Effects and Side Effects of Treatment
A. Context
Though some of the current treatments are successful, no treatment appears to have a 100% success rate. There is ongoing study to improve these treatments.
One can sense in clinical studies a frustration among researchers about the many unknowns of the condition. Patients report the same frustration. Though these surveys will not find a cure, it is hoped they may advance knowledge and reduce this frustration.
B. History
460 BC Hippocrates suggests rest as a treatment for stiff neck and for contraction
of tendons and the jaw.
1500 – Ambroise Pare, French surgeon tries orthopedic techniques. He puts people on a board face down, fastens bands and then strongly pulls ‘as hard as possible”
but ‘without violence’. He admits such tension sometimes is not tolerated
1700-1800-There is evidence that early therapies for the condition included
trying out cod liver oil, strychnine, arsenic, morphine, belladonna extract,
cocaine, electricity or even at one point putting an affected hand into
the belly of a slaughtered animal.
1820- Justinus Kerner, German physician sees patients who have dry eyes,
dry skin, gastrointestinal disturbances and weakness after
eating contaminated meat. He calls the culprit sausage poison. It is later
discovered that the condition is due to botulinum toxin, which can lead to
intense sweating, high skin temperature in a condition called botulism.. The
bacterium C botulinum is potent and works by blocking nerve function
and preventing release of acetylcholine in the brain, leading to paralysis
of some muscles. Left untreated the toxin can lead to increased weakness
swollen stomach, vomiting and respiratory failure
However the same toxin in later years and purified with small doses becomes
useful to temporarily relax muscles.
1865 – Andrew Taylor Still rejects traditional medicine in America and starts osteopathic medicine. He says the cause of disease is often dislocated bones, abnormal ligaments or contracted muscles, especially in the spine. He uses mechanical pressure on blood vessels and nerves. It isfound that some of this pressure causes ischemia – inadequate blood supply and necrosis -cell death.
1880s – Sir James Page, English surgeon notes that ‘bone setters’ caused a lot of injuries
1895 – Patients appear with a condition seemingly linked to eating bad
sausage, and the toxin they ate is identified as sausage
poison, (later called botulinum botulinus)
1913 – Albert Hoffa and Max Bohm study classical massage such as vibration, effleurage, petrisae and tapotement. They stroked out muscle masses, caught muscles between the fingers and thumb and tried to lift the muscle from the bone. They sometimes hit fingers against the body very fast.
1919 – Edward Schantz cultures the clostridium botulinum and isolates
the toxin. Later two strains of botulinum toxin , A and B, are identified/
1920 – Elizabeth Dicke, a German physiotherapist develops connective tissue massage. She strokes areas with fingertips and saysthat this influences blood supply, releases nerve impulses and creates reactions ‘in distant organs’
1930 – Surgeons try a new technique of heating electrodes inserted in part of the brain
to selectively destroy a small area. The pallidotomy procedure is done on
the globus pallidus part of the brain and aims to reduce involuntary movements.
It has however an unpredictable outcome.
1940s – Milton Trager, a medical doctor, tries to direct treatment to the patient’s unconscious mind. The patient is subjected to oscillation and rocking to get him to gradually relinquish control. This technique was called tragering
1950 – Ida Rolf, a chemist has an idea of manual manipulation to correct posture using gravity. Her program uses through ten sessions to correct balance and weight transfer. She believedsthat if a tissue is restrained and a nearby joint has to have balanced movement, tissue and joint will relocate in a more appropriate equilibrium. This technique is later called ‘rolfing’.
1950 – R. Meyers is the first neurosurgeon to treat movement disorders like
dystonia by creating lesions in the basal ganglia of the brain.
1950- A surgical procedure is developed to reduce tremor by precise destruction of a part of the thalamus of the brain. Effect on tremors is often positive but the
surgery is found to pose risks for speech or vision. Eventually it is often
replaced by deep brain stimulation.
1953 – Patient Donald Warren had brain surgery to assist him with Parkinsonism symptoms and inability to walk or talk. He woke able to speak, had no tremor and the dystonic rigidity of his left hand had changed. The doctors then investigated the use of surgery in the globus pallidus and thalamus for dystonia.
1956 – Dr. H. L. Parker, neurologist said that there is no known treatment of any value for those with twisted backs, necks and involuntary painful spasms. The only possible solution considered was to paralyze the neck in order to stop its involuntary motion. but even then the spasms continued and patients became bedridden
1960 – Moshe Feldenkrais from Israel has the idea of working with the brain’s plasticity. He wants to have patients examine habitual inefficient movements and then asks them to use different motions, very slowly, to retrain the brain. The gaol is to weaken old patterns and establish new ones.
1980 Dr. Alan Scott, a San Francisco ophthalmologist finds that if a patient had eyes looking different directions, strabismus, (crossed eyes), one way to help them was to cut away the muscle that pulled the eye to one side. However this destroys the muscle. He finds that another way to fix the problem is to inject botulinum toxin to temporarily weaken that muscle. He suggests using the botulinum toxin also on the muscles of people with blepharospasm. This weakens but does not destroy the muscles around the eye for those with eye dystonia.
1980s- Quebec neurosurgeon Claude Bertrand develops a surgical
procedure for people with severe cervical dystonia, where nerves believed
associated with the abnormally contracting muscles are severed while other
nerves to less affected muscles are left intact. This procedure is named
selective peripheral denervation or the Bertrand procedure. However
its effectiveness is not established and some patients in follow up studies
have significant complications.
2003- The US Food and Drug Administration approves the use of deep brain
stimulation as a humanitarian device exemption to treat chronic, intractable primary dystonia including generalized, segmental, hemidystonia and cervical dystonia. The results of deep brain stimulation arefrequently positive but the mechanism of how it works is not well understood and the control mechanism requires careful programming.
C. What seems useful to study further
1. problems to address
Patients usually consult doctors at first wanting a cure. Once patients learn that their condition currently has no known cure, they seek treatments to alleviate symptoms but they often report that treatment is the second preference and they still want research to be done to find a cure.
Few treatments seem to alleviate all of the symptoms. There are several areas that patients say they want addressed in evaluating treatments.
-pain Does it make the dystonia hurt less?
-daily activity Am I able to do things I need to do ?
-pressure Does my body feel pulled less?
-position Am I able to hold my body easily in a more normal position?
-tremor Do I have less shake, quiver, tremor, spasm?
-tightness Do my muscles relax now?
-sleep Do I sleep better?
-mood Am I able to be more cheerful, interested in the world, optimistic?
-social function Am I able to interact comfortably with others?
2. effects of a treatment and side effects
The medical profession logically looks at a problem and seeks an answer, so the key consideration about any treatment is whether it achieves the desired effect. This also is a concern of patients. However patients seem to prioritize side effect considerations more than doctors might. Scientifically a side effect may seem less relevant to whether pain killer reduced pain, whether the muscle relaxant relaxed muscles. However patients report that often the effect and side effect are equally impactful. If a treatment will provide cure, a temporary side effect may seem a small price to pay. However with incurable conditions, the trade off seems less clear. Patients who find that a treatment has a side effect of short term memory loss, dizziness or problems sleeping may consider those too high a price to pay.
Noticing the effects of a treatment is not always easy. Patients report occasional confusion when a change in their health occurs after treatment. They are unsure if the change is due to the dystonia or aging or an infection or the treatment. If the change seems due to a new pill, they are unsure whether it is better to change the pill or change the dose or just wait. These seem like small concerns in theory but for a patient enduring a new problem added to the original one, they may not seem as small.
3. limits of the study
The medical history of an individual patient is not known in these surveys. Whether a particular treatment worked for them may be very closely related to their genetics, their neurotransmitter levels, their past history. It is hoped that the surveys may show patterns but application to individual patients is not likely.
The effects and side effects of treatments are likely specific to the product used, and even to the brand. In that regard, asking if a given brand name pill caused a side effect would be useful but the surveys only ask about general categories. In that regard, the value of the surveys may be more that they are good questions that should be asked of any medication.
The surveys do not name specific medicines by brand. This decision was made for several reasons. The names of medications are often not clearly known by the patient. They may remember them vaguely and may not know how to spell them
The names of a given medication vary and many have two labels, which is often confusing for patients. The category a medication is in – anticholinergic, antidepressant, benzodiazepine etc. may not be known by the patient. The desire of the surveys also is not to promote or endorse any product. However it is hoped that patterns may emerge in the general questions nonetheless.
4. how to ask the questions
Many considerations were made about how to ask the questions. Some of the factors included:
-Patients are the experts on their own situation. Only they can tell accurately how they feel
-Signs of dystonia are objective and verifiable indicators others can see such as body tilt, tremor, rashes, gait problems. However patients also experience symptoms that others cannot see such as pain, muscle tension, pressure on the limbs, weakness. The questions try to open up the range of answers to let patients tell their full experience.
-An effort was made to not favor any particular response or to ‘lead the witness’. Writing questions that do this can be challenging.
eg.asking ‘You didn’t have much pain did you?” is too leading
Better is “Did you have pain after the procedure?
eg. asking potentially embarrassing questions has to not threaten the person’s self esteem
“Are you scared to go out even with friends?” is leading and suggests that
those who answer yes are somehow admitting to a fault
Better is “Do you feel comfortable going out with friends?”
eg. questions should not suggest reactions the patient may not have thought of or nudge them towards a certain answer
“Did you have any bad dreams at all, or nightmares or trouble sleeping?
Better is “Was your sleep affected by this medication?
5. use of surveys for frank response
Getting patient feedback about treatment seems to often be challenging for doctors. There are many factors that may interfere with accurate feedback
-if the doctor seems busy, the patient may not want to bother them
-if the side effect is small, the patient may be embarrassed to ask
-if the side effect is upsetting the patient may not be sure how to report their fear level
-if the effect is pain, the patient may be unsure about how much pain to report. To look strong some may underreport while others may report the same pain as higher
-the patient may be afraid to hurt the feelings of the doctor who they know tried hard to get a treatment for them that works
The surveys attempt to overcome some of those problems by presenting a situation where patients can be honest without repercussions. There is no threat to patient career, no insult to doctor competence. The information is pure science feedback.
6 Botulinum toxin
Botulinum toxin merits study not just for how much to inject and when and where. Its side effects seem to have not has as much study as it effects and some side effects concern patients.
People who developed botulism in earlier times were very sick. Botulism was found in food that was poorly processed, poorly canned, and was sometimes as a bacterium found in new honey, corn syrup, green beans, spinach, beets, asparagus, corn or fish. It was also found when bacteria got into a wound.
Botulism when first identified presented with these symptoms – difficulty swallowing, double vision, drooping eyelids, muscle weakness, blurry vision, slurred speech, difficulty breathing, drooling, irritability, dry mouth, paralysis, nausea and vomiting, abdominal cramps. constipation, slow reaction time, expressionless face, weak cry, floppy muscle tone, no gag reflex.
When patients report side effects of its use to treat dystonia, the side effects can sound remarkably like smaller versions of the effects of the toxin that led to real problems in earlier times.
Most of these side effects seem short lived, and most do not happen for all patients. However for some patients these side effects can be challenging and longer lasting. The surveys try to see patterns to these problems and, were a person to know medical history of individual patients. may be a useful resource to try to see under what conditions the botulinum toxin produces these other problems.
D. Comments from clinical studies and researchers
treatments in general
Although a few people have an excellent response to one or more medications with great improvement of symptoms, the vast majority experience only a mild or moderate relief of neck twisting and pain
To objectively assess the response to various therapeutic interventions, it is critical not only to use appropriate rating scales, but also to take into account the intervention’s effects on activities of daily living and quality of life.
Oromandibular dystonia is among the most challenging forms of focal dystonia to treat. It rarely improves with medication, there are no surgical treatments and botulinum toxin therapies can be complicated.
The age of the patient, the anatomic distribution of dystonia and the potential risk of adverse effects are also important determinants of the choice of therapy.
The etiology of focal hand dystonia is still considered idiopathic with successful treatment approaches still considered controversial
Treatments of writer’s cramp with muscle relaxation techniques, physical or occupational therapy, and medical and surgical therapies have been disappointing.
There is still uncertainty as to the ideal patient for surgery, the best target, the degree of benefit, the duration of benefit and the adverse effects for the various surgical procedures.
pills
Paradoxically some patients with dystonia benefit not from dopaminergic but from antidopaminergic therapy
Benzodiazapines are very dangerous and should be avoided if possible and taken only short term if used. They often impair sleep, lead to anxiety, are addictive and are hard to wean off safely. They actually suppress sleep
Antidepressants- suppress REM dream sleep. They can disturb the continuity of sleep and need careful monitoring. They reduce sleep quality.
Although a few people have an excellent response to one or more medications with great improvement of symptoms, the vast majority experience only a mild or moderate relief of neck twisting and pain
Medications may ameliorate symptoms for spasmodic dysphonia but rarely have a significant effect
Use of anticholinergic medications in patients with dystonia can potentially disrupt neurophysical abilities, potentially memory and attention
Most of the medicines have significant side effects
Pain medication is erratic. Some pills may help neck or spine pain but not leg pain
All of the medications used for dystonia seem to have limited benefit
Melatonin gets the brain in sync with dark and light day night regularity but it should only be used 12 weeks at a time. The body naturally produces melatonin and if you keep supplementing it the brain stops making it.
References to unpleasant – or worse – side effects echoes a common complaint of people who are attempting to control dystonia symptoms with medication. Their constant search is for a balance between symptomatic treatment and loss of other valued capacities, such as accurate memory and general alertness.
injections
Side effects for botulinum toxin include local redness, slight bruising from the injection needle, temporary numbness in the treated area, dry mouth, dry eyes, ‘flu like ‘ symptoms of fatigue, muscle ache,
Side effects of botulinum toxin have been studied and may include mouth dryness, conjunctival…swallowing difficulty, heart burn, constipation, bladder voiding difficulty, head instability, dryness of nala mucosa
By far the most common side effects of botulinum toxin relate to over weakening of the target muscles or unintentional weakening of nearby muscles
Side effects of some botulinim tox injections include weakness, dysphagia, anticholinergic side effects, dry mouth, ptosis (drooping eyelid), flatus incontinence
Botulinum toxin never fully restores the natural resting position. For our patients our goal is to improve head position by 50 to 70 per cent
Legislation in US requires that companies that produce botulinum toxin inform the public of the risk of spreading of botulinum toxin beyond the injection site.
Symptoms return as the effect of botulinum toxin wears off
DBS surgeries
Movement disorders may be induced by deep brain stimulation
The mechanism of action of deep brain stimulation in dystonia is poorly understood
Deep brain stimulation has proven effective in the treatment of several hyper- and hypokinetic movement disorders , such as Parkinson’s disease and many other MDs However, during stimulation of different anatomical targets other movement disorders may emerge, hampering the efficacy of the stimulation and posing new therapeutic challenges for the DBS programmer.
other surgeries
Limb mobilization had a highly variable outcome
There is still uncertainty as to the ideal patient for surgery, the best target, the degree of benefit, the duration of benefit and the adverse effects for the various surgical procedures. More work and careful observations are required.
Multiple surgical interventions have been performed, many of which have fallen out of favor
desire for more information
More work and careful observations are required.
F. Comments from patient experience
pills – types
I’ve tried every pill they throw at me
This was the seventh type of pill I had tried
pills what helped
If I have to go without medicine for 12 hours the dystonia returns in full force
That pill saved my sanity and my body and my life
The big improvement for me came when I started taking that pill
When I got off that pill I was able to think more clearly
When the pill is working I can even have a normal conversation
pills – what did not help
I found that medication does not really ease my daily pain so I only take it in crisis
I know this pill is great for some people but it did not work for me
Muscle relaxers did not help me
We tried many medications but not many worked.
pills- side effects
I was hallucinating because of some of the meds
I was reluctant to take any drug that could be addictive
Most of the pills gave me bad side effects, urinary infection, nausea or vomiting
My body does poorly on pain medication
Meds exacerbate my dystonia
Some of the meds were making me feel like a zombie
The meds have side effects and you exchange one beast for the next though it may be less
The pain meds made me so tired I could not take them before work or I’d be drowsy
Pills were not good for me because they just made me drowsy all the time
I am very grateful for the meds. They are a gift even with side effects
injections- first response
After an injection it took about 3 weeks to kick in and then wore off at 9 weeks
At first the injections didn’t do anything but two weeks later it was amazing
The first injections were painful
After a few days my walking was much better
After the injection I had a sore Adam’s apple
injections- when they helped
After the injections I could sleep through the night
After the injections I felt so well I nearly forget I had dystonia
After the injections I no longer had migraines
Between injections I am fairly well and can drive a car and walk nearly normally
During the pandemic with no injection appointment, my symptoms returned in spades
I had an injection of botulinum toxin and it was amazing- and no side effects
I stopped getting injections but without them was worse off so I went back to them
I’ve gotten botulinum toxin injections every 3 months for 20 years
The botulinum toxin helps me tremendously
The injections completely stopped the pain
The injections have worked for me for 20 years. I still play football
The injections helped with mobility
The injections in my gluteus help straighten my hip
The injections sometimes worked fantastically for me.
The injections went well and seemed to take about 30% of my symptoms away
The injections were a miracle and changed my life completely
The injections worked well and my posture got nearly normal
With injections my tremor improved
My dystonia became more quiet
I had less tremor
injections- when they did not help
The injections only made a slight difference for me
I had injections but they did not help
I tried 3 kinds of botulinum toxin with little effect
The injections do not help with pain
The meds don’t even scratch the surface of reducing the pain
The injections did not get the neck tilt under control
I was told injections would not reduce the pain much
In 20 years only twice did the injections really reduce pain
Once I had too high a dose for injections and lost muscle strength in my neck
The injections did not change the neck twist
The injections for two years did not give me much benefit but a new technique then did
The injections help with many of my symptoms but not the tremors
The injections in my cheeks did not reduce my speech problem
The injections relieved some of my neck tremors but not fully
The injections are hit or miss. Sometimes they give relief and sometimes not
injections- side effects
After the injections I sometimes had some minor issues swallowing for a few weeks
injections- over time
About 3 months after the injections, my condition gets bad again
The effect of the injection starts to wear off and then my foot starts to turn out again
The injections took a turn for the better after the third round
I’ve developed antibodies to botulinum toxin
At first the injections gave me some relief but in later years they were less effective
Over the years, injection effectiveness waned
The injections are not working any more at all
The results from the injections got less as years passed
DBS- when it helped
After DBS I could drink a glass of water with one hand. I was ecstatic
After the DBS I am no longer in pain and I sleep better
Because of DBS I no longer have to go to emergency for IV medicine
DBS helped control the neck tilt
DBS gave me my life back
DBS has changed my life for the better
DBS is not a cure but it changed my life completely
Eight years after the DBS surgery I feel I live a pretty normal life
I am glad I can change the DBS voltage, pulse width and frequency for my needs
I have done pretty well with the DBS and was able to get off some pills
Since DBS I can carry a cup of coffee without spilling half of it
Since DBS I’ve been able to get off some of the medication
Since the DBS I can brush my teeth and drink from a glass and write again
The DBS improved my neck tilt by about 60%
The DBS was successful and my hand could be perfectly still again
The DBS worked so well I was able to go backpacking again
I would do it again in a heartbeat
It helped my speech
The great thing is you can adjust the controls
I can drive my car again
DBS – when it did not help
At first the DBS programming was hard
DBS did not affect my muscle cramping
DBS – side effects
Before the surgery I had to shave my head and we bought a wig so I’d not be stared at
I had to become bald for the surgery but it was worth it
I was awake for the surgery and the drilling sounded like a helicopter landing on me
The DBS had some side effects – I drag some words out slowly
With DBS equipment it takes me longer to get through airport security but that’s OKI
I can’t bike any more
I can’t swim any more
My speech is worse
My balance and gait are worse
other surgeries
I had surgery and the moment they took the cast off the foot inverted again
The early surgeries involved casts and looking back that was not a good idea
After anaesthesia my dystonia was gone for a few days anyway
other treatments
I wear a neck cushion when I am driving
I use a neck pillow at night
A soft collar for my neck is as useful to me as a chocolate teapot
I stopped consulting with the different therapists because they were no help
general feeling about treatments
For a while it felt like doctors were experimenting on me and I was just a pin cushion
I feel very blessed to be getting the treatment I get
I sometimes feel like a lab rat
G. How to ask
Source of question ideas:
-patient reports, clinical studies
_________________________________________________________
H. Question categories
general satisfaction
confusion re effect or not
confusion of counteract treat, pills- interactions
first versus later effects – delay, reaction time
positive results
mixed results- pain, position, tremor, mood
negative results
timing, frequency
adjustments- dose, timing
withdrawal and stopping
duration of good effects
pills – for mood or change mood, for sleep or change sleep
body parts affected in addition- eg. eyes
injection effects
DBS effects
surgery effects
I. Questions asked
surveys 15, 36, 37
J. Results
effects, side effects
15 32 eff,side eff 22 62 83 6
36 4 eff side eff 10 10 80 2
37 4 eff side eff 10 11 78 2
max no. respondents 32
total questions 83
likely type of dystonia all
percent of all respondents doing survey 32 of 508 or 6.3%
K. 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. general
-How would you rate your experience with treatment so far?
47.68% Mostly helpful
43.46% Mostly ineffective
28.90% sometimes problematic for side effects (1-10)
-What was your general experience with treatments for dystonia?
25.00% Treatment really helped me, gave me my life back
0% Treatment reduced my pain
25.00% Treatment reduced my muscle tightness
50.00% Treatment reduced my tremors and spasms
0% Treatment did not make any difference to my dystonia
25.00% Treatment caused me minor side effects I could endure
50.00% Treatment caused me terrible side effects (36-1)
(low number of respondents to this question)
-Has the treatment improved your quality of life?
43.75% Yes, it improved it a lot
18.75% Yes, it improved it a little bit
12.50% It did not make much difference to my quality of life
6.25% No, things got worse for me
18.75% not applicable (15-16)
-How long did it take to see effects of treatments you were given?
0% Treatments had an immediate effect
25.00% Treatments took a few days to show an effect
50.00% Treatments took a few weeks to show an effect
100.00% Some treatments took longer than others to have an effect
25.00% I got used to the delay and thought of it as a whisper period
50.00% I found the delay stressful
50.00% I found some side-effects unpleasant but was told they would
go away over time
25.00% Some negative side effects did go away over time (36-2)
(low number of respondents to this question)
2. positive effects of treatment
-Did the treatment improve your posture?
18.75% Yes, significantly
21.88% Yes, a little bit
28.13% No
31.25% not applicable (15-17)
-Did the treatment reduce your pain?
12.90% Yes, significantly
41.94% Yes, a little bit
12.90% No. it had no effect on pain
32.26% not applicable (15-18)
-Did the treatment reduce the spasms or tremor?
35.48% Yes, significantly
35.48% Yes, a little bit
12.90% No
16.13% not applicable (15-19)
-Did the treatment get rid of the body message to have dystonia?
38.46% Yes, the dystonia itself seemed less
61.54% I still felt the dystonic body message (15-20)
-Have you ever withdrawn from treatment because you felt fine now?
6.90% Yes
93.10% No (15-23)
-After some medical treatments have you felt you were cured?
60.00% I felt a lot better but not cured
0% I felt completely cured
56.00% For a time I felt better but it came back
12.00% For a time I felt better but I had a new problem (15-12)
-Did positive effects of any treatment start within a week?
59.38% Yes
40.63% No (15-8)
-Did positive effects of any treatment take 2-3 weeks to be evident?
58.06% Yes
41.94% No (15-9)
-Did positive effects take several months to be evident?
33.33% Yes
66.67% No (15-10)
-Did positive effects of treatment last?
21.88% Yes the positive effects lasted 3 months and continued
46.88% Yes but after 2- 3 months they were less again
28.13% No they did not last
3.13% not applicable (15-11)
-Has medication affected your energy level?
3.45% Yes, it gives me energy
37.93% Yes, it makes me tired
34.48% No, it has no effect on my energy
24.14% not applicable (15-47)
-After treatment do you feel more cheerful?
17.24% Yes immediately
10.34% Yes, but not immediately
55.17% No, there is no real effect on my mood
17.24% not applicable (15-46)
-With treatment did one aspect of dystonia get better while another was to changed?
3.45% Tightness got less but there was still pain
20.69% Pain got less but there was still tightness
24.14% Spasms got less but there was still tightness
10.34% Spasms and pain and tightness got less but there was still pressure
34.48% There was some other combination of benefit and no benefit
17.24% No, all aspects of the dystonia got better
6.90% No, no aspects of the dystonia got better
13.79% not applicable (15-21)
3.. negative effects of treatment
-Has any medication or treatment made you drowsy?
17.24% Yes, a little drowsy
41.38% Yes, incredibly low energy
4`.38% No (15-28)
-Did negative side- effects start immediately?
37.93% Yes
31.03% No
10.34% not applicable- I had no treatments
20.69% not applicable- I had no negative side effects (15-13)
-Did negative side effects start within 2-3 weeks?
41.38% Yes
27.59% No
10.34% not applicable- I had no treatments
20.69% not applicable- I had no negative side effects (15-14)
-Did negative side effects change over time?
34.48% Yes, they got less
10.34% No, they stayed the same
17.24% Yes they got worse
10.34% not applicable- I had no treatments
27.59% not applicable- I had no negative side effects (15-15)
-Have you ever withdrawn from treatment out of frustration?
42.86% Yes
57.14% No ( 15-22)
4..sources of confusion
-Is it hard to tell if any new symptoms are due to dystonia or to treatment and medication?
15.63% Yes it is often difficult
28.13% Yes it is sometimes difficult
40.63% No, the difference is clear
15.63% not applicable (15-3)
-Is it hard to tell what is due to dystonia and what is just fatigue?
12.50% Yes it is often difficult
46.88% Yes it is sometimes difficult
40.63% No, the difference is clear (15-6)
-Is it hard to tell if some symptoms are from dystonia or from ordinary flu or colds?
3.23% Yes it is often difficult
25.81% Yes it is sometimes difficult
70.97% No the difference is clear (15-1)
-Is it hard to tell if symptoms are from dystonia or from allergies?
3.23% Yes it is often difficult
12.90% Yes it is sometimes difficult
64.52% No the difference is clear
19.35% not applicable (15-4)
-Is it hard to tell what is due to dystonia and what is just due to aging?
9.68% Yes it is often difficult
25.81% Yes it is sometimes difficult
64.52% No, the difference is clear (15-5)
-Is it hard to tell what symptoms are from dystonia and what are from other stressors?
15.63% Yes it is often difficult
37.50% Yes it is sometimes difficult
46.88% No, the difference is clear (15-7)
-Is it hard to tell if your vision problems are due to dystonia?
25.81% Yes
35.48% No
38.71% not applicable (15-2)
-For each round of the same treatment do you sometimes get different results?
10.00% Yes it is very unpredictable
66.67% Yes it is a bit unpredictable
6.67% No, the results are consistent
16.67% not applicable (15-24)
5. drug interactions
-These questions ask about pills for other medical conditions and whether they seem to affect the dystonia.
100.00% My dystonia is not affected when I take allergy pills
0% My dystonia is worse when I take allergy pills
0% My dystonia is less when I take allergy pills
66.67% My dystonia is not affected when I take antibiotics
0% My dystonia is worse when I take antibiotics
0% My dystonia is less when I take antibiotics
0% My dystonia is not affected when I take oral steroids
33.33% My dystonia is worse when I take oral steroids
0% My dystonia is less when I take oral steroids (37-11)
(low number of respondents to this question)
6. adjustments of medication
-If treatment was successful was the dose sometimes then increased?
68.97% Yes, sometimes
13.79% No
17.24% not applicable (15-29)
-If you had negative side effects were you told to continue treatment to ‘give it a chance’?
32.14% We waited a short time interval to see if minor problems went away
17.86% We waited longer than I wanted to, to see if minor problems went away
21.43% If there were minor problems I was taken off immeidately
42.86% not applicable (15-3)0)
7. pills – time, frequency, adjust dose
-These questions ask about the process of adjusting dose or changing medicines for mood, pain, anxiety or depression.
66.67% My doctor has been very good to help me gently wean off medicine
that was not working
33.33% My doctor did not tell me how to wean off medicine
33.33% My pharmacist told me how to wean off medicine
33.33% I had some trouble weaning off medicine or misunderstood
dose instructions
33.33% I have had severe body shakes
33.33% For some time I was unable to sit still and had to hang onto
a table edge
0% For some time I was so shaky I was unable to hold a cup with one hand
33.33% Even though I was dealing with prescription dose adjustments I
sometimes felt l looked like a drug addict
33.33% not applicable ( 37-9)
(low number of respondents to this question)
8. pills- positive effects
-Since the treatment have you been sleeping better?
7.14% Yes, a lot better
17.86% Yes, a little better
3.57% No, my sleep became less comfortable
50.00% No, there was no effect on my sleep
21.43% not applicable (15-40)
-These questions ask about pills for mood stabilizing, anxiety or depression.
0% The pills make me calmer
33.33% The pills make me sleepier
33.33% The pills make me feel jacked up and agitated
33.33% I need the pills but feel guilty for needing them
0% I do not feel badly that I need the pills and just accept that right now
I need them
33.33% The pills have some negative side effects in my case
66.67% not applicable (37-7)
(low number of respondents to this question)
-These questions ask about pills that help you sleep
66.67% I have not been prescribed pills to help me sleep
0% The pills helped me get a good sleep
0% The pills helped me wake refreshed
33.33% I woke up groggy and foggy
33.33% I woke up dissatisfied and angry
33.33% I seemed to miss out on a comfortable stage of half sleep when
taking the pills
0% The pills made me stop dreaming
33.33% I had strange dreams when taking the pills (37-6)
(low number of respondents to this question)
9. pills – negative effects
-Has medication slowed your ability to talk?
3.45% Yes, significantly
10.34% Yes but only a little bit, briefly or occasionally
44.83% No it has not had that effect for me
41.38% not applicable (15-53)
-Has medication made your eyes dry and irritated?
10.71% Yes a lot
17.86% Yes but only a little bit, briefly or occasionally
21.43% No there is no effect on eye irritation for me
50.00% not applicable (15-52)
-These questions ask about the effect on your eyes of medication.
25.58% I am sleepier and close my eyes more on some medication
16.28% My vision seems less precise on some medication
4.65% I have distorted vision when on some medication
11.63% I have visual disturbances when on some medication
11.63% unsure
53.49% not applicable (5-9)
-On the pills is it harder to remember dates or errands?
24.14% Yes, a little bit
3.45% Yes, very difficult
27.59% No, there is no effect that way
44.83% not applicable (15-49)
-Since the treatment are you having more vivid dreams?
6.90% Yes
75.86% No
17.24% not applicable (15-48)
-Do the pills cause dizziness?
6.90% Yes often
17.24%Yes but only a little, occasionally or briefly
24.14% No they do not cause dizziness
51.72% not applicable (15-51)
-Since treatment have you had odd vision and depth distortions/
3.57% Yes often
21.43% Yes but only a little bit, briefly or occasionally
25.00% No there has been no such effect
50.00% not applicable (15-55)
-On the pills do you feel more impatient?
0% Yes a little bit
10.71% Yes I am a lot more restless and impatient
42.86% No there is no effect on my patience
46.43% not applicable (15-50)
-Have the pills you take led to weight gain?
17.86% Yes, significant weight gain
3.57% Yes just a little weight gain
25.00% No, my weight is the same as usual
7.14% No in fact my weight has gone down
46.43% not applicable (15-56)
-Has medication slowed down your reflex to catch something that is dropping?
10.71% Yes it has really slowed my reflexes
10.71% Yes but only a little bit, briefly or occasionally
32.14% No it has not affected my reflexes
46.43% not applicable (15-54)
-Do the pills cause nausea?
3.45% Yes often
6.90% Yes but only a little bit, briefly or occasionally
41.38% No there is no such effect for me
48.28% not applicable (15-57)
-Since treatment have your hands or legs become shakier?
10.34% Yes significantly
10.34% Yes but only a little bit, occasionally or briefly
37.93% No there is no such effect for me
6.90% No in fact my hands and legs are less shaky
34.48% not applicable (15-58)
-Have you had chills after some medications?
12.00% Yes
88.00% No (15-27)
-Have some treatment made your throat very dry?
20.69% Yes unbelievable parched
24.14% Yes but only a bit dry
55.17% No (15-25)
-These questions ask about effect of pills on your memory and thought.
33.33% I am able to think more clearly because the pain is less
0% I am able to think more clearly because I am calmer
33.33% My reaction time is less and if I drop things I less often can
catch them (* flawed and illogical question)
33.33% I am a bit more forgetful when taking the pills- eg. whether
I turned the stove off or left the light on
33.33% I sometimes forget what street I parked on or where I am going
33.33% Some places look completely different to me depending on what
direction I approach them from
0% I have gotten a bit lost in places I have known for years
66.67% I am more forgetful but I am not sure if this is because of the pill or worry
66.67% I have more problems multi-tasking and remembering several
things I am trying to do at once
0% My mind seems fine still
33.33% not applicable (37-8)
(low number of respondents to this question)
-To deal with dry nose or mouth do you use a room humidifier?
20.69% Yes
44.83% No
34.48% not applicable (15-60)
-pain killer medications
29.41% Medications dull the pain for me
17.65% Medications eliminate the pain for me
29.41% Pain medications do not end the dystonic pressure I feel
52.94% Pain medications do not help with the muscle tightness
11.76% Pain medications make me dizzy
35.29% Pain medications make me sleep(y) and less alert
23.53% I have not taken pain medications
0% unsure
11.76% not applicable( 20A-16)
-pain killers
66.67% They reduce pain but not muscle tightness
13.33% They reduce pain and muscle tightness
26.67% They do not affect my pain (20A-14)
-pill side effects
100.00% Some pills have caused me weight gain
0% Some pills have caused me weight loss
100.00% Some pills have caused me dry mouth, ‘cotton ball’ mouth
0% Some pills have given me stomach ache, nausea or vomiting
0% Some pills have led to diarrhea or constipation
100.00% Some pills have made me dizzy.
100.00% Some pills have given me blurred vision
50.00% Some pills have given me the shakes, especially if the dose
is changed too quickly
50.00% Some pills made me feel numb like a zombie
100.00% It seems like I am particularly sensitive to pills and get side
effects other people don’t get
0% I have had no problems of side effects from pills (37-5)
(low number of respondents to this question)
-These questions ask about major side effects of some medication for anxiety, depression to mood.
33.33%When a person is already upset, it is hard to know if hearing voices or
seeing odd things is due to the upset or due to a pill
33.33% If I had hallucinations or heard voices I would be terrified
33.33% If I had hallucinations or heard voices I would tell my doctor
33.33% If I had hallucinations or heard voices I would be afraid to tell my doctor
66.67% If I had hallucinations or heard voices I would be relieved to learn
it may be due to the pill
33.33% not applicable ( 37-10)
(low number of respondents to this question)
10. pills – quitting or withdrawal
-If you had negative side effects of one pill, did the doctor prescribe a second pill also to be taken to counter the first?
7.14% Yes sometimes
3.57% Yes, this was a common suggestion
46.43% No
42.86% not applicable (15-59)
-If you wanted to stop a treatment did you learn that you had to wean off it very slowly?
13.79% Yes some treatments required a careful dose change
31.03% Yes most treatments required a careful dose change
20.69% No, the treatment did not require weaning to get off it
34.48% not applicable ( 15-31)
-These questions ask about your options if you feel a medicine is not working
0% I can easily reach the doctor to discuss dose or medicine adjustments
33.33% I have trouble reaching the doctor to discuss medicine or dose
adjustments
33.33% If a medicine is not working I am not certain if I need to stop using
it or just change the dose
0% I try to be ‘grown up’ and not overuse a pill
33.33% When a pill is not working I am scared to go off it too quickly because
doing that can also cause harm
66.67% not applicable (37-4)
(low number of respondents to this question)
11. pills – other considerations
-If you were given medication for stress, how do you feel about taking it?
29.41% I feel badly about needing it
41.18% I accept that I need it
29.41% I am grateful for it and think of it as something that helps me (21-11)
-re levels of brain chemicals differing in different brain regions. Does this suggest to you that treatment by medication may be difficult or unpredictable?
100.00% Yes
0% No (20A-3)
-Occasionally treatments for some patients use the same substance to reduce dystonia that in other patients or different doses seems to cause dystonia. Does this suggest to you that the appropriate mechanism of the brain has been found but the way to manipulate is what needs fine- tuning?
70.59% Yes
29.41% No (20A-4)
-Do you approve of the thorough drug testing process before a drug is used on humans even if it seems somewhat slow?
92.86% Yes
7.14% No (20B-46)
12. injections of botulinum toxin- first effect
-Are the botulinum toxin injections painful?
26.67% Yes quite painful always
33.33% Yes but only slightly or briefly or occasionally
23.33% No
16.67% not applicable (15-32)
-After botulinum toxin injection did you have bruising?
25.00% Yes often
25.00% Yes but only rarely, briefly or occasionally
32.14% No
17.86% not applicable (15-37)
-These questions ask about the first few days after getting botulinum toxin injections.
50.00% The injection was a little uncomfortable, burned or stung briefly
50.00% The injection site was sore for a while or slightly bruised
0% I had ear pain or ringing in my ears
0% I had eyelid droop
50.00% My head felt heavy, like a ‘bowling balL’ head
0% My voice was hoarse, or I found it hard to say words
25.00% My throat was sore
100.00% I had problems swallowing for a while
0% I got a headache
0% Food tastes odd or metallic
25.00% I got spasm
25.00% I was exhausted
25.00% I felt pretty good and had no negative side effects
25.00% I celebrate injections and treat myself to a nice dessert (36-3)
(low number of respondents to this question)
13. injections of botulinum toxin- delay to work
-These questions ask about effects of botulinum toxin injections after a few weeks
50.00% I felt amazing relief, like I could function again
0% The injections reduced my pain
25.00% The injections reduced my muscle tightness
25.00% The injections reduced my tremor and spasms
50.00% The injections reduced the strong pressure or pull on my muscles
25.00% The muscles not injected seemed to try to pick up the work of
the injected one
25.00% not applicable (36-4)
(low number of respondents to this question)
14. injections of botulinum toxin – positive effects
-After botulinum toxin injections did you feel more comfortable socially?
55.56% Yes
44.44% No (15-38)
-Do botulinum toxin injections help muscles near the dystonic muscle act more normally?
44.83% Yes they seemed to help those muscles too
24.14% No, they had no effect on those muscles
6.90% No, the other muscles seem to have problems now
24.14% not applicable (15-39)
15.. injections of botulinum toxin- negative effects
– After botulinum toxin injections have you had muscle weakness?
27.59% Yes for quite a while
10.34% Yes but only rarely or briefly or occasionally
44.83% No
17.24% not applicable (15-33)
-After botulinum toxin injections have you had swallowing problems?
25.93% Yes often
18.52% Yes but only rarely or briefly or occasionally
29.63% No
25.93% not applicable (15-34)
-Did you have eye irritation, blurred or double vision after botulinum toxin injection?
3.57% Yes often
17.86% Yes but only rarely, briefly or occasionally
50.00% No
28.57% not applicable (15-36)
-Did you have problems speaking after any treatment?
20.69% Sometimes and for quite a while
27.59% Sometimes but only briefly
37.93% No
13.79% not applicable (15-26)
-Did you have any bladder or bowel problems after the botulinum toxin injection?
0% Yes, often
0% Yes but only rarely, briefly or occasionally
72.41% No
27.59% not applicable (15-35)
16. injections of botulinum toxin- effectiveness over time
-Over the years did botulinum toxin have less effect?
28.57% No it has always worked the same for me
32.14% Yes, over the years it has started to have less effect
14.29% I don’t know. I have not had many
25.00% not applicable (15-44)
-These questions ask about longer term effects of botulinum toxin injections over the years.
25.00% The injections continued to work well for me
0% Over the years I got track marks from the injections
0% My muscles seemed to get thicker where they were injected
25.00% My muscles seemed to shorten or get smaller where they were injected
0% The injections seem minor compared to other surgeries I have had
50.00% The injections worked less well over the years, and my body may
have developed some antibodies or resistance to them (36-5)
(low number of respondents to this question)
17. injections of botulinum toxin – considerations
-frequency of injections
50.00% I get injections about every 3 months
25.00% I get injections about every 6 months
25.00% During covid lockdown I was unable to get regular injections
25.00% Delay in getting my regular injection causes me great discomfort
0% I sometimes have skipped an injection because I could not afford it
50.00% I sometimes have skipped an injection because of negative side effects
75.00%I sometimes have skipped an injection to see how my body was
managing with out
25.00% not applicable (36-6)
(low number of respondents to this question)
-Do different types of botulinum toxin act differently for you?
10.34% Yes they have worked differently for me
10.34% No they worked the same
20.69% unsure
58.62% not applicable (15-43)
-Did the doctor try new locations for the botulinum toxin injections based on your previous experience with them?
60.71% Yes
14.29% No
25.00% not applicable( 15-41)
-Did the doctor try different types of botulinum toxin to inject?
17.24% Yes
58.62% Not as far as I know
6.90% unsure
17.24% not applicable (15-42)
18.. deep brain stimulation
-Has deep brain stimulation helped you?
3.45% It has helped me with pain
3.45% It has helped me with muscle rigidity
0% It has helped me with tremor and spasms
0% I found setting adjustments make a big difference
3.45% It has helped me with quality of life
3.45% It has helped me in some aspects of dystonia but not others
0% It has not helped me
96.55% not applicable (15-62)
19. splints and braces
-If you had a splint, how was your experience with it?
100.00% It was adjusted to make sure it was not too tight or too loose
0% My fingernails or toenails stopped growing on that side when it was on
0% When it was first removed there was muscle twitching
0% When it was first removed there was muscle weakness
0% The dystonia was less when the splint was removed so the splint helped
(14-55)
(low number of respondents to this question)
-What is your opinion of research about immobilizing a limb for a while?
62.50% It sounds useful to look into
37.50% It does not sound wise (20A-5)
20. other surgeries or treatments
-Did surgery help with the dystonia?
6.90% Yes it made a big difference to help me
3.45% Yes it helped me a little bit or for a while
6.90% No it did not really improve the dystonia
0% It helped some aspects of the dystonia but not others
3.45% It helped some aspects of the dystonia but I got a new problem
89.66% not applicable (15-61)
-An hour after physical therapy how are your muscles?
30.77% An hour later they feel better than before
19.23% An hour later the pain is back
50.00% The exercise does not change my muscle discomfort (13-14)
L. Analysis
From patient biographies and informal reports, the effects of treatments for dystonia vary widely, not just between patients but for individual patients. Dystonia seems very hard to treat effectively.
An anonymous survey has the advantage of giving patients an opportunity to be very honest about their experience with treatment, without fear of offending the doctor or changing access to treatment.
Existence of other treatment options may vary. Some clinics may differ in their tendency to prescribe pills, to give botulinum toxin or cortisone injections or to recommend deep brain stimulation or surgery. The treatment of dystonia seems not completely standardized and patients often report going to different doctors who specialize in certain treatments.
Dystonia, uniquely to many conditions, can actually be caused by some treatments for other conditions, notably mental health conditions such as post traumatic stress, anxiety, depression or paranoia. The links to the use of those medications and the onset of dystonia bears careful scrutiny. It is likely that incidence of dystonia would go down significantly if psychiatrists and family doctors were able to do more careful screening of patient medical history and risks before they prescribed some of those medications. Even before a cure is found for dystonia, prevention seems possible in those circumstances.
Success rates with treatments
Patients often present with a group of symptoms such as muscle tightnees, pain, spasms, pressure. Their first interest is usually to address those symptoms. These charts look at success dealing with those symptoms.
treatment of pain
a treatment reduced the pain
66.67% Pain killers reduce pain but not muscle tightness
54.84% Treatment reduced my pain a little or significantly
29.41% Medications dull the pain for me
20.69% Pain got less but there was still tightness
17.65% Medications eliminate the pain for me
13.33% Painkillers reduce pain and muscle tightness
10.34% Pain, spasms and tightness got less but there was still pressure
3.45% Deep brain stimulation has helped me with pain
b. treatment had no effect on pain
26.67% Pain killers do not affect my pain
23.33% Botulinum toxin injections are not painful
12.90% Treatment had no effect on pain
6.90% Pain did not get less
3.45% Tightness got less but there was still pain
c. treatment made pain worse or brought new pain
60.00% Botulinum toxin injections are slightly or quite painful
50.00% Botulinum toxin injections were sore or stung for a while
For those whose dystonia causes pain, the reduction of pain seems a key goal of treatment. Pain seems much easier to treat than muscle tightness or the pressure of dystonia.
treatment of muscle tightness
a treatment reduced muscle tightness
25.00% Treatment reduced my muscle tightness
25.00% Botulinum toxin injections reduced my muscle tightness
13.33% Pain killers reduce pain and muscle tightness
10.34% Spasms, pain and tightness got less but there was still pressure
3.45% Tightness got less but there was still pain
3.45% Deep brain stimulation has helped me with muscle rigidity
b. treatment has no effect on muscle tightness
66.67% Pain killers reduce pain but not muscle tightness
52.94% Pain medications do not help with the muscle tightness
24.14% Spasms got less but there was still tightness
20.69% Pain got less but there was still tightness
6.90% Muscle tightness did not get less
c. treatment made muscle tightness worse
0%
Muscle tightness seems an ongoing problem for patients. Not only do medications and injections not consistently resolve it but neither does exercise, though some patients report that exercise and stretching bring temporary relief. An oddity of dystonia seems that the muscle tightness is not just a physical problem where stretching helps but an actual message from the brain to stay tight, one that exercise alone does not fully reduce.
treatment of tremor and spasm
a treatment reduced tremor and spasm
70.96% Treatment reduced spasms or tremor a little or significantly
50.00% Treatment reduced my tremors and spasms
25.00% Botulinum toxin injections reduced my tremor and spasms
24.14% Spasms got less but there was still tightness
10.34% Spasms, pain and tightness got less but there was still pressure
6.90% My hands and less are less shaky
b. treatment had no effect on tremor and spasm
88.00% I have not had any chills after medication
37.93% My hands and legs have not become shakier
6.90% Spasms did not get less
0% Deep brain stimulation has helped me with tremor and spasms
c. treatment made tremor, spasm or shaking worse
50.00% Some pilla have given me the shakes, especially if quick dose change
33.33% I was unable to sit still and had to hang onto a table edge
33.33% I have had severe body shakes
25.00% I got spasms after botulinum toxin injections
20.68% My hands or legs have become shakier a little or significantly
12.00% I have had chills after some medications
There may be several times of tremor apparently. The survey on pain identified a range of experiences with it. In addition some medications can cause tremor, shakes, even to those who never had tremor, particularly if the dose adjustments are made too quickly. The reasons for shaking then are quite different but for the patient it may be less clear which ones are due to dystonia and which due to treatment. The ones due to treatment seem consistent with any drug use and withdrawal tremors and are likely alleviated when doses are correctly adjusted, weaning is gradual or the drug is ultimately discontinued. The dystonia tremor however does not seem to reduce the same way.
treatment of the strong message in the body to have dystonia, the pressure or discomfort
a treatment reduced the dystonic pressure
38.46% Treatment got rid of the body message to have dystonia
25.00% Botulinum toxin injections reduced the strong pressure or pull on my
muscles
b. treatment had no effect on the dystonic pressure
61.54% I still had the dystonic body message
29.41% Pain medications do not end the dystonic pressure
10.34% Pain, spasms and tightness got less but there was still pressure
6.90% Pressure did not get less
c. treatment made the dystonic pressure worse
25.00% With botulinum toxin injections the muscles not injected
seemed to try to pick up the work of the injected one
Patients have trouble describing the phenomenon of a pressure or pull or gut feeling their body has to move to a certain position. Some liken it to a G force pushing them. Some compare it to the feeling of restless leg syndrome where a person just has to move, even though the movement does not fully resolve the urge. This double bind of having to go to a position and still not being comfortable when in it, is common with dystonia. The urge to go to position seems difficult to treat. This suggests that it is a message of near survival level intensity, a basic body response.
quality of life
a treatment improved quality of life
62.50% Treatment improved my quality of life a little or a lot
55.56% After botulinum toxin injections I felt more comfortable socially
3.45% Deep brain stimulation has helped me with quality of life
b. treatment had no effect on quality of life
44.44% Botulinum toxin injections did not make me feel more comfortable
socially
12.50% Treatment did not make much difference to my quality of life
c. treatment made quality of life less good
6.25% Things got worse for me
No treatment works for everyone, Those for whom a treatment works are often keen proponents of it. When it works, it improves their quality of life. To find out why some treatments work and others do not likely will require a very specific correlating of type of dystonia, medical history, genetics, allergies, past infections of this patient as well as specific medications and doses. The medical profession may struggle with what treatment is can provide but the factor of what the patient presents with may be vital and seems less studied. Patients sometimes report a desire for more study of their past before treatments are decided.
posture
a treatment improved posture
40.63% Treatment improved my posture a little or significantly
b. treatment had no effect on posture
28.13% Treatment did not improve my posture
c. treatment made posture worse
0%
Posture helps with practical function like walking and eating but also with social comfort to look more normal Those with dystonia of the eyes or vocal cords do not have the posture concern and those with hand or finger dystonia also may not. Those with leg, trunk or neck dystonia may have posture challenges however.
mood
a treatment improved the mood
27.58% After treatment I feel more cheerful
b. treatment had no effect on mood
55.17% There is no real effect on my mood
42.86% On the pills there is no effect on my patience
c. treatment caused moods to get worse
33.33% The pills make me feel jacked up and agitated
10.71% On the pills I am more restless and impatient
Mood is a complicated area to study because dystonia itself can lead to sadness. Any treatment that offers hope may enhance mood for a while. A treatment that reduces dystonic symptoms enhances mood. However medications for mental health, to reduce anxiety or depression sometimes calm the person but may create new mood problems, including, in some cases, more anxiety. This unfortunate consequence may be reduced by correct dose adjustment, getting off a medication or change of medication. Patients with dystonia have often experimented with a lot of ways to cope and experienced the hope and frustration of those experiments also. The surveys on mood are studied in a later section.
side effects and new problems
a. the results of treatment were great and there were benefits not anticipated
44.83% Botulinum toxin injections seemed to help the muscles
near the dystonia muscle to also act more normally
b. there were no side effects of treatment
24.24% Botulinum toxin injections did not affect nearby muscles to
act more normally
20.69% There were no negative side effects
c. there were minor side effects and a new problem
33.33% There were some negative side effects of pills
25.00% Treatment caused me minor side effects I could endure
6.90% Botulinum toxin injections led to other muscles having problems too
d. there were terrible side effects
50.00% Treatment cause me terrible side effects
42.86% I withdraw from treatment
Unlike allergic reaction or diabetic low sugar which are often treatable quickly and efficiently, dystonia seems slow to respond to treatment and responds less predictably.
energy level
a. energy level got better with treatment
3.45% Medication gives me more energy
b. energy level was not affected by treatment
34.48% Medication has no effect on my energy
c. energy level got lower with treatment
58.62% Medication or treatment made me drowsy or very low energy
50.00% Some pills made me feel numb like a zombie
37.93% Medication makes me tired
35.29% Pain medications make me sleepy and less alert
33.33% The pills make me sleepier
25.00% I was exhausted after botulinum toxin injections
It seems very common to have fatigue after treatment. This may also affect reaction time, energy level, sleep and mood.
memory
a. memory got better with treatment
33.33% I am able to think more clearly because the pain is less
b. memory was not affected by treatment
27.59% There is no effect on remembering dates or errands
c. memory was worse with treatment
66.67% I have more problems multitasking, remembering several things at once
66.67% I am more forgetful but not sure if this is due to pills or worry
33.33% If I drop things I less often can catch them
33.3% I am a bit more forgetful, if I left light on or where I parked
27.64% On the pills it is a little harder or very difficult to remember dates or
errands
Problems with memory can be significant for some patients. Though the problem may be worse due to worry about it or lack of sleep, there seems to be a negative effect of some pills on memory itself. The results can be minor or they can debilitating if people get lost away from home or forget to do vital tasks.Memory loss can have a huge impact on self-confidence and mood.
balance and dizziness
a. balance got better and dizziness less with treatment
0%
b. balance was not affected by treatment
24.14% The pills do not cause dizziness
c. balance and dizziness were worse with treatment
100.00% Some pills have made me dizzy
24.14% The pills cause dizziness a little or often
11.76% Pain medications make me dizzy
Dystonia can present with delays of responding to a desire to move and with motions that combine the dystonia motion and the body’s attempt to correct for it. The result may be wobbly and somewhat jerky motion. When medication has a side effect of dizziness, that can exacerbate what is already a problem trying to achieve smooth motion manipulating objects or walking. Patients often speak anecdotally of trade offs, trying to get rid of pain so taking strong painkillers but then finding the side effect of dizziness is so intense it is hard to walk straight.
The public is often familiar with dizziness due to fatigue, dehydration or standing up too quickly. People with dystonia likely also experience dizziness in those situations which may complicate understanding cause. There are several types of dizziness, one with a room seeming to spin and one with a feeling imbalance and heaviness so it is nearly impossible to carry the weight of the head. These differences in experience of dizziness could be studied to see if there are unique factors with dystonia.
sleep
a. sleep got better with treatment
25.00% I slept a little or a lot better
0% The pills helped me get a good sleep
0% The pills helped me wake up refreshed
b. sleep was not affected by treatment
75.86% My dreams are the same and not more vivid on the pills
50.00% There was no effect on my sleep
c. sleep was reduced or more of a problem with treatment
33.33% I woke up groggy and foggy
33.33% I woke up dissatisfied and angry
33.33% I seemed to miss out on a comfortable stage of half sleep
33.33% I had strange dreams when taking the pills
6.90% I have more vivid dreams
3.57% My sleep was less comfortable
Any treatment that reduces pain likely will help a person sleep if the pain was disrupting sleep. However patients report that treatments for anxiety that are meant to enhance sleep often add a second dimension to the problem. Experience with sleep medication can increases the duration of the sleep period so a person can ‘get more sleep’. However the experience is usually not reported as satisfying or normal sleep. The sleep brought on by sleep medication seems to not go through the normal sleep cycles but takes the person to deep sleep that does not permit pleasant experiences of gentle getting to or waking from sleep. Patients report that they wake up angry that the day is now starting and they do not really feel refreshed. Other medication seems to foster vivid dreams that some patients report asupsetting. The medications for mental health that affect thought patterns and sleep cycles seem very powerful and patients report mixed response to them.
mouth – talking , dryness, and swallowing
a. mouth condition, talking and swallowing were better with treatment
no responses
b. mouth condition , talking and swallowing were not affected by treatment
55.17% Treatment did not make my throat dry
44.83% Medication had no effect on my ability to talk
37.93% After treatment I do not have problems speaking
29.63% After botulinum toxin injections I have not had swallowing problems
c. mouth condition, talking of swallowing got worse with treatment
100.00% Some pills have caused me dry mouth, ‘cotton ball’ mouth
100.00% I had problems swallowing for a while after botulinum toxin
injections
48.28% After treatment I have problems speaking briefly or for quite a while
44.83% Some treatment has made my throat a bit dry or very parched
44.45% After botulinum toxin injections I had swallowing problems briefly/often
25.00% My throat was sore after botulinum toxin injections
13.79% Medication slowed my ability to talk a little or a lot
Many medications seem to result in less production of saliva and drier mouth. This can be a minor problem fixable by taking frequent sips of water, or a more uncomfortable situation where the mouth is so parched that the tongue sticks to the roof of the mouth and the lips cake with dryness. Some patients on several medications at once report a compound effect of mouth dryness.
Dystonia that affects the vocal cords is not the only type that affects speech. Patients with cervical, face or jaw dystonia report that muscles are slower to respond and harder to move around when they talk also, Effect of treatment that makes a mouth dry can further affect their comfort level speaking.
When dystonia results in excess production of saliva, or less ability to swallow easily and get rid of it, patients may find they have more problems with sputum or drooling. If a treatment dries the mouth one might think that may help them though it may not. The production of saliva seems vital to health and a treatment that alters it is experienced by some patients as great discomfort.
eye dryness, vision, distortions
a. eye condition and vision happened to get better with treatment
0%
b. eye condition and vision were not affected by treatment
50.00% After botulinum toxin injections I do not have eye irritation,
blurred or double vision
25.00% On the pills I have had no vision or depth distortions
c. eye condition or vision were worse after treatment
100.00% Some pills have given me blurred vision
28.57% Medication made my eyes dry and irritated briefly or a lot
25.00% On the pills I have had odd vision and depth distortions briefly or often
21.43% After botulinum toxin injections I have eye irritation, blurred
or double vision briefly or often
11.63% I have visual disturbances when on some medication
4.65% I have distorted vision when on some medication
Dystonia that affects the eyelids rarely seems to affect eye function itself. The person is functionally blind in some cases, though their eyes technically can see well. Those with cervical dystonia or meige syndrome have sometimes reported other eye involvement however. Sometimes there is a delay of the eye focusing or moving as desired to take in a landscape. If a medication affects vision, this then can add to problems a person is already having due to dystonia
Some medications for mood can have side effects of blurred vision or double vision and a few can have a side effect of causing visual hallucinations. These are not minor side effects in terms of daily function.
feeling of heaviness
a. the body felt lighter and more comfortable with treatment
0%
b. the sense of body heaviness was not affected by treatment
0%
c. the body seemed heavier to move around with treatment
50.00% My head felt heavy like a bowling ball after botulinum toxin injections
Feeling heavy and buoyancy is also studied in the surveys on daily activity and experience of swimming. A sense of heaviness may be related to balance and fatigue.
change in muscle strength
a. muscle strength got better with treatment
0%
b. muscle strength was not affected by treatment
44.83% After botulinum toxin injections I did not have muscle weakness
c. muscles felt weaker after treatment
37.93% After botulinum toxin injections I had muscle weakness
briefly or for quite a while
With dystonia often a muscle is too tight, in effect too strong. Weakness does not seem to be the problem. However if a toxin is given to somewhat paralyze a muscle, loosening it, if there is too much toxin the effect may be too far the other way. Patients have expressed confusion about botulinum toxin that seems to oosen up tight muscles for function. However cosmetically it seems to tighten up cheeks and reduce wrinkles. One of the mysteries to solve about treatment for dystonia may be resolved not in studying dystonia but in learning more about botulinum toxin.
body weight
a. body weight was not affected by treatment
25.00% My weight on the pills is the same as usual
b. body weight increased with treatment
100.00% Some pills have caused me weight gain
21.43% The pills led to a little or significant weight gain
c. body weight decreased with treatment
7.14% On the pills my weight has gone down
There are several factors that may be at work as weight changes during treatment. If a treatment is successful people may be happier and eat better, and eat more. However many pills for depression and anxiety lead to weight gain. The surveys found very little effect of treatment to cause nausea, stomach ache, bladder or bowel problems, even though botulinum toxin is a poison that got known for its spread through eating tainted sausage. The fact these injections do not seem to cause digestion problems is intriguing.
The fact that some pills cause weight gain however can be problematic for patients in terms of self-esteem.
Those with dytonia that affects the mouth and jaw may already have problems eating or swallowing, and have weight loss due to dystonia. If a person adds to that problem a treatment that can slow down swallowing then weight loss is doubly likely.
reaction time and reflexes
a. reaction time got better with treatment
0%
b. reaction time not affected by treatment
32.14% Medication has not affected my reflexes
c. reaction time was slower and longer with treatment
21.42% Medication has slowed my reflexes a little or a lot
Dystonia seems to slow reaction time and response time. However patients report that the startle reflex is enhanced, fast and very dramatic.
If medication further changes reaction time, either by making the person sleepy so slower or by making them agitated and unable to sit still, for those with dystonia these changes may add to an already difficult situation.
digestive system, bladder and bowel consequences
a. digestive function seemed to get better with treatment
0%
b. digestive function was not affected by treatment
72.41% I do not have problems with bladder or bowel after
botulinum toxin injections
41.38% The pills do not cause nausea
0% Some pills have given me stomach ache, nausea or vomiting
0% Some pills have led to diarrhea or constipation
0% I have bladder or bowel problems after botulinum toxin injections
c. digestive function was worse with treatment
10.35% The pills cause nausea a little or often
Overall feelings about treatment, effects and side effects
satisfaction level
a. treatment was overall of benefit
50.00% I felt amazing relief after botulinum toxin injectinos, like
I could function again
47.68% Treatment was mostly helpful
25.00% Treatment helped me, gave me my life back
25.00% I felt pretty good after botulinum toxin injections and had
no negative side effects
25.00% I celebrate injections and treat myself to a nice dessert
17.24% All aspects of dystonia got better – pain, spasms, tremor, pressure
10.35% Surgery helped a little or for a while or a lot
b. treatment overall made no difference
43.46% Treatment was mostly ineffective
20.69% I had no negative side effects
6.90% Surgery did not really improve the dystnoia
6.90 No aspects of dystonia got better
3.45% Deep brain stimulation helped me with some aspects of dystonia but
not others
c. treatment overall made things worse
100.00% It seems like I am particularly sensitive to pills and get
side effects other people don’t get
34.48% I had a combination of negative and positive results
33.33% The pills have some negative side effects
28.90% Treatment was sometimes problematic for side effects
3.45% Surgery helped some aspects of the dystonia but I got a new problem
feeling helped or cured
a. patient felt healed due to treatment
30.77% After physical therapy I feel better than before even hour later
0% I felt completely cured
b. patient felt better but not cured
60.00% I felt a lot better but not cured
12.00% For a time I felt better but I had a new problem
c. patient felt cured but the dystonia returned
56.00% For a time I felt better but it came back
19.23% An hour after physical therapy the pain is back
decisions to withdraw from treatment
a. patient left treatment because they felt cured
6.90% I withdrew from treatment because I felt fine now
b. patient left treatment because they were frustrated
75.00% I have sometimes skipped an injection because of negative side effects
42.86% I have withdrawn from treatment out of frustration
c. patient left treatment to see what the body was doing lately without treatment
75.00% I have sometimes skipped an injection to see how my body
was managing without it
effect of other surgeries
a. surgeries helped
10.35% Surgery helped a little or made a big difference to help me
b. surgeries made no difference
6.90% Surgery did not really improve the dystonia
c. surgeries made things worse
3.45% Surgery helped some aspects but I got a new problem
The time factors
a. how long it took for effects of treatment to be felt
100% some treatments took longer than others to show an effect
59.38% Positive effects of treatment started within a week
58.06% Positive effects of treatment took 2-3 weeks to be evident
50.00% Treatments took a few weeks
50.00% The delay was stressful
33.33% Positive effects took several months to be evident
25.00% Treatments took a few days to show an effect
0% Treatments had an immediate effect
b. how long it felt for negative side effects to be experienced
41.38% negative side effects started within 2-3 weeks
37.93% Negative side effects started immediately
c. if positive effects changed over time
they did not change
28.57% Over the years botulinum toxin always worked the same for me
25.00% The injections continued to work well for me
21.88% Positive effects lasted 3 months and continued
they did change
50.00% The injections worked less well over the years
46.88% Positive effects lessened after 2-3 months
32.14% Over the years botulinum toxin started to have less effect
28.13% Positive effects did not last
25.00% my muscles seemed to shorten or get smaller where injected
d. if negative side effects changed over time
50.00% I was told some unpleasant side effects would go away over time
34.48% Negative side effects got less over time
25.00% Some negative side effects went away over time
17.24% Negative side effects got worse over time
10.34% Negative side effects stayed the same over time
Discontinuing a treatment
ease of disontinuing
66.67% My doctor has been very good to help me gently wean off medication
33.33% My pharmacist told me how to wean off medicine
20.69% The treatment did not require weaning to get off of it
0% I can easily reach the doctor to discuss dose or medicine adjustments
difficulty of discontinuing
44.81% Some or most treatments required a careful dose change
33.33% I have trouble reaching the doctor to discuss medicine
or dose adjustments
33.33% My doctor did not tell me how to wean of medicine
33.33% If a medicine is not working I am not certain if I need to stop
using it or just change the dose
33.33% When a pill is not working I am scared to go off it to quickly
because dong that can cause harm.
10.71% It was sometimes or commonly suggested that I take a second pill
also to counter the first
Sources of confusion to assess effects of treatment
Patients reported that it was sometimes difficult to tell if any new symptoms were due to other factors.
64.53% said the difference between dystonia and allergy symptoms is clear
64.52% said the difference between aging and dystonia symptoms is clear
59.38% said it was sometimes or often hard to tell if the symptoms were dystonia or
fatigue
53.13% said it is sometimes or often difficult to tell the difference between other
stressors and dystonia symptoms
46.88% said the difference between dystonia and stress symptoms is clear
43.76% said it was sometimes or often difficult to tell if symptoms are due to dystonia or treatment
40.63% said the difference between dystonia and fatigue symptoms is clear
40.63% said it was not difficult to tell the difference between dystonia and treatment effect
35.49% said it was sometimes or often difficult to tell what is due to dystonia and what
is due to aging
35.48% said it was not hard to tell if vision problems are due to dystonia
25.81% said it was hard to tell if vision problems are due to dystonia
29.04% said it was sometimes or often difficult to tell the difference between dystonia
and allergy symptoms
The most likely sources of confusion seemed between dystonia and fatigue, and between dystonia and other stressors. The rates of confusion about if a symptom is due to dystonia or treatment for dystonia is also high.
Psychological acceptance of treatment
When patients are not happy to be given a treatment, the reasons may vary. They may be unhappy with the effects or side effects. They may be unhappy that they need treatment. though most who seek medical advice for dystonia probably do want treatment for the dystonia. Treatment for mental health however seems more contentious. The surveys should have clarified which questions were about treatment for mental health.
For anxiety or depression, some patients express guilt or resistance to the idea that they need help while others admit they need it and are grateful for it.. For some there is a threat to ego to be told they need help and for some there is stigma if others know they are taking medication, with possible career impact.
It is possible that a erson resists some treatment because they in fact do not need it. When patients are reluctant to take a prescribed medication, particularly for mental health, viewing this as resistance to what is good for them, may be only one point of view. In some ways there may be a parallel to investment advisers who classify investors not as if any stock is risky but as if the investor is or is not ‘tolerant ‘ of risks – as if the flaw were the personality of the investor. Patients who resist being given some medication may have diverse reasons for doing so, and it may be useful to consider that some of those reasons may be logical.
reluctance or guilt
33.33% I need the pills but I feel guilty for needing them
29.41% I feel badly about needing it
acceptance
41.18% I accept that I need it
29.41% I am grateful for it and think of it as something that helps me
0% I do not feel badly that I need the pills
Lived Experience With Dystonia 