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
is.
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
problem
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
useful.
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
values
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
respiration
teeth
bladder, bowel
buoyancy in water
chill or sweat – see also appearance – sweat
ear – fullness – see also movement – audible click
eye
leaden, heaviness
nausea, vomiting, digestion
G. – Questions asked -survey number, question number
surveys 2A and 23
H. Results
symptoms
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
-fatigue
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
(24-5)
2. digestive- nausea, vomiting
-digestion
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
-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)
-pulse
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.
fatigue
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.
digestion
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.
Lived Experience With Dystonia 