Living with dystonia Coping with dystonia Dystonia and mental health Click here to download our leaflet on Dystonia and mental health. Both our physical and mental health are important for our wellbeing. Just as our physical health gets worse when we get a physical illness, so our mental health can get worse if we have a mental health condition. This can happen to anyone and is quite common - one in four people experience a mental health condition at some point in their lives. Mental health conditions are very real illnesses and treatment is frequently necessary. There are many different types of mental health condition. Some common types are: Depression which can include feelings of sadness, hopelessness and helplessness, crying, worry, low self-esteem, a lack of energy, sleeping difficulties and a bleak view of the future. Anxiety which can include symptoms such as persistent nervousness, tension or worry, a sense of dread, and difficulty concentrating and sleeping. Obsessive compulsive disorder (OCD) which is a disorder where unwanted thoughts, urges and repetitive activities become an obstacle to living life as you want to. Psychosis is a more serious mental health condition, when the person can experience hallucinations (hear or see things that are not there) and delusions (have beliefs that are false) and symptoms can become so severe that the person loses contact with reality. A related psychological issue is stress which is when we feel we have too much to do or too much on our minds, or other people are making unreasonable demands on us, or we are dealing with situations that we do not have control over which exceed our ability to cope with them. Everyone experiences stress from time to time and it is not a medical diagnosis, but severe stress may sometimes lead to or be a sign of depression or anxiety. There is a lot of stigma related to mental health conditions which can make people reluctant to admit to themselves or others that they have an illness. It is very important that this barrier is overcome to ensure the mental health condition receives the necessary treatment. The relationship between dystonia and mental health Mental health is a sensitive topic for many people with dystonia as many cases of dystonia are initially mistaken for a mental health (or psychological) condition. In the vast majority of cases, dystonia is a neurological illness and does not have a mental health cause. However, it is also increasingly understood, that although mental health conditions do not normally cause dystonia, there can be an important inter-relationship between dystonia and mental health in some cases. This relationship can be two-way: Many people with dystonia report that stress and anxiety can aggravate their symptoms of dystonia. The symptoms of dystonia may cause depression or anxiety as a result of pain, disruption of daily activities or social isolation. In addition, it is now thought that people affected by dystonia are more likely to experience mental health conditions such as depression, anxiety and OCD even before the physical symptoms of dystonia appear. It is not known why this is – but it appears that whatever causes dystonia may also affect mood and behaviour in some way. This is very much an individual experience – many people with dystonia never have mental health conditions. However, where such conditions do appear, the ability to cope with dystonia will be much improved if these are treated alongside the physical symptoms. In addition, people with dystonia often find it a relief to learn that mental health conditions can appear together with dystonia and are nothing to be ashamed about. An additional relation between dystonia and mental health conditions is that some drugs used to treat psychoses can cause tardive dystonia / dyskinesia. With the new generation of these drugs (called dopamine receptor blockers) this is much less likely than it used to be – but unfortunately a small risk remains. Managing mental health conditions The main treatments for mental health conditions are medication and talking therapies. Medication The medication most commonly used to treat mental health conditions are anti-depressants or anxiolytics which are effective for treating depression or anxiety in some people but, for others, talking therapies are just as effective especially when the mental health condition is not severe. To treat psychosis, a number of anti-psychotic medications are used. As these do have a risk of causing tardive dystonia, people with dystonia should discuss the risks with their doctor before taking these medications. Talking therapies Talking therapies provide a regular time and opportunity to talk about your troubles and explore difficult feelings with a trained professional. This can help deal with specific conditions, cope with a crisis, improve relationships, or develop better ways of living. The purpose of talking therapies is not, usually, to give advice, but to help you understand your feelings and behaviour better and, to help you change your behaviour or the way you think about things. There are a number of different types of talking treatments including cognitive behavioural therapy (CBT), counselling and psychotherapy. Other ways to manage mental health A wide range of other activities can also help improve mental health. These include physical exercise, complementary therapies, volunteering and other social involvement such as adult education. What works is specific to each individual – especially for people with dystonia where the severity and type of dystonia will affect which approaches are suitable. You should check with your consultant before taking on any new therapy or exercise regime. Sources of help If your mental health is making you feel desperate or if you simply need someone to talk to, the Samaritans are available 24 hours per day to provide confidential support:Samaritans: 116 123 If you need information about any aspect of mental health, you can contact Mind: Mind: 0300 123 3393 / www.mind.org.uk If you wish to talk about dystonia, you can call the Dystonia Society helpline. This is not an emergency line and we do not guarantee to answer calls immediately. We are also not experts in mental health. Dystonia Society Helpline: 020 7793 3650 Disclaimer The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor. The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.