Alternative Medicine
A. Context
Some patients talk about experiments with other treatments for their condition, particularly when standard medical care has not helped as much as they wished. The progression of treatments sought seems to go from home based care such as rest, heat or exercise, to over the counter creams and pills possibly to help sleep, to seeking a doctor’s advice, having tests and getting treatments. For a few it moves to exploring alternative medicines, in addition to or instead of western medicine.
Other styles of care for medical ailments have a long history. However the medical profession has established strict standards of testing to legitimize treatments it offers and ensure their safety and efficacy.. Those high ethics and rigid standards protect the public from physical harm and also from being led by well-intended but nonresearched offers to help.
The interest in supplements to western medicine may come from a person’s ethnic heritage or from a new current of holistic care, interest in nutrition, exercise and in particular interest in the mind, meditation, and thought direction.
The medical profession seems to have various reactions to these other strands
-Some are becoming options of the medical protocol. Many doctors advise patients to seek physiotherapy from registered physiotherapists because exercise often has proven helpful. Some medical facilities offer courses in cognitive behavior therapy and hospitals may offer spiritual care or permit healing touch services provided by people invited by the patient.
-Some currents seem harmless. Doctors are often aware of claims that certain vitamins or foods help with dystonia. Patients report that some doctors say such products probably won’t cause harm so they are neutral about their use.
-Some doctors are concerned at treatments that may deceive patients with therapies alleging benefit. Patients often express confusion about the claims of these other therapies and their proponents. What doctors have said in response to such claims is sometimes that there may be just a placebo effect at work, or that the condition is variable anyway. Some clinicians and patients have commented that those who propose such therapies should put them through the rigorous clinical tests of the scientific community. If they result in statistical benefit and no harm, then many are open to considering them but they do want that clinical proof.
What seems clear from patient reports is that some patients are using therapies occasionally and experimentally that they may not be telling doctors about. They may be afraid to tell for fear of being laughed at or criticized. They may be afraid of hurting the doctor’s feelings. They may be just trying this new idea and may not feel it matters much to their standard treatment. However it is possible that the other treatments may be having an effect that clouds the understanding of the standard treatment. In that regard surveys to let patients admit what else they are trying, without personal identification , stigma or risk of hurt feelings, may be useful. It there are patterns and especially if there are patterns that show either real benefit or real harm, these effects may be important to study.
It is illegal in most countries to claim that any product offers a cure for dystonia when no verified medical proof is available. Patients have expressed concern when wording on ads suggests cure is possible or that if there is no cure, that the patient’s attitude is to blame.
However patients in pain and with a difficult medical condition remain somewhat vulnerable to aggressive marketing.
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B. What seems useful to study further
1. Why people seek alternative therapy
Most patients who experience early signs of dystonia report that they at first thought it an anomaly that would resolve on its own. Most people dealing with a muscle cramp, a problem speaking, an odd tilt to the body, handled it first as if it is just a pulled muscle, a cramp, laryngitis, they slept wrong, or its some unusual virus that would just resolve itself.
Some try home cures that have worked for them in the past with muscle cramps, laryngitis, pulled muscles.
When these do not work they may try other treatments before seeing a doctor. There may be personal differences in when to consult a doctor including such factors as
-distance to the doctor’s office, availability, cost
-trust of doctors, past experience of their helpfulness
-personal image and concern that they may not be treated seriously
When a doctor is consulted, people with dystonia have reported a wide range of experiences. Some have trouble being believed, or finding a doctor knowledgeable about the condition. It is likely that at that point many quit seeking medical care, in frustration.
Some pursue the medical route with persistence. Recently since dystonia is more commonly known by some doctors, patients do not encounter the long delays to diagnosis that other generations had. However once there is a diagnosis, the treatment options suggested may create a few other dilemmas. One is the cost. One is accessibility of the doctor or clinic to give the treatment. It is possible that those two factors keep some patients from pursuing standard medical treatment.
When patients do try medical treatments, their reports vary.. Some patients have had very positive experience, swear by the treatment and continue to get it for years with no problem. Others however, though they find a treatment helpful, often report that some aspects of their dystonia remain. A given treatment may not address all symptoms- pain, pressure, position, tremor, tightness. A given treatment may not assist with sleep or mood, daily function or social function as much as a patient had hoped.
2. The benefits and risks of alternative therapy
Patients with dystonia often express privately that they feel stuck in their own medical distress and just want relief. Some also report they feel stuck in the stage of medical research. They may be big believers in clinical studies and medicine but want the process sped up.
The powerful effect of hope can be manipulated by marketers. Some patients report various aspects of this hope including that at least trying an alternative therapy is something active they can do, or that they really like the way staff at some nonmedical clinic treats them
3. Concerns
The risks of alternative therapies concern many patients. However some also report their appeal. If the cost of these treatments is lower than standard medical care that may be their appeal. If the cost of alternative treatments is very high, marketers often give the impression that this treatment is privilege. The patient is often given individualized
attention at private centres, where there is an atmosphere of competence
The staff may be wearing white, the person treating them may not be a medical doctor but may sport other credentials that sound academic.
4. The general nature of the survey
The questions in this survey are vague and probably to be useful should be much more specific. No particular products were named, no brand names were given, no practitioners, merchants or centres for such services were named. The usefulness of a given product or therapy would have to be studied very specifically and these surveys do not permit that. It was however decided to keep the questions general for several reasons. Itt is difficult to know all the options people are using and finding out general categories may be a useful first step. The intent was to not promote or insult any product or service
Many patients privately and on social seek specific advice from each other about such products and services. Some name flavors of cannabis that work best. Some name types of beer and wine that affect their voice the best. Some endorse clinics or herbs, foods or supplements quite specifically. It is unclear if such products help. However the scientific community if it had the time might find it useful to survey in some non threatening way, the effects of such treatments to see if there are patterns of benefit and if so, what particular aspect of the treatment is causing them.
C. Comments from clinical studies and researchers
I am aware of no research studies that examine if cannabis helps with dystonia
The Food and Drug Administration warns patients to watch out for secret formulas, amazing breakthroughs or guaranteed cures
Advertisements may suggest that certain alternative drugs can produce positive results for patients with dystonia.. Exercise caution – some of these drugs may have fraudulent claims and others may actually hurt you
Manipulation of the neck by a chiropractor who is not very familiar with dystonia can really aggravate the condition
Massage can sometimes provide temporary relief
D Comments from patient experience
acupuncture, dry needling
I tried acupuncture
I tried acupuncture but it did not work for me
Acupuncture helped but only for a few days
I had acupuncture and it was very helpful
The physio lady suggested acupuncture to me.She said it’s only a small prick, feels good, does not put any chemicals in the body and may relax the muscles.
chiropractor
I am going to see a chiropractor
I tried chiropractors
electric stimulation, biofeedback
I tried biofeedback
I used an electric stimulator with pads placed on my skin
exercise
I was told that the exercises activate a natural reflex mechanism of shaking or vibrating that releases muscular tension, calming down the nervous system
food, vitamins, supplements
Someone told me to take magnesium
I drink high calorie protein shakes
I take vinegar with the mother source in it
Someone said I should eat bananas
My floppiness left once I started taking vitamin D
I was told to eat pigeon
I am on a paleo diet
I’m doing the Mediterranean diet
Changing my eating habits really helps
I’m on a keto diet
I am trying the no wheat diet
They told me the herbs would remove metals from my body
hypnotism, hypnotherapy
I am trying hypnotherapy
I started to see hypnotists
I tried hypnotherapy with little benefit
I’ve journeyed through hypnotherapy
looking at certain paintings
There was reportedly even a video of an alleged spiritual healing of a patient who had had cervical dystonia for 18 years. She reported having looked at a painting of a wine bottle, praying and being cured. She later also had botulinum toxin injections however. Such stories become urban myths but there is also apparently a market for them.
magnetism therapy
I used a magnetizer
massage, trigger point therapy
I had massage and it was helpful
I think the weekly massages kept my symptoms from getting worse
I tried trigger point therapy
Massage did not help
Massage helped relax me done the right way but some ways it made it worse
Massage seemed to make my spasms worse
naturopathy .holistic medicine- treat the whole patient re stress and lifestyle
I am into holistic medicine
physiotherapy, physical therapy
I take physiotherapy
Physical therapy did not help
psychotherapy, positive thinking, cognitive behavior therapy, mind training,bioenergy therapy
I tried bio-energy therapy with little benefit
meditation, relaxation therapy, autogenic therapy
I did autogenic training
shaman and traditional counselling
I tried traditional shaman ways
sound therapy, brain spotting
I listen to music on headphones and it helps
I’ve tried brainspotting therapy
street drugs, cannabis, CBD oil
Cannabis really helped me. It did not kill the pain but it helped me cope
CBT therapy helped a bit but not with the pain
I rub CBD oil into my hands and over my neck and shoulders
I smoke concentrated cannabis not the flower. It does not smell like weed
I smoke marijuana daily to slow my muscles and get me in a good frame of mind
I smoked marijuana and it relieved spasms
I use CBD when I get my nails done
The CBD oil did not reduce my tremors
water, baths, hydrotherapy, sea weed baths, magnesium salt baths, hydrobed
hot tub
I have tried water therapy
I tried organic seaweed bath therapy
The hydro bed at the gym set off the dystonia symptoms
wine, alcohol
My voice is better after a few minutes when I drink wine
I was self-medicating with alcohol
I was self-medicating with alcohol and drinking too much
yoga, Tai chi
I found yoga very helpful
The yoga class benefitted me and improved my posture
E How to ask
Source of question ideas
-nearly all of these question ideas are from patient anecdotal reports
F. Question categories
general
creams, oils
electrical stimulation
food supplements
marijuana
smoking tobacco
yoga, meditation, mental treatment
other
G. Questions asked
surveys 16, 38
H. Results
alternative therapies
16 29 alternative 9 31 82 3
38 5 alternative 7 10 80 2
max no. respondents 29
total questions 41
likely type of dystonia all
percent of all respondents doing survey 29 of 508 or 5.7%
I. Results
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1. general – if try, tell doctor, research, cure
-With nonstandard treatmetns, did you check with your doctor to see if they were safe?
46.15% Yes
3.85% No, I was afraid to
11.54% No. I didn’t want to waste the doctor’s time by asking
3.85% No I didn’t want to hurt the doctor’s feelings by asking
46.15% No (16-9)
-Have you had positive results with alternative therapies?
62.96% Yes sometimes
29.63% No
7.41% not applicable (16-29)
-Would you approve of asking that nonstanard and alternative treatments be given clinical trials and published studies?
93.10% Yes
6.90% No (16-31)
-These questions ask about nonstandard and alternative treatments and how you feel about them.
40.00% I am concerned about treatments the medical community does not
endorse
20.00% I am willing to try anything that migth help
0% I like alternative medicine because I don’t need to pay a doctor to get it
0% I like alternative medicine because I can do it in private, eg. online
0% I like alternative medicine because it costs less than traditional medicine
40.00% I am concerned at the high cost of some treatments
80.00% I am suspicious of any claims to cure dystonia
60.00% I am concerned when someone claims they can assess my condition
over the phone
60.00% I am concerned when I tell someone a treatment is not working and
they say it is due to my attitude
40.00% I am concerned when I tell someone a treatment is not working
and they say to just keep trying and buying it ( 38-10)
(low number of respondents to this question)
-Have anyone ever offered you or you saw an ad for a medicine they claimed was a quick, painless, guaranteed amazing breakthrough, cure or secret formula for dystonia patients?
31.03% Yes
68.97% No (16-30)
2. cream, oil
-Have you tried any oil on your skin, such as peppermint oil?
45.45% Yes
54.55% No (13-28)
-creams and lotions
0% I have tried sprays to reduce body spasms
40.00% I have tried tropical creams or gels for pain
0% Sprays help me with dystonia
20.00% Sprays do not help me
40.00% Topical creams or gels help me
40.00% Topical creams or gels do not help me
20.00% not applicable (38-2)
(low number of respondents to this question)
3. biologic- shark cartilage, bee pollen, laetrile
-Have you tried biological therapies like laetrile, shark cartilage or bee pollen?
3.57% Yes
96.43% No (16-11)
4. electrical, bioelectromagnetic
-These questions ask about electrical stimulation or vibration near the dystonia muscles.
40.00% Transcutanial electrical nerve stimulation reduced my dystonia pain
20.00% Electrical stimulation pads reduced the tremors
0% Electrical stimulation was painful
40.00% Electrical stimulation was costly
60.00% not applicable (38-3)
(low number of respondents to this question)
-Have you tried bioelectromagnetic therapy such as pulsed or magnetic fields?
10.71% Yes
89.29% No (16-10)
5. energy, Qigong, Reikie, therapeutic touch
-Have you tried energy therapy such as Qi gong, Reikie or therapeutic touch?
27.59% Yes
72.41% No (16-27)
6. food, vitamins, minerals, hormones, herbs, oriental herbs, supplements
-Have you taken certain vitamins to see if they helped the dystonia?
51.72% Yes
48.28% No (16-2)
-Have you tried nutritional supplements to help with the dystonia?
55.17% Yes
44.83% No (16-3)
-Have you tried herbal therapies like geranium oil or almond oil to help with the dystonia?
10.34% Yes
89.66% No (16-4)
-Have you tried oriental herbal medicine to help with the dystonia?
13.79% Yes
86.21% No (16-5)
-vitamins, hormones and dystonia
0% Vitamin D helps with my dystonia
0% Omega 3 helps with dystonia
0% Vitamin E helps with dystonia
` 0% Silicon complex helps with dystonia
0% Raising testosterone levels helps with dystonia
100.00% none of the above (38-4)
(low number of respondents to this question)
-Have you been recommended vinegar with the ‘mother ‘ base in it to help with dystonia?
10.34% Yes
89.66% No (16-1)
-food
0% Tea with thyme reduces my dystonia
0% Hot peppers or cayenne reduce my dystonia
0% Food with capsaicin reduces my dystonia
0% A gluten-free diet reduces my dystonia
20.00% unsure
80.00% not applicable (38-1)
(low number of respondents to this question)
-Have you tried hydrotherapy using water at different temperatures?
14.29% Yes
85.71% No (16-28)
-Have you tried whirlpool therapy?
10.71% Yes
89,29% No (16-23)
-exercise
0% Salt water floating helps me
0% Water aerobics help me
20.00% Tai chi helps me breathe
0% Yoga helps me
20.00% Yoga gives me some sensory tricks for dystonia
80.00% none of the above (38-5)
(low number of respondents to this question)
7. cupping
-Have you tried cupping, a procedure to make a vacuum inside a glass cup, placed on body?
7.14% Yes
92.86% No (16-12)
8.. yoga, Tai Chi, exercise
-Have you tried yoga to help with the dystonia?
41.38% Yes
58.62% No (16-26)
-Have you tried Tai Chi to help with the dystonia?
7.14% Yes
92.86% No ( 16-21)
9. chiropractor
-Have you used chiropractic manipulation to help with the dystonia?
57.14% Yes
0% No but it has been suggested by a friend
7.14% No and it has been discouraged by a friend
35.71% No (16-22)
10. homeopathy, naturopathy
-Have you tried homeopathy?
25.00% Yes
75.00% No (16-18)
-Have you tried naturopathy?
10.71% Yes
89.29% No (16-20)
11 meditation, behavioral modification cognitive therapy, spiritual
-These questions ask about mind techniques to deal with dystonia.
0% Holistic medicine helps me
40.00% Meditation helps me
20.00% Spiritual connection and prayer help me
20.00% I feel that mind control will cure my dystonia
60.00% I feel that mind techniques help with stress but will
not cure the dystonia
20.00% not applicable (38-9)
(low number of respondents to this question)
12.. hypnosis, parapsychology
-Have you tried hypnosis to help with the dystonia?
24.14% Yes
75.86% No (16-19) (16-24 – same question and result)
-Have you tried parapsychology to help with the dystonia?
3.57% Yes
96.43% No (16-25)
13. reflexology
-Have you tried reflexology?
24.14% Yes
75.86% No (16-13)
14. alcohol, wine
-Have you changed your consumption of wine or alcohol because of dystonia?
22.22% Yes
77.78% No (16-7)
15, brain retraining, biofeedback
-Have you tried biofeedback to help with the dystonia?
7.14% Yes
92.86% No (16-16)
16. smoking, tobacco
-Have you changed your consumption of tobacco because of dystonia?
3.57% Yes
96.43% No (16-6)
-tobacco
80.00% I do not use tobacco products
0% I smoke more since I was diagnosed
0% I smoke less since I was diagnosed
20.00% I have not changed my smoking habits since diagnosis
20.00% Smoking tobacco helps me deal with stress
20.00% Smoking tobacco helps me with tremors
0% Smoking does not seem to help with dystonia
0% Smoking makes the dystonia worse (38-6)
(low number of respondents to this question)
17. massage, ayurveda, Guasha
-Have you tried ayurveda traditional Indian massage?
3.57% Yes
96.43% No (16-15)
-Have you tried Guasha- massage of porcelain spoon over body?
10.71% Yes
89.29% No (16-17)
18. gravity table
-Have you tried a gravity table or inversion therapy where the body is inverted?
17.86% Yes
82.14% No (16-14)
19, marijuana, CBD oil
-Have you been recommended medical cannabis?
50.00% Yes
50.00% No (16-8)
-These questions ask about legal smoking of marijuana.
20.00% I have not smoked marijuana since diagnosis
0% Marijuana reduced spasms and tremor
0% Marijuana reduced pain
20.00% Marijuana reduced tightness of muscles
0% Marijuana triggered the dystonia and made my muscles dance
0% Marijuana gave me dry mouth
0% Marijuana gave me red eyes
0% Marijuana increased problems of coordination
20.00% Marijuana led to slow thinking and memory problems
60.00% not applicable (38-8)
(low number of respondents to this question)
-legal marijuana as oil, extract, supplements or edibles
60.00% I have not tried these products
20.00% CBD oil has helped reduce my pain
40.00% CBD oil has changed my appetite
0% CBD oil has affected my skin
0% CBD oil has led to weight loss
0% CBD oil had led to dizziness
0% CBC oil has led to diarrhea
20.00% CBD oil had no effect on me
0% CBD oil did not help and my body seems to not tolerate it well (38-7)
(low number of respondents to this question)
J. Analysis
.
This survey only asked about trying alternate therapies and did not ask much about their effectiveness. Such questions would be helpful.
The point of view of a patient and the point of view of a doctor may be slightly different on such topics.
doctors
-Doctors are professionally obliged to advise patients to do what is clinically shown to be of most benefit
-Personally patients note that doctors sometimes break their own rules occasionally, such as not wearing sun tan lotion once in a while when in the sun, not quite following a pre test diet perfectly, not consulting a specialist when they personally show signs of a medical concern at first. So doctors may understand use of alternate therapies but not be comfortable in a clinical setting discussing them.
patients:
-Cooperative patients try to follow all directions as told, comply with all schedules, report side effects that are serious, go to all appointments
-As individuals however they may also think of their body also as their private domain to do with as they wish with whatever works to help it. In that way they make think of helping their body more as a homeowner might fix a dripping faucet. They may seek professional help or they may try their own homemade repairs and feel they have a right to do either or both and not have to report to the plumber what they do.
These diverse views of treatment may cross into an area of legal rights, privacy rights and personal freedom. However if an alternative treatment actually does help, it is useful for the medical community to know. If an alternative treatment is improving the patient situation but the doctor does not know the reason, this may cloud feedback about the medical treatment and may adversely affect future decisions about it,.
If an alternative treatment has no effect, that seems of no great harm medically so the medical community may not be concerned. If however an alternative treatment in any way makes the situation worse, that may be problematic for the patient and also for the appropriateness of medical response to help with the new situation.
response reluctance
An anonymous online survey may remove some reluctance to admit trying alternate treatments and eliminate any stigma. However even anonymous online questios when dealing with a highly sensitive and controversial area, may still be considered by respondents too private to respond about. Some treatments like alcohol or tobacco use or use of cannabis have varied levels of public approval and in the case of cannabis may not all be legal in LL areas. The low numbers of respondents for some questions may make the results of this survey less proportionally accurate. However the responses may be useful to show patterns for further study.
Those who fill out surveys may be a particularly unique segment of those with dystonia, attempting to be informed, anxious to find answers, willing to help advance science. They also by the nature of the surveys have access to a computer and are literate at a level able to do the surveys. They may have more financial means than others to try alternate medicine. Were the legitimate medical community interested in studying reasons for turning to alternate medicine, more specific questions would be useful.
informing doctor about use of alternative medicine
46.15% do not check with the doctor to see if the treatment is saef
46.1% do check
Reasons for not discussing alternate treatment include
11.54% did not want to waste the doctor’s time
3.85% were afraid to ask
3.85% did not want to hurt the doctor’s feelings
results of such therapies
62.96% said they had sometimes had positive results
29.63% said they did not have positive results
A large number of respondents would approve of nonstandard and alternative treatments being given clinical trials and published studies.
93.10% agreed and only 6.90% disagreed
80.00% are suspicious of any claims to cure dystonia
60.00% are concerned when someone claims they can assess their
condition over the phone
dystonia and mental health
The treatment of dystonia as a mental health issue has historically been problematic. It is unclear if today it is still treated as a cause of dystonia, a result of dystonia, a result of social stigma, a result of impact on daily life or finances, or if even that some treatment adds to mental health concerns.
A delay to get diagnosis could be reduced by more knowledge among the medical community about dystonia, and more training for medical students about it. The social stigma could be reduced by raising public awareness. The impact on daily could be reduced with devices to aid function. Treatment might be sped up using technology to measure dystonia.
The surveys indicate a high rate of prescriptions issued by doctors for mental health issues of dystonia patients. The stress of dystonia has often been the focus of many of the alternative medicine treatment claim also. Stress is also a common concern of the general population and many avenues to deal with it already exist – distraction, rest, meditation, music, exercise, yoga, hot pools, holidays. The mental health treatment industry is already huge.
There have historically always been outside the medical profession, both legitimate well intentioned offers to treat anxiety along with less credible treatments as some individuals may see this as a chance to make money.
Many treatments involve attitude. calm, focus, mind centring Patient experiences varied..
40.00% meditation helps me
27.59% had tried energy therapy, Qi gong, Reikie, therapeutic touch
24.14% had tried hypnosis
20.00%- 41.38% had tried yoga
7.14% had tried biofeedback
The surveys found that
80.00% are suspicious of any claims to cure dystonia
60.00% are concerned when they tell someone a treatment is not working
and they are told it is due to their attitude
40.00% are concerned when they report that treatment is not working
and they are told to just keep trying it and buying it
40.00% are concerned at the cost of some treatments
which treatments are tried
Respondents reported having tried these options:
57.14% chiropractic manipulation
55.17% nutritional supplements
51.72% vitamins
40.00% meditation helps me
27.59% energy therapy, Qi gong, Reikie, therapeutic touch
25.00% homeopathy
24.14% hypnosis
24.14% reflexology
22.22% alcohol or wine consumption change
20.00% – 40.00% – CBD oil
20.00% – 40.00% electrical stimulation
20.00%- 41.38% yoga
20.00% marijuana reduced tightness of muscles
20.00% Tai chi helps them breathe
17.86% gravity table or inversion therapy
14.29% hydrotherapy of water at different temperatures
13.79% oriental herbal medicine
10.71% biolectromagnetic therapy, pulsed or magnetic fields
10.71% Guasha massage
10.71% naturopathy
10.71% whirlpool therapy
10.34% herbal therapies, geranium oil, almond oil
10.34% vinegar with the ‘mother ‘ base in it
7.14% biofeedback
7.14% cupping
7.14% Tai Chi
3.57% ayurveda traditional Indian massage
3.57% change in consumption of tobacco
3.57% parapsychology
(rates of trying acupuncture were not tallied and this would also be a useful statistic)
Lived Experience With Dystonia 