% Yes, often

            18.52% Yes, occasionally

            81.48% No (6-20)

-eyes, ears

            34.78% I have more eye floaters since dystonia

            26.09% I feel more ear pressure – my ears fell full or swollen

            21.74% I hear popping sounds in the muscles on my dystonic side

            34.78% My vision has not changed since dystonia

            52.17% My hearing has not changed since dystonia (23-7)

-eyes, ears, neck

            20.00%  I sometimes hear knocking in my ears

            20.00% I sometimes have high pitched ringing in my ears

            60.00% I sometimes have neck pain

            40.00% My eyes scrunch up more often since dystonia

            60.00% There is a delay when I open one or both eyes (28-4)

            (this question has a low number of respondents)

J. Analysis

body part affected

The majority of survey respondents have some neck involvement. This is consistent with the higher incidence of cervical dystonia in the population than of other forms of dystonia.

The fact that the surveys asked for part of body affected not just technical diagnosis may have enabled respondents who have one type to also mention slighter affects on other body parts.  This may mean that the proportions of respondents does not match their technical diagnosis.

There are challenges filling out the surveys and it is less likely those with vision problems or problems sitting would have been able to do the surveys. 


Most patients report fatigue with 66.67% saying they feel totally drained much of the time and 66.67% say they nap once, twice or more a day. 42.86% say fatigue makes it hard to socialize and 61.90% say that it feels like their body is fighting nonstop against dystonia.   58.33% report that their dystonia is worse if they miss sleep.


Dystonia does not  seem to have significant impact on digestion or respiration. However some respondents report changes.

13.64% are more nauseated, 27.27% have abdominal spasms.

38.10% say their breathing has not changed but 38.10 % report some breathing problems.  The tendency to shallow breathe when in pain was noted by 23.81% of respondents.

perspiration and body temperature

Most patients report no change in their sweat rate  (66.67%) though 28.57% say they sweat more.  Only 13.8!% reported that the dystonic muscle felt warmer to touch.

sensation of heat, cold, texture

Ability to sense heat, cold, roughness, sharpness, smoothness does not seem affected in most cases. However ability to manipulate small objects was sometimes changed with only 38.89% saying they can move small objects like pennies around as easily as ever. The problem does not seem to be lack of sensation of the position of the objects, but lack of ability to move the muscles to manipulate the objects.

buoyancy and heaviness

Though some anecdotal reports suggest changes in buoyancy with dystonia, this was not confirmed by the surveys. Only 15.53% felt their head feels oddly buoyant. However the question may have been poorly framed because 33.01% found it unclear.  Some patients report that once they have had deep brain stimulation they no longer are able to swim . This suggests there may be a relationship between dystonia and buoyancy.

The sensation of heaviness in the head, and of ear congestion has been reported anecdotally by some patients. 67.85% of those asked said their ears feel often or sometimes plugged. In the general survey 26.09% reported more ear pressure.

pulse and blood pressure

Pulse and blood pressure do not seem affected. A small number reported problems having blood pressure tested with the blood pressure cuff (12.62%)

eyes and ears

Though blepharospasm is a the main way that dystonia involves the eyes, other forms of dystonia may have eye involvement. Those with cervical dystonia often report that they have trouble seeing straight ahead especially when their line of vision is angled most of the time also. 

Hearing and vision do not seem to change signficantly with dystonia,  with 52.17% reporting no change in hearing.  However 34.78% reported more eye floaters since dystonia.