Dystonia is a muscle contraction that cannot be consciously controlled and lasts for a long time. It can occur regardless of a person’s age. Therapeutic approaches to treating symptoms are based on the form of dystonia and an affected person’s symptoms.
What is dystonia?
Dystonia is a nerve disorder characterized by the occurrence of involuntary (not controlled by will) muscle contractions in the affected person. Which muscles are affected by dystonia differs depending on the individual case:
If a so-called generalized dystonia is present, the muscles of the whole body or a large part of the body may be affected by muscle contractions. A so-called focal dystonia, on the other hand, usually only affects individual muscle groups. Muscle contractions in the context of a dystonia can be expressed, for example, by certain movements of the affected person or by changes in posture. Dystonia can occur in people of any age; however, the onset of generalized dystonia is often in childhood, whereas focal dystonia often occurs in middle adulthood.
Causes
Often, the causes that led to dystonia remain unknown. However, the causes differ fundamentally in different forms of dystonia: while so-called primary dystonia usually has direct underlying causes, the less common secondary dystonia occurs as a symptom of some other underlying factor. Primary dystonia may be influenced by genetic factors; however, different family members may have different manifestations of the nerve disorder. Possible causes of secondary dystonia are varied: for example, this form of dystonia may be caused by underlying diseases such as forms of Parkinson’s disease or Huntington’s disease. Secondary dystonia can also occur as a side effect of so-called neuroleptics (drugs that have a depressant effect). Testimonials from sufferers often cite accidents involving the neck before the onset of secondary dystonia.
Symptoms, complaints, and signs
In most cases, dystonia involves involuntary twitching and movement of muscles. This usually affects different muscles, so that the affected person can also not control this region. Dystonia occurs regardless of age and can therefore also affect different groups of people. In addition to the twitching, the affected person often suffers from cramps in the muscles or severe tension. These are associated with pain, so that the quality of life of the affected person is significantly reduced. Often, those affected can no longer perform strenuous activities or sports due to the dystonia and are therefore restricted in their lives. Trembling of the muscles can also occur with dystonia and continue to make everyday life more difficult. In children, the condition can also lead to developmental disorders, as children are unable to participate in play or sports activities, for example, due to the condition. Psychological complaints or depression also frequently occur. Children may also become victims of bullying or teasing. The patient’s life expectancy is usually not negatively affected by dystonia. In some cases, wounds do not heal properly because of the twitching, and blood poisoning can occur in the worst cases.
Diagnosis and course
A medical discussion with the affected person and a physical examination are often sufficient to diagnose dystonia. Occasionally, the diagnosis of dystonia is confirmed by blood tests, magnetic resonance imaging (by MRI), or electromyograms (by EMG). The course of dystonia varies from individual to individual. In some cases, primary dystonia begins with relatively severe symptoms (and involved pain), but then completely resolves within a time frame of about 3 years. However, new onset of symptoms after resolution is possible in these cases. In other cases, symptoms of primary dystonia may worsen, for example, over a period of about 3 – 5 years, before the course of the disease then often stabilizes. The course of secondary dystonia in the presence of an underlying disease depends essentially on the course of this underlying disease.
Complications
Because dystonia causes muscle groups or even individual muscles to move uncontrollably, various complications can also occur in this context. Many affected individuals inflict injuries on their hands that can be very difficult to heal. Due to repetitive “knocking out” or strains, resulting wounds cannot heal properly. It is not uncommon for a simple wound to even develop into an inflammation, which should definitely be treated with appropriate medication. Otherwise, there is even a risk of blood poisoning if the inflammation forms an abscess. At the latest then a physician should be visited in any case. Further complications or accompanying symptoms are severe and long-lasting headaches, permanent trembling of individual limbs and hematomas. Dystonia also greatly weakens the human body, so that affected persons become tired and exhausted much more quickly. Anyone suffering from the first signs of dystonia should not put off a visit to the doctor. Only with an early diagnosis can the above-mentioned complications and accompanying symptoms be treated. Complete recovery is very rarely possible. However, appropriate medication can cause a significant improvement in well-being.
When should you go to the doctor?
Dystonia is a disease in which human movement is very severely restricted. In this case, individual muscle groups become very tense, so that the affected person can no longer regulate individual movements properly. If the person does not go to the doctor at this point, the complaints will increase immensely within a short time. In addition, there may be other accompanying symptoms, such as headache, fever, nausea or vomiting. If these symptoms occur, then a doctor should be consulted in any case. With appropriate treatment and the right medication, these accompanying symptoms can be combated very well and effectively. If the affected person decides for a treatment by a doctor, then the occurring complaints can be very well alleviated and fought. Anyone suffering from dystonia should definitely seek medical and drug treatment. Thereby a fast improvement can be achieved. Moreover, a complete cure is only possible if such treatment takes place at an early stage. Anyone who waits too long to visit the doctor may have to reckon with consequential damage that is irreparable.
Treatment and therapy
Effective therapy is initially based on the form of dystonia. If the causes of primary dystonia are unclear, therapy is usually aimed at treating symptoms that occur; a cure for dystonia is usually not currently possible in these cases. Depending on the therapeutic requirements, treatment of dystonia can take place on an outpatient basis or in specialized centers. For the effective treatment of a focal dystonia, a local injection treatment usually takes place. So-called botulinum toxin is injected into the muscle affected by the dystonia. The toxin inhibits the communication between nerves and muscle, so that the muscle contractions of the dystonia subside. Usually, injection treatments are continued at three-month intervals. In individual cases, injection therapy for dystonia can be supported by the administration of drugs that act in a similar direction to botulinum toxin. In some affected individuals, surgical procedures are performed to treat dystonia; possible options here include cutting connections between nerves and muscles or inserting a so-called brain pacemaker.
Outlook and prognosis
Dystonia does not self-heal and usually does not improve unless treatment is initiated. Dystonia is associated with severe muscle twitching that occurs involuntarily, thereby significantly reducing the quality of life of the affected person. Furthermore, severe tension also occurs, with sufferers often trembling. Dystonia makes everyday life more difficult, which can lead to delayed development in children. In many cases, the complaints increasingly intensify with age, so that complaints and complications can also occur in adulthood. Only in rare cases do the symptoms of dystonia disappear again on their own in childhood.The treatment can be carried out with the help of medication and limits the discomfort significantly, so that an ordinary development is possible for the patient. Furthermore, various therapies may also be necessary to support the muscles. As a rule, however, the course of the disease is positive if the disease is treated. Thereby, an early start of treatment has a very positive effect on the disease. The patient’s life expectancy is not affected by dystonia.
Prevention
Due to the lack of knowledge about the causes that can lead to the various forms of dystonia, appropriate prevention is usually almost impossible. The development of severe symptoms in dystonia can be prevented primarily by detecting the condition early and treating it appropriately.
Aftercare
In most cases, no special options or measures of aftercare are available to the person affected by dystonia. In this case, the affected person is primarily dependent on early detection and subsequent treatment of the disease to prevent further complications. The further course and the success of the treatment depend very much on the exact underlying disease, so that no general prediction can be made here. Under certain circumstances, the life expectancy of the affected person is also limited by the dystonia. In most cases, treatment is carried out with the help of medication, physiotherapy and physical therapy. The affected person can also perform many of the exercises from such a therapy at home and thus increase the mobility of the muscles again. When taking medication, the patient should always follow the doctor’s precise instructions. In case of questions or ambiguities, a doctor should always be contacted so that complications and other complaints do not arise. Furthermore, the support and care of one’s family and friends is also useful to facilitate the daily life of the affected person.
What you can do yourself
The therapy of dystonia focuses on medicinal and surgical procedures. What patients can do themselves to improve their health and quality of life depends on the type of disorder. Patients suffering from a severe form of blepharospasm have to blink at such extremely short intervals that many everyday activities such as screen work, watching television or reading a book are no longer possible. In this case, it often makes sense to switch to offers and technologies that have been developed for blind people, even if the patient has not lost his or her sight at all. Speech recognition can make it easier to work on a computer screen. Wearing dark glasses while watching television makes it easier to concentrate on the sound and thus at least still be able to follow news or political broadcasts. Many books are also available as audio books. In the case of persistent malpositions, physiotherapeutic and orthopedic measures can prevent damage to the joints and the associated restriction of movement. If cervical dystonia results in what is known as torticollis, wearing a neck brace can be helpful.
