SUDEP denotes sudden and unexplained death in epilepsy patients. The sudden death cannot be explained by existing known disorders and underlying diseases or by the consequences of an epileptic seizure. In general, however, there is a slightly increased risk for epilepsy patients of dying unexpectedly.
What is SUDEP?
SUDEP is an abbreviation from English and means sudden unexpected death in epilepsy. The cause of death has not been clarified in individual cases, but is directly related to the sudden electrical discharges of nerve cells in certain regions of the brain. Vital functions such as breathing or heartbeat are temporarily disabled. See wholevehicles for What are the Meanings of KS.
However, a SUDEP occurs very rarely. It was found that only 50 to 100 out of 100,000 epilepsy patients die from SUDEP each year. The type of underlying epilepsy is important for the risk of succumbing to SUDEP. While the risk of epilepsy that is easily treatable is two percent, it can increase to around 20 percent in the case of therapy-resistant epilepsy.
On average, 7 to 17 percent of sudden epilepsy deaths are attributed to a SUDEP. The numbers fluctuate so much because the SUDEP is not listed by the Federal Statistical Office in Germany. When asked, it is explained that a disease with the name SUDEP is unknown. For example, all epilepsy-related deaths are listed as the cause of death, regardless of whether the sudden death was a direct result of the illness or an accident associated with an epileptic seizure.
The causes of SUDEP are not fully understood. However, it is suspected that the deaths occur in the context of an epileptic seizure, in which the heart rate changes drastically or breathing regulation is significantly disturbed. The heart rate can rise sharply (tachycardia) or fall sharply (bradycardia).
In some cases, pulmonary edema may develop during an attack, which can also be fatal. It has been observed that most sudden deaths from an epileptic seizure occur during sleep. The greatest risk of suffering from SUDEP is a generalized tonic-clonic seizure (grand mal). There are also various risk factors for SUDEP.
These include focal epilepsies (frequent occurrence of partial seizures with aura formation), early onset of epilepsy, additional neurological deficits, errors in therapy (changing medications or taking several antiepileptic drugs at the same time), lack of patient cooperation and, of course, frequent tonic-clonic seizures. A generalized tonic-clonic seizure occurs either shortly before or at the same time in all deaths.
Symptoms, Ailments & Signs
As already mentioned, the SUDEP is directly related to a generalized tonic-clonic epilepsy seizure (grand mal). A grand mal begins with strong tonic contractions of the muscles, resulting in short-term cardiac arrest and cyanosis from lack of oxygen. The pupils can dilate.
The patient loses consciousness and is no longer responsive. When the extremities are extended, the eyes are open and the mouth closed by a lockjaw. The tonic phase is followed by the so-called clonic phase with rhythmic muscle twitching. This can result in tongue biting, urination, and sometimes defecation.
After three to five minutes, the seizure is over. A state of exhaustion usually follows. However, in a few cases, SUDEP, i.e. death from cardiac or respiratory arrest, is possible during the attack.
Diagnosis & course of disease
During the diagnosis, the cause of the existing epilepsy is determined in order to be able to initiate an effective therapy. There are symptomatic and idiopathic forms of epilepsy. Symptomatic epilepsies are only a symptom of an underlying organic brain disease. These can be cerebral malformations, brain tumors or infections in the brain. In idiopathic epilepsy, no cause can be identified. Epilepsy is the only symptom here.
In any case, SUDEP is fatal for the person concerned. The epilepsy attack is accordingly accompanied by serious complications that lead to cardiac arrest and ultimately to the death of the person concerned. First, strong tonic contractions of the muscles occur, accompanied by a lack of oxygen and a blue discoloration of the skin.
As a result, the heart stops and the patient loses consciousness. Possible subsequent complications are rhythmic muscle twitching, tongue biting and bladder emptying up to defecation. Since the person concerned dies from these complications, there is no further possibility for therapy. The relatives usually suffer a shock and need psychological care.
In some cases, the parents, siblings and friends feel guilty because they could not help the deceased. Depression and anxiety disorders can also occur as a result of SUDEP. If sudden unexpected death in epilepsy is treated preventively, complications can primarily arise due to the medication prescribed.
The typically prescribed antiepileptic drugs are always accompanied by complaints such as gastrointestinal problems or cardiac arrhythmia. Occasionally, allergic reactions and serious events can also occur.
When should you go to the doctor?
Symptoms such as circulatory problems, shortness of breath and cyanosis are typical initial symptoms of SUDEP. Family members of people with epilepsy should call emergency services immediately if they experience these symptoms. The patient loses consciousness relatively quickly and eventually dies from cardiac or respiratory arrest. If it is a SUDEP, treatment is usually no longer possible. Therefore, the epileptic seizures must be treated preventively. This is achieved through close medical monitoring and preventive measures such as avoiding triggers. Despite the poor prognosis, a medical examination is required for SUDEP.
The unconscious patient must be examined by the emergency doctor and, if necessary, taken to a hospital. If the course is positive, a longer hospital stay is necessary. The SUDEP is treated by the emergency doctor or a doctor specializing in epileptic disorders. Initially, however, first aid measures by relatives, friends or other first aiders are necessary in order to improve the condition of the person concerned and to increase the chances of survival after a severe epileptic seizure.
Treatment & Therapy
The goal of treatment for epilepsy is to prevent seizures. At the same time, this also prevents a SUDEP. However, epilepsy treatment consists of acute therapy and long-term epilepsy therapy. Acute measures must be taken for sudden generalized seizures to avoid injury from falls and oxygen deprivation from ineffective breathing.
An injection of antiepileptic drugs is often necessary to stop the seizure. Long-term measures consist of the administration of drugs such as levetiracetam, valproic acid or lamotrigine. This treatment often leads to the complete prevention of epileptic seizures.
However, in stubborn cases, a surgical solution must also be considered. In epilepsy surgery, the area of the brain that triggers the seizure is first localized and then the abnormal brain tissue is removed. In the case of symptomatic epilepsy, the underlying organic brain disease must also be treated.
The risk of SUDEP in epilepsy can be reduced by various measures. In addition, it is very important that the doctor adheres exactly to the medication intake. Irregular intake of medication can prove to be a very high risk of SUDEP. The medication should not be stopped suddenly.
In order to prevent a nocturnal epileptic seizure, the patient should sleep in the supine position and, moreover, not be left alone. At the same time, a healthy lifestyle with a balanced diet and plenty of exercise has a positive effect. Alcohol should be avoided. If the epilepsy cannot be controlled with medication, surgical measures or the use of a vagus nerve stimulator can help.
Since the patient dies in a SUDEP, no follow-up treatment can take place on the patient. However, the underlying disease epilepsy, which is responsible for SUDEP, is sometimes inherited. In these cases, the probability of a SUDEP is also increased. In order to detect hereditary epilepsy at an early stage, a genetic test should be carried out.
If epilepsy is present, it should be treated with medication immediately. It is important that you take your medication regularly, exactly as prescribed by your doctor. In addition, alcohol consumption and smoking should be avoided and an overall healthy life should be led. This should also consist of a regular daily rhythm, regular physical activity and avoiding obesity through a healthy diet.
Since epileptic seizures can be particularly risky at night, it is advisable to sleep on your back and next to another person as a precaution. Even if there is no effect, epilepsy medication should never be stopped suddenly and without consulting the doctor treating you. If the epilepsy cannot be treated with medication, surgical treatment must be considered in addition to non-surgical vagus nerve stimulation.
In addition, if epilepsy is present, regular check-ups by a cardiologist should be carried out in order to identify and treat cardiac arrhythmias that can cause SUDEP at an early stage.
You can do that yourself
The characteristics of this disorder do not allow self-help measures to alleviate existing symptoms or even recovery. SUDEP is a case of sudden death of the person concerned, which researchers and scientists have not yet been able to clarify.
The person affected dies during an epileptic seizure. For this reason, everything should be done to investigate the causes of a diagnosed epilepsy in good time. The triggers of epilepsy should be found and avoided to reduce the risk of another seizure. The patient should inform himself sufficiently about his illness and be aware of the possible consequences. Parents are encouraged to educate their child and avoid risk factors.
If an epileptic seizure occurs, an emergency service must be alerted as soon as possible. In addition, first aid measures should be taken by those present to avoid possible complications. After a seizure, a comprehensive examination is recommended. Even with a diagnosed epilepsy, there can be changes in the course of the disease, which can be determined by targeted test procedures. In some cases it has been shown that the causes of the seizure disorder can change. You should react to this in good time, so that after each seizure you have suffered, a corresponding clarification should take place.