Non-Motor Symptoms of Dystonia Webinar Questions

Q: Are there some related factors shared with AUTISM, as far as sensitivity to? Is there some form of autism or giftedness that comes with dystonia?

A: I am not aware of specific cognitive gains that have been clearly demonstrated in people with dystonia. However, I have directly observed (as I also presented in the webinar) an increased ability to perceive and interpret other people’s emotions, especially in those patients with cervical dystonia who have a greater burden of social and generalized anxiety. I think this makes people with dystonia with social difficulties particularly suitable to undergo cognitive behavioural therapy to improve their coping strategies in an effective manner. In addition, I don’t think that people with dystonia have -fortunately- the same degree of sensory hypersensitivity that troubles some patients with autism.


Q: Does vaccine-induced dystonia exist? 

A: I have never encountered rapid onset of dystonia after vaccination. During the pandemic, we have nevertheless experienced an important rise in the number of people with functional movement disorders, which includes functional dystonic posturing or movements. Functional dystonia mimics dystonia but is a different condition altogether that should be treated with education, reassurance, and in some cases very dedicated physical therapy approaches (but not with botulinum toxin or other anti-dystonia medications). Functional movement disorders are a complex reaction triggered or fueled by -in predisposed individuals- a rise in social or generalized anxiety with or without depressed mood. They are potentially reversible and typically those related to the pandemic period are having a good outcome, often without any active treatment.


Q: Is it possible that a person's suffering with severe anxiety & depression could be caused by dystonia but that person not have any movement disorder symptoms? Our family has members with dystonia/movement disorders and other members with anxiety & depression without movement disorders. Could dystonia be at the root of both aforementioned sets of symptoms between siblings?

A: Genetic and epidemiological data now show that depressive disorders and dystonia may run in the same families, possibly due to some common genetic factors that could predispose to both. In these families, the onset of depression is followed by the onset of dystonia in some members, whereas others have only one of the two without developing the other disorder. I don’t think we can say that depression without dystonia is “caused” by dystonia, but we can rationally hypothesize that the two have some shared mechanisms. Discovering these shared mechanisms might lead to treatments targeting both mood problems and the movement disorder. More research is needed on this, though.


Q: My daughter and grandson both have Dystonia. They have both been helped with DBS surgery. I do not have any significant symptoms and apparently received the gene through my father. My son who is now in his fifties has developed serious depression and anxiety which for about five years has been untreatable and seems to be worsening. Could he also have Dystonia and what treatment options could be available to him?

A: Please see answer to the previous question. If there is no dystonia evident, then a treatment specific for the movement disorder is not indicated. There is, however, a greater probability- compared to the general population- that he might develop dystonia. I would recommend referral to a neurologist if movement abnormalities are first noticed. At present, we cannot prevent the development of dystonia in someone who is genetically predisposed to it.


Q: Are high anxiety people more likely to develop a form of Dystonia or does Dystonia tend to produce higher levels of anxiety?

A: Both can be going on in the same person. As mentioned in my previous answers, there is a common genetic background predisposing to both depression/anxiety and dystonia, but there is no doubt that the emotional stress of having to cope and live with dystonia could aggravate -if not managed properly- the patient’s anxiety and depression. I don’t think we should think that A causes B rather than B causing A: I think that A and B may have shared mechanisms and somehow fuel each other. That’s why it’s important to manage actively depression/anxiety if these impact on the patient’s quality of life.


Q: Is there any clear evidence that reducing stress improves one’s symptoms with dystonia?

A: Unfortunately, there isn’t clear evidence of this. Reducing stressors and related emotional problems improves quality of life, though, without any doubt.


Q: What percentage of people with Dystonia take pain medication?

A: No good data exist on this, but our experience is that the percentage is around 25/30%.


Q: Can dystonia be linked to emotional trauma?

A: Dystonia is not caused by emotional trauma (functional neurological symptoms -including “functional dystonia” may, but these are very different conditions from dystonia). Socially distressing situations may occur to people with dystonia, in many circumstances also stemming from the difficulties of coping with the movement disorder in a social context.


Q: How to cope mentally with the effects of dystonia. Isolation, anxiety, depression due to dystonia?

A: Solutions are inevitably personalized and should be sought -when severe enough- with health professionals. Neurologists and family physicians should refer or advise self-referral to mental health specialists (therapists, counsellors, or even psychiatrists). Unfortunately, patients with dystonia are under-referred and under-utilize mental health resources, and this should change in the future.


Q: How can a health care provider best support individuals affected by dystonia?

A: By improving his/her care process to incorporate efficient screening and management of non-motor symptoms, in addition to the treatment for motor symptoms. I recommend discussing these issues with the neurologist (or with DMRF if the neurologist is unwilling to engage with these important issues).


Q: How can we reach out to the frontline healthcare workers - PT, GP's, Psychologists...?

A: The family physician and the neurologist are the two most important figures in the care process for people with dystonia. Sometimes movement disorders nurses can also help and provide useful information. I recommend discussing openly non-motor symptoms with these healthcare professionals, and if necessary, demand referral to mental health services.

Thanks to Dr. Davide Martino for sharing these responses on January 12, 2022. 

Please note: This page aims to provide dystonia patients and caregivers with information about dystonia, as well as tips and tools for how to live your best life with dystonia. DMRF Canada is not recommending any specific course of treatment for dystonia. Any new or experimental treatment mentioned here may still be relatively new or exploratory at this time. Please speak with your Movement Disorder Specialist or General Practitioner about any course of treatment to ensure it is right for you.

Last update: Jan 2022