Researchers have noticed that sometimes dystonia changes, moves to other body parts, occasionally goes into remission, sometimes worsens, sometimes stabilizes.
Patients have reported not just long term shifts but often daily ones as they try to understand why it seems worse, or why it seems relieved, with a keen desire to ease it . Newly diagnosed patients are often anxious to know where this all is headed, the prognosis based on the experience of others.
Some patients report not just the progress of dystonia but what seems to be the progress of their body trying to fight it. Because the human body is designed to combat invaders, some patients speculate that what is happening may be partly the victories of their own defenses against dystonia, or the interplay of the two forces. This feature leads to uncertainty about how much of the progression could be changed by patient effort, with resultant intense risk of guilt if the condition worsens. Alternative medicine treatments that seem to offer improvement may actually be seeing normal ups and downs of the development of the condition, and claiming the ups are due to their intervention. The natural patterns of progress of dystonia are therefore important to study, for research understanding but also for patient information.
B. What seems useful to study further
Individuals are not always able to see even their own patterns easily.There is no rating scale they can use to calibrate if tilt or gait or pain is worse today than yesterday. They have a gut feeling about how the condition is changing and have many theories about what leads to these shifts, from heat, weather, diet, stress, exercise to simply attitude. It would be useful to collect data about the changes patients experience, to help them see any patterns there are and to help researchers see patterns for the wider dystonia community. Researchers will understand the mechanics of what such patterns reveal.
C. Comments from clinical studies and researchers
-Dystonias are generally progressive
=Dystonia is highly variable in its manifestations
– Because dystonia is a dynamic disorder that changes in severity based on posture and activity, the development of reliable rating scales to evaluate it is problematic.
– Dystonia has a variable nature, making it difficult to predict the prognosis of this disorder
– Musicians should be educated in advance about the risk of occupational dystonia so that they can recognize the condition in its early stages
– Systematic studies regarding long-term outcome of musicians’ dystonia are limited.
– The prognosis of dystonia is difficult to predict
The fact that dystonic postures change in severity based on posture and activity led one dystonia study group to observe “This feature of dystonia has made the development of reliable rating scales to evaluate dystonia severity problematic”
D Comments from patient experience
At first I’d have small twitches and then they’d go away for months
At first it felt more like an urge to move the head back and forth
At the start it was just a slight tremor in one had when I tried to write
I didn’t have any neck problem and then one day it was just there.
I just woke up one day and found it hard to talk
It came on fast. Driving I had to jam my head against the roof to stop it moving
It hit fast. Over one week my neck turned to one side, I got dizzy, my neck turned
It hit me very fast, as if a huge monster had stepped on me
It started when I was seven, had cramping and had to sit down and rest a lot
It started with a tremor in my head like I was always saying no
My dystonia started with the feeling my head was too heavy
My first symptoms were so tiny that doctors called them insignificant
My symptoms started slowly with just a tiny twitch in the neck
The first signs were of my head shaking. People made fun of me
The head shook mostly as I sat still and focused my attention on something
I was unable to keep my head still
change each day
Dystonia changes every day
Each day had so much uncertainty
I’d have anterocollis one day and retrocollis the next
It’s hard not knowing day to day how I’ll be feeling
Mornings are worst
My cramps got worse later in each day
My tremor was nearly gone in the morning but as I got tired it got worse by noon
Some days I function well and others I can barely walk to the fridge
One day we feel like we are doing fairly well, and the next day can be almost unbearable
Sometimes the dystonia escalates and the entire body cramps up
For weeks I was writhing around like the exorcist
My dystonia is up to new tricks
It is natural for us patients to wonder what is coming next
My days go in cycles – good, better, bad
It seems like my symptoms worsen with ovulation and menstruation
change over long periods of time
I was told the symptoms start gradually, get worse and then stabilize
The neurologist could not tell me of any typical progression of dystonia
The unknown of it terrifies me
My hand symptoms started to spread to my feet and back and neck
My condition stayed the same for 7 years and then changed
My condition went into remission twice
Over 8 years it spread to both of my hands and legs
The dystonia progressed rapidly
My neck has been deviating to the left, the head sometimes being parallel with the shoulder.
This guy heard of my condition and said to me “Well it could be worse” and
I answered, “Yes, it probably will be”
change with weather, location, known change in circumstance\
The head shaking got worse. It happened when I read a book or watched TV
My head tilt is more prominent when I try to walk
Someone told me if I had another pregnancy my symptoms would worsen
Before an electric storm my dystonia is worse. I’m a living barometer
flares, storms, unpredictable extreme attacks
I still have flares every few days, with intense pain
E What to ask
Source of question ideas:
-research studies, patient reports and biographies
F. Question categories
body part- change in area, asymmetry , direction up or down
change over time – months, years
first and later signs of dystonia
other illness – and effect on dystonia
pain or pressure – amount in a location –
stress, relax, effect
time of day
triggers- body actions
triggers, storms, attacks
weather, season, altitude
worse , better, same other situations
G. – Questions asked -survey number, question number
surveys 2B and 24
2B 107 sym prog 11 17 83 3
24 12 sym progres 7 7 80 1
max no. respondents 107
total questions 25
likely type of dystonia all
percent of all respondents doing survey 107 of 508 or 21%
(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)
-Did your dystonia start gently?
22.55% Yes it was very mild at first
17.65% Yes it was only occasional at first
13.73% No it was intense from the start
1.96% No it was as frequent from the start as it is now
31.37% It has gotten more intense over time
4,90% It has gotten less intense over time
3.92% It got worse then it got less intense over time (2B – 7)
-What was your first symptom of dystonia?
44.12% It started with the muscle pulling in one direction
30.39% It started with tremors
37.25% It started with a muscle getting tight
2.94% I am not sure or can’t remember
8.82% not applicable (2B-8)
-Who was the first to notice your dystonia?
73.00% I was aware of it before others were
15.00% Others noticed it before I did
10.00% Others noticed it about the same time as I did (2B- 10)
-How old were you when you first had symptoms of dystonia?
8.91% From birth or early childhood
15.84% In later childhood or the teen years
14.85% As a young adult
56.44% As a middle aged adult
3.96% As a senior (2B – 11)
-My age when I started having symptoms of dystonia
3.57% 0- 5 years
14.29% 6-10 years
14.29% 11-20 years
10.71% 21-30 years
14.29% 31-40 years
17.86% 41-50 years
14.29% 51-60 years
10.71% 61-70 years
0% 71-80 years
0% above 80 years (22-2)
-My age on first getting the diagnosis of dystonia
0% 0-5 years
3.57% 6-10 years
14.29% 11-20 years
17.86% 21-30 years
17.86% 31-40 years
21.43% 41-50 years
14.29% 51-60 years
10.71% 61-70 years
0% 71-80 years
0% above 80 years ( 22-3)
2. change in body area affected, pain or pressure location
-Has the dystonia moved through different parts of your body?
50.00% No it stayed in one place
50.00% Yes it moved to another place (19-67)
-body part affected
31.22% It only affects one part of my body
5.82% It disappeared or got less in one part but moved to another
22.75% It stayed the same at the first part and moved to another
11.64% It affected several parts of my body but all on the same side
8.99% It affects parts of my body on the other side
33.33% It affected parts of my body that are connected to each other such as
leg and trunk, face and neck
18.52% It affected parts of my body that are not connected to each other
such as neck and leg
10.05% It seemed over time to move up my body
13.23% It seemed over time to move down my body (2A -33)
-Have your symptoms changed over time?
50.60% The dystonia spread to other body parts
7.71% The dystonia left some body parts but moved to others
40.24% The dystonia pain got worse
25.06% The dystonia pain got bad but stabilized
9.88% The dystonia pain got less
2.89% The dystonia seemed healed, cured
9.64% The dystonia was in remission but came back (1-4)
-Do you find that dystonia has a pattern that is somewhat predictable?
47.33% no (1-17)
-Did the dystonia move from one body part to another?
13.86% It moved from my lower body to upper body
24.75% It moved from my upper body down to lower body
36.63% It did not move
13.86% I noticed no pattern in the movement (2B -9)
-Eventually did one muscle that caused dystonia settle down but a previously silent muscle become activated to have dystonia?
72.00% no (15-45)
34.74% The pain is sometimes throbbing
12.63% Over the years the pain has gotten less
43.68% Over the years the pain has increased
34.21% The pain is different in different parts of the body at
the same time -eg. one muscle cramped, another overstretched
16.84% not applicable (2A- 24)
-Has your dystonia gotten better in some parts of your body and worse
59.18% No. It is the same as always in any areas of my body affected
17.35% not applicable (2B-17)
3. change over course of the day
-Is there a pattern to your pain and time of day?
16.93% It seems less for the first hour after waking
31.22% It seems most in the late afternoon and evening
6.35% It gets better over the course of the day
43.39% It gets worse over the course of the day
7.41% It is mostly gone at night
16.93% It is intense at night
21.69% Not applicable ( 2A-26)
(those who do not have pain may have found this question inappropriate)
-patterns of times of day
20.00% My dystonia does not change over the course of a ay or night
40.00% The dystonia is less in the morning or after a rest
0% The dystonia is less in the evening
20.00% The dystonia is bad when I am eating
60.00% The dystonia is bad when I am tired
80.00% The dystonia is bad when I am emotional and trying to talk
20.00% The dystonia is least at night
20.00% The dystonia can suddenly create intense pain in the night
20.00% It it easier to chew if I was recently sleeping
80.00% The dystonia is less when I am happy and relaxed ((28-16)
(few people responded to this question)
-change over the day
58.33% My symptoms are less just after waking
16.67% My symptoms are worse just after waking
16.67% My symptoms are less in the middle of the day
41.67% My symptoms are worse in the middle of the day
0% My symptoms are less in the evening
66.67% My symptoms are worse in the evening
41.67% My symptoms are less in the middle of the night
0% My symptoms are worse in the middle of the night
8.33% I have not noticed any daily patterns with my symptoms (24-1)
-How do you deal with the daily changes?
21.74% Each change scares me
39.13% I accept the ebb and flow and just ride it out
39.13% I seek medical help if a change is signficant but have developed
patience with it (21-16)
4. change with weather, season, altitude
-Is there a pattern to your dystonia and the weather?
16.23% It seems worse in hot weather
8.90% It seems better in hot weather
36.13% It seems worse in cold weather
2.09% It seems better in cold weather
9.95% It seems worse in sunlight
7.85% It seems better in sunlight
40.84% I have not noticed any pattern with weather and dystonia (2A-27)
14.29% My dystonia is worse before a rainstorm
23.81% My dystonia is so sensitive to weather it is like I am
a weather forecaster
71.43% My dystonia does not seem to change when weather changes (23-22)
4.21% It seems worse at high altitude
1.05% It seems better at high altitude
0.53% It seems worse at low altitude
1.05% It seems better at low altitude
2.63% It seems better in a wet climate
13.16% It seems worse in a wet climate
48.42% I have not noticed any change related to geographical location
8.95% Not applicable (2A – 28)
16.67% My dystonia is worse if there are rainstorms in the area
8.33% My dystonia is worse at high elevation, in mountains, on airplane
8.33% My dystonia is worse if there is a strong wind in the area
33.33% My dystonia is worse on hot days
33.33% My dystonia is worse on cold days
58.33% I have not noticed any changes in my dystonia related to weather ( 24-2)
-Does vibration near you affect the dystonia?
25.00% Yes, it makes it worse
16.67% Yes, it is comforting and it makes it better
58.33% No, it has no effect (19-45)
5. change with hormones
-Is your dystonia affected by hormonal changes?
0% The dystonia seems less when I am menstruating
16.33% The dystonia seems more intense when I am menstruating
2.04% The dystonia seems less when I am pregnant
0% The dystonia seems more intense when I am pregnant
0% The dystonia seems less when I am breastfeeding
0% The dystonia seems more intense when I am breastfeeding
0% The dystonia got less after menopause
14.29% The dystonia got more intense after menopause
14.29% I got dystonia first only after menopause
44.90% Not applicable ( 4-21)
(this question clearly was not deemed applicable to a large group
of respondents and might have been better targeted for women or
for women of childbearing age)
6. change with body position
-When you change position does the dyston discomfort change?
34.15% No, the dystonia stays the same
19.51% Changing position reduces the dystonia for quite a while
6.34%^Changing position makes the dystonia worse for quite a while
24.39% Changing position makes the dystonia less and then it gets worse
and worse over just a few minutes
15.12% not applicable ( 2A-8)
-These questions ask about actions that seem to affect the dystonia
42.86% My symptoms are worse if I jump up and down
28.57% My symptoms are better if I swim in a warm pool
42.86% My charley horse cramps are worse when I drive a car
42.86% My symptoms are worse if a child runs at me and
tackles my physically (24-4)
(the number of respondents to this question was small)
7 change with effort physical exertion – fatigue
-At times when normally muscles tense up to do work, do you find your dystonia also tenses up?
32.69% My dystonia is worse for a little while after I carry groceries or
rake the lawn or move furniture
43.27% My dystonia is worse for a long time after I carry groceries or
rake the lawn or move furniture
18.27% Physical labor does not change my dystonia
7.69% Unclear (2B – 3)
-Does your dystonia get worse when you are tired?
18.99% no (1-7)
-What is your experience with fatigue and flare-ups?
21.05% I am always tired
47.37% I am tired some days more than others
39.47% My dystonia seems pretty constant
50.00% My dystonia definitely has flare ups or storms some days (19-68)
8. change with other stressors
-Have you noticed any situations where the dystonia seems worse?
74.36% It is worse when I am tired
44.62% It is worse when I am in a hurry
74.36% It is worse when I am upset
9.23% The dystonia does not seem to change in any situation ( 2A- 20)
-At what times is dystonia worse for you?
40.57% It gets worse when I am excited
75.47% It gets worse when I am tired
66.04% It gets worse when I am worried
10.38% It does not change even when my emotions change ( 2B-2)
-Does your dystonia get worse when you are excited or under other stress?
8.02% no (1-8)
-Does it feel like your body is unusually tense now in little crises?
17.65% no (20A-39)
-These questions ask about other pain messages besides dystonia.
11.76% If a new crisis is big, the dystonia seems less for a minute
11.76% If a new crisis is urgent, the dystonia seems less for a minute
41.18% If there is a new crisis, the dystonia seems worse and a nuisance
because I want to fix the other crisis
5.88% Not applicable ( 20A- 33)
9. change with other illnesses
-Is the dystonia worse when you have another minor medical challenge?
31.68% It is worse when I have a headcold
27.72% It is worse when I have the flu
18.81%It is not affected by cold or flu
38.61% Not sure
5.94% Not applicable ( 2B-5)
– Do any sounds trigger your dystonia?
68.42% no (19-41)
-Does bright light seem to trigger your dystonia?
81.58% no (19-42)
-Do smells trigger your dystonia?
100% no (19-43)
– Do any tastes in your mouth trigger the dystonia?
94.59% no (19-44)
11. storms, attacks
-These questions ask about attacks or storms of dystonia
50.50% My dystonia is constant each day and does not have huge
outbursts or storms some days
30.69% I do have attacks or storms of dystonia some days
8.91% Before an attack I feel tingling or pins and needles
1.98% Before an attack I feel numbness
7.92% Before an attack I experience visual or auditory changes
19.80% I have no warning before a day of dystonia attack
4.95% Not applicable (2B – 12)
-attacks of dystonia, storms
87.50% My dystonia is nearly constant and there are no attacks or times
when it is worse
0% Before a storm I feel dizzy
12.50% Before a storm I feel very tired
0% Before a storm I yawn uncontrollable
6.25% Before a storm I have electric pulse feelings, pins and needles,
0% I have lost consciousness during an attack or storm (23-20)
-attacks or storms of dystonia
90.00% My dystonia seems pretty constant and I do not have attacks or storms
0% My dystonia is occasional but mild and I do not have big attacks or storms
0% Before an episode I feel itchy
10.00% Before an episodes I feel jittery, fidgetty, unsettled
0% An storm often seems traced to a recent change in my medicine
0% A storm often seems traced to a recent infection
0% A storm often seems traced to adjustments in my deep brain
stimulation controls (24-7)
(the number of respondents to this question was small)
-These questions ask about episodes, attacks, storms of dystonia
60.00% I have not had episodes or storms. My dystonia is quite constant
20.00% When I am having a storm, my dog stays close, licks me, lies near me
0% After a storm it helps to have a sugary drink and eat chips
20.00% Not applicable (34-15)
12. change over course of years
-How has your dystonia changed over the past years?
55.10% It became more intense over time
10.20% It became less intense over time
14.29% It got worse for a few years and then stabilized
4.08% It got worse for a few years and then a little better
5.10% It went away entirely for a little while or a long time
7.14% It never changed over the years (2B – 15)
-changes over the years
8.33% My symptoms have remained stable for years
58.33% My symptoms got worse over the years
8.33% My symptoms got better over the years
33.33% Some symptoms got worse but some got better over the years
16.67% After years of stability, a new symptom developed
0% I have not had dystonia long enough to answer this question (24-3)
-Do you find that over time the pain from dystonia is registering less?
23.53% Not yet
35.29% No (20A -36)
-Can you now sleep in positions that earlier were too painful?
3.16% Yes, often
18.95% Yes, sometimes
50.53% No. My sleeping has not changed over time with dystonia
9. 47% Not sure
17.89% Not applicable (2B – 16)
40.20% report that the dystonia started gently with mild or occasional
symptoms at first. 13.73% report that it was intense from the start.
The first symptom varied. 44.12% say it was muscle pulling in one direction, 30.39% say it was tremors and 37.25% say it was muscle tightening
73% reported they were the first to notice the symptoms and 15% said others noticed symptoms before the patient did
Age of first having symptoms seemed evenly spread over the age groups, slightly less common for early childhood. However age of actual diagnosis was higher, peaking in this study between aged 41-50 years. This confirms that delay in diagnosis is often a significant interval though the question does not capture if the delay was due to not seeking medical attention or not getting accurate diagnosis when seeking it.
spread of dystonia to other body parts
Half of those asked reported that the dystonia moved to a new part of the body. 31.22% reported that the dystonia only affects one part of the body.
Looking at the pattern of spread of dystonia:
33.33% said that the dystonia moved to adjacent body areas
18.52% said it moved to nonadjacent body parts
8.99% said that it moved to the other side of the body
10.05 % -13.86% said it moved up the body
13.23 % – 24.75% said it moved down the body
7.71% reported that the dystonia actually left some body parts but moved to others 17.35% reported that it got better in some parts but worse in others
There may be more precise patterns detectable were a survey to ask what type of dystonia was involved initially.
change over a day
Most patients noticed a pattern over the course of a day.
58.33% say symptoms are less after waking and 20% report it is easier to chew if they were recently sleeping.
43.39% said the dystonia gets worse as the day goes on.
41.67% say it is worse in the middle of the day
66.67% say it is worse in the evening
31.22% report that it seems worst in late afternoon and evening. The question does not capture if the dystonia itself changes or if there is growing fatigue of the muscles or with resisting the dystonic pressure
The theory that dystonia disappears in sleep is not supported. Though 7.41% report that it is mostly gone at night, 16.93% report that it is intense at night. 20% say that the dystonia is least at night but 20% say that the dystonia can suddenly create intense pain in the night
Most patients report changes due to other factors.
Many report that it is bad when they are tired – at 60%, 74.36%, 75.47%, 81.01%
80% say it is worse when they are emotional
40.57% – 91.98% say it is worse when they are excited
74.36% say it is worse when they are upset
66.04% say it is worse when they are worried
These numbers may lack precision partly because of the varying meanings of terms like excited, upset, worried as understood by respondents. The pattern however is clear that when the patient is dealing with other emotional situations, the dystonia seems worse.
During little crises 82.35% say that it feels like their body is unusually tense. The explanation may be not that the mind is having trouble handling stressors, or that the stressors cause dystonia, two frequent misunderstandings, but that the normal muscle tensing up for a crisis is added to by the already present tensing of dystonia.
Some patients have reported this oddity anecdotally that if they lost their keys or can’t find the remote their body seems to be telling them this is more of a crisis than their mind feels it is. The link between body and brain in terms of sensing tension merits study.
It seems that when the body shakes, when muscles tense up, the brain registers that immediately as an alert, that there is a challenge to the system. The natural tendency to ask a muscle to tense up for fight or flight is so familiar with the feedback from such tensing that the tensing itself is now seen as confirmation the crisis exists and is being addressed. People with dystonia report that their body seems on alert because they experience muscle tension even when they know there is no crisis – they have to tell themselves to not be upset at this feedback of crisis.
When people with dystonia who are in constant muscle tension exercise a dystonic muscle, the only change in its status would be for it to not tense up. The exercise then would be to on purpose try to relax and untense the muscle. This anomaly that exercise is to relax may explain why for some patients relaxation therapies, mediation, music, seem to have a positive effect, not necessarily about the muscle but about ignoring the muscle – to -brain message that ‘we are dealing with a crisis”
41.18% of those asked report that if there is a new crisis, the dystonia seems worse and a nuisance because they want to address the new crisis.
weather, altitude, location
Weather and altitude do not seem to be significant factors for most patients but affect a minority.
16.23%- 33.33% say it is worse in hot weather
33.33% -36.13% say it is worse in cold weather
Though 23.81% say their dystonia is very sensitive to weather, 71.43% say they notice no changes due to weather.
One factor at play may be not so much weather as the other consequences weather places on the body. Hot weather may exacerbate dehydration or sweating and those who have problems with swallowing or with sweat anyway with dystonia may feel more uncomfortable in the heat. If weather is very cold, people dressed to go outdoors may tense up their muscles naturally and this may simply add to the dystonic tension already there. However anecdotal reports of heat in particular being very soothing as a comfort for dystonia, with a few people also finding relief with cold packs, suggest that heat is a factor of great importance for muscle function.
Reponses to other environmental conditions vary with rainstorms affecting only 16.67% of patients, and high wind only 8.33%. Geographic location was not reported as a key factor with 48.42% reporting no change in the dystonia based on geographic location and only 1.05%, 4.21% and 8.33% reported that elevation had an effect.
Though many patients use vibration of a pulsing massager for comfort, the effect of nearby vibration is not universally pleasant. 58.33% reported that nearby vibration has no effect, 16.67% said it is comforting and 25.00% said vibration makes the dystonia worse. The question may not have been well framed however to differentiate adequately between vibration of a motor vehicle, a furnace, a passing train, a cellphone or electronic pulse on the dystonic muscle. A separate study of reverse sensory tricks examines the phenomenon of vibration.
Physical exertion is reported to have an effect on the dystonia, usually negative. 42.8% report that symptoms are worse if they jump up and down, and 75.96% report that after they carry groceries, rake the lawn or move furniture their symptoms are worse for a little while or a long time. 42.86% report that symptoms are worse if they drive a car and 42.86% report that their symptoms are worse if a child runs at them and attacks them physically. It is not clear however if some of those discomforts are due also to natural tensing of muscles due to heightened alertness.
storms. flare ups, attacks of dystonia
The number of people who report having attacks, storms or flare -ups varies possibly based on how the question is framed.
30.69% -report that they have attacks or storms
50%-60% -87.50%-90% report they do not have attacks or storms
The wide variation of reporting may be partly due to sample size of the various questions but also to the variation in understanding of the terms ‘attack” and storms’. For some the terms may mean times when the dystonia is a bit worse while for others they may mean only those unique times of crisis that require a trip to hospital.
Signs before a storm vary.
12.50% report fatigue, 10% that they feel jittery, fidgety, unsettled,
0% that they feel dizzy,, 6.25% -8.91% that they have electric pulse or pins and needles feelings like the skin is crawling, 1.98% say they feel numbness, 7.92% that they experience visual or auditory changes. 19.8 % say they have no warning before an attack.
change over years
Most reported that the pain changed over time.
31.37% -43.68% -55.10% reported pain got worse over the years,
4.90% -9.88% -10.20% -12.63% reported it got less over the years
34.21% reported that the pain differed simultaneously in various parts of the body.
3.92% reported that the pain got worse then better
14.295 -25.06% reported that the pain got bad but stabilized.
9.64% reported that they had a period of remission and then the dystonia returned
2.8% reported a period when the dystonia seemed cured
5.10% said it went away entirely for a little while or a long time.
Anecdotally some patients report that the pain is as bad as ever but their brain has learned to ignore it and became accustomed to it.
41.18% say the pain registers less
58.82% say it does not register less or at least not yet.
50.53% say their sleeping comfort has not changed over time
22.11% say that they often or sometimes can sleep in positions that used to be too painful.