Functional neurological disorder by NORD

Functional Neurological Disorder

NORD gratefully acknowledges Jon Stone MB, ChB, PhD, Consultant Neurologist, Co-director Functional Disorders Research Group, University of Edinburgh, UK; Tim Nicholson, Honorary Consultant Neuropsychiatrist, South London & Maudsley NHS Foundation Trust and Kings College Hospital NHS Foundation Trust, London, Clinical Senior Lecturer in the Section of Cognitive Neuropsychiatry, Institute of Psychiatry Psychology & Neuroscience, King’s College London; and Bridget Mildon, President/CEO FND Hope, Inc., for the preparation of this report.

Synonyms of Functional Neurological Disorder

• functional neurological symptom disorder

• functional movement disorder

• conversion disorder

• psychogenic seizures / movement disorder

• dissociative seizures / motor disorder

• non-epileptic seizures

• FND

General Discussion Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures. FND is a condition at the interface between the specialties of neurology and psychiatry. Conventional tests such as MRI brain scans and EEGs are usually normal in patients with FND. This had led, historically, to the condition being relatively neglected by both clinicians and researchers. However, it is now established that FND is a common cause of disability and distress, which may overlap with other problems such as chronic pain and fatigue. Encouraging studies support the potential reversibility of FND with specifically tailored treatments. New scientific findings are influencing how patients are diagnosed and treated which is creating an overall change in attitude towards people with FND. Older ideas that FND is “all psychological” and that the diagnosis is made only when someone has normal tests have changed since the mid-2000s. The new understanding, including modern neuroscientific studies, has shown that FND is not a diagnosis of exclusion. It has specific clinical features of its own and is a disorder of the nervous system functioning in which many perspectives are necessary. These vary a lot from person to person. In some people, psychological factors are important, in others they are not.

Signs & Symptoms FND patients can experience a wide range and combination of symptoms that are physical, sensory and/or cognitive. The most common include: Motor dysfunction • Functional limb weakness/paralysis • Functional movement disorders; including tremor, spasms (dystonia), jerky movements (myoclonus) and problems walking (gait disorder) • Functional speech symptoms; including whispering speech (dysphonia), slurred or stuttering speech Sensory dysfunction • Functional sensory disturbance includes altered sensation; e.g. numbness, tingling or pain in the face, torso or limbs. This often occurs on one side of the body • Functional visual symptoms; including loss of vision or double vision Episodes of altered awareness • Dissociative (non-epileptic) seizures, blackouts and faints: these symptoms can overlap and can look like epileptic seizures or faints (syncope) Symptoms often fluctuate and may vary from day to day or be present all the time. Some patients with FND may experience substantial or even complete remission followed by sudden relapses of symptoms. Other physical and psychological symptoms are commonly experienced by patients with FND but may not be present. These include: chronic pains, fatigue, sleep problems, memory symptoms, bowel and bladder symptoms, anxiety and depression.

Causes The exact cause of FND is unknown, although ongoing research is starting to provide suggestions as to how and why it develops. Many different predisposing factors can make patients more susceptible to FND such as having another neurological condition, experiencing chronic pain, fatigue or stress. However, some people with FND have none of these risk factors. At the time FND begins, studies have shown that there may be triggering factors like a physical injury, infectious illness, panic attack or migraine which can give someone the first experience of the symptoms. These symptoms normally settle down on their own. However, in FND the symptoms become ‘stuck’ in a ‘pattern’ in the nervous system. That ‘pattern’ is reflected in altered brain functioning. The result is a genuine and disabling problem, which the patient cannot control. The aim of treatment is to ‘retrain the brain’, for example by unlearning abnormal and dysfunctional movement patterns that have developed and relearning normal movement. One way of thinking about FND is looking at it as a bit like a ‘software’ problem on a computer. The ‘hardware’ is not damaged but there is a problem with the ‘software’ and so the computer doesn’t work doesn’t work properly. Conventional structural MRI brain scans are usually normal in FND unless the person has another neurological condition. Functional’ brain scans (fMRI) are starting to provide early evidence for how the brain goes wrong in FND. fMRI scans show changes in patients with FND which look different from healthy patients without these symptoms as well as healthy people ‘pretending’ to have these symptoms. Functional imaging is still a research tool and is not developed enough to be used in the diagnosis of FND. Scans support what patients and researchers already know – these are genuine disorders in which there is a change in brain functioning, which is out with the control of the person with FND. Historically, FND has traditionally been viewed as an entirely psychological disorder in which repressed psychological stress or trauma gets ‘converted’ into a physical symptom. This is where the term ‘conversion disorder’ comes from. Psychological disorders and stressful life events, both recent and in childhood, may be risk factors for developing the condition in some patients, but they rarely provide a full explanation for the cause of the condition and are absent in many patients. Patients do not have to be depressed, anxious or the survivor of adverse childhood experience to develop FND. Modern theories propose that FND has many causes, which vary from patient to patient. One comparison is to think about heart disease. There are lots of causes of heart disease – smoking, genetic factors, diet and even stress-related / psychological factors such as depression. Smoking may be a factor in heart disease in many people, but it is not in everyone. The same analogy can be made for FND. In some psychological factors such as past trauma or stress at the time of symptom onset in FND are important in understanding how the brain has gone wrong. In others the presence of a problem like migraine or a physical injury may be the most important thing.

Affected Populations The exact prevalence of FND is unknown. However, research suggests FND is the second most common reason for a neurological outpatient visit after headache/migraine; accounting for one sixth of diagnoses. This means FND is as common as multiple sclerosis or Parkinson’s disease. FND can affect anyone, at any time, although it is uncommon in children under 10. FND is more likely to affect women than men for most symptoms, although when patients present over the age of 50 then it occurs equally in both groups.

Related Disorders It is common for FND to co-exist with other illnesses. FND can have similar symptoms to most other types of condition seen in neurological practice such as multiple sclerosis, stroke and epilepsy. Some patients have both a neurological disease diagnosis such as stroke and FND. A neurologist is normally required to assess which symptoms relate to FND and to monitor where required for any new symptoms. Anxiety and depression can sometimes cause physical symptoms which overlap with FND symptoms. For example, panic attacks can present with symptoms such as pins and needles in the fingers or mouth and depression often causes poor concentration or fatigue. Anxiety and depression are common in patients with FND but many patients do not have such problems. Chronic pain is also common in patients with FND including fibromyalgia, which is also related to disturbed nervous system functioning. Pain disorders are also usually associated with fatigue, sleep disturbance, and poor concentration. Migraine and chronic headaches are also common. Other functional disorders including irritable bowel syndrome, or overactive bladder syndrome are more common in patients with FND. It is important that new symptoms not automatically be considered functional and other causes are considered and investigated as appropriate.

Diagnosis FND is diagnosed on the basis of positive physical signs, and usually requires a neurologist or a doctor familiar with neurological diagnosis. Some examples of these signs are: • Hoover’s test is for of functional leg weakness – the patient may have difficulty pushing their “bad” leg down (hip extension), but when they are asked to lift up their “good” leg, movement in the “bad” leg returns transiently to normal. • The tremor entrainment test for functional tremor – this is when the shaking of an arm or leg becomes momentarily better when the person concentrates on copying a movement that the examiner makes. • Dissociative (non-epileptic) seizures can often be recognised by a trained health professional using a combination of typical features such as: an episode of violent limb thrashing in which the eyes remain closed, side-to-side head movements, or an event lasting longer than 5 minutes where the eyes are closed, hyperventilation during a shaking attack or tearfulness on recovery.

Standard Therapies Overview FND can be hard to understand and most people haven’t heard of it. Treatment should start with a clear and supportive explanation of the positive clinical features that have allowed the diagnosis to be made, even though scans and other laboratory tests may be normal. When it goes well, understanding the diagnosis enables the patient to see that they have a genuine and relatively common condition which has the potential for improvement over time. This creates a foundation for treatment to build upon. Written information, like that available at www.neurosymptoms.org or www.fndhope.org may help individuals comprehend this complex and difficult to understand disorder. Evidence is now emerging for the efficacy of certain treatments, especially physiotherapy for motor symptoms and a type of psychological therapy called cognitive behavioral therapy (CBT) for attacks or seizures. Specialized types of physiotherapy and CBT have been developed for FND. Other therapies such as speech therapy and occupational therapy may also have a role depending on the symptoms. Physical Therapy For patients with motor symptoms such as limb weakness, gait problems or movement disorder, physical therapy from a therapist who understands something of FND can be helpful. Physiotherapy approaches are active treatments that focus on retraining movement patterns that have gone wrong. There is some evidence from clinical trials that physiotherapy designed specifically for FND can be helpful for some patients. In recent years we have learned that physical therapy for FND is different from that used for stroke or MS in many ways. For example, patients with stroke benefit from being asked to focus on the affected body part, whereas in FND that tends to make things worse. Physical therapy for FND promotes ‘automatic movements’ and reduces the abnormal brain patterns that have been interfering with movement. Psychological Therapies CBT is generally the first line of treatment for patients with dissociative (non-epileptic) seizures or attacks as part of their FND and is supported by clinical trials. Therapy includes time to learn more about their attacks and recognizing brief warning symptoms and learning techniques to regain control. For some patients it is helpful to look more widely at thoughts, emotions, and experiences that could have played a role in the development of symptoms. For those patients without anxiety and depression, psychological therapy may still be useful in regaining confidence. FND itself is often experienced as a stressful condition to manage and live with. Other types of psychological therapies can also be used depending on the individual patient, e.g. psychodynamic interpersonal therapy (PIT) or more trauma-focused work for patients who have had such experiences. Occupational Therapy Occupational Therapy assists patients in finding adaptations and regaining confidence in their ability to carry out daily activities in the home or workplace. Occupational therapy can help build on other therapies to contribute to a better overall quality of life. Speech Therapy For patients with speech symptoms as part of FND, speech therapy is an important part of treatment. Like physical therapy, the approach is different from that used, for example, after a stroke and patients benefit from seeing therapists confident in this area. Other Therapies There is no research-based evidence that any specific medication is beneficial for FND, but medications may be useful for other symptoms commonly occurring with FND such as pain, migraine or anxiety. Other therapies are being investigated in research studies Not everyone with FND can benefit from treatment even if they do understand their condition and are well motivated.