How dangerous is epilepsy?
Although an epileptic seizure may look threatening, epilepsy is seldom acutely dangerous. There are ever more and better options for treating epilepsy. Medication or, in some cases, surgery enables most people with epilepsy to live a normal life. So, most people will not need to stick to restrictive rules of living.
It is nevertheless important for people with epilepsy to assess how dangerous their epileptic seizures are by finding the right balance between the (everyday) activities someone can and can't do, for example. As there are so many different types of epileptic seizures, this varies from person to person. The questions below can help to assess how risky a particular activity is.
What does a seizure look like?
Does a person feel a seizure coming on? When do seizures occur? Is there a pattern in that?
Are there any known triggers? (E.g. tension, stress, alcohol consumption)
Can the person come out a seizure alone?
Are there people nearby who can help if the person has a seizure?
You will find more tips/advice to help you assess how risky a particular activity is here.
If AEDs are not controlling the seizures, surgery may be an option. For some types of epilepsy, there is a good chance that the seizures could stop altogether after surgery. During the operation, the surgeons remove the part of the brain that is causing the seizures (the epileptic focus).
But when is someone eligible for surgery? Surgery is considered for people who do not respond well to AEDs and continue to have recurrent seizures which have a significant impact on their life. The risk of accidents during seizures is also taken into consideration. Furthermore, surgery is only possible for focal types of epilepsy. The doctors will finally consider the potential risks of surgery. An operation can sometimes cause permanent brain damage, such as paralysis, loss of speech or memory loss. Surgery is possible at almost any age. The method can vary.
Vagus Nerve Stimulation
Some people with epilepsy can benefit from supplementary vagus nerve stimulation (VNS) therapy. It is supplementary because almost everyone who has VNS therapy continues to take AEDs.
The NVS operation is done under general anaesthetic and takes around one to one and a half hours. During the procedure, the surgeon implants a stimulator under the skin, just under the collar bone. This stimulator is connected to a cranial nerve in the neck, the vagus nerve. Similar to a pacemaker, the device sends regular, mild electrical stimulations through this nerve. The aim of this is to stimulate this nerve to carry signals to the brain. These signals help calm the electrical brain activity that leads to seizures. VNS consequently helps reduce the number and/or severity of the seizures. VNS therapy may be chosen for:
People who, despite taking AEDs continue to have seizures
People who are not eligible for epilepsy surgery
People who, despite epilepsy surgery, continue to have seizures
The stimulator is individually adjusted for each patient. The neurologist will programme the frequency of the electrical stimulation, which will vary from person to person. There will be regular check-ups to monitor the stimulator settings. It usually takes a few months to establish the best settings. Some people may also be given a separate magnet to enable them to give stimulation if they feel a seizure coming on.
When is epilepsy dangerous?
However, situations can arise in which epilepsy poses a danger. A dangerous situation could potentially arise if a person with epilepsy has a seizure. If they were to fall during the seizure, for example, feel no pain and/or injure or otherwise hurt themselves. Status epilepticus can also be a life-threatening situation. Epileptic seizures usually stop by themselves. If a seizure lasts for longer than 5 minutes, it is called status epilepticus. Medical intervention will then often be needed to stop the seizure. In some cases, epilepsy can be fatal. A person with epilepsy can die after an epileptic seizure without any clear cause. The name for this is SUDEP (Sudden Unexpected Death in Epilepsy).
SUDEP (Sudden Unexpected Death in Epilepsy) is when someone with epilepsy dies suddenly and where no other cause of death can be found. According to the Netherlands Epilepsy Society, approximately half of these deaths occur while the person is asleep. There is also much evidence to suggest that almost all SUDEPs follow an epileptic seizure. It is not known how many SUDEP cases occur annually in the Netherlands as a post-mortem is often not conducted. What is known, however, is that there is often evidence of a cardiac or respiratory arrest.
While SUDEP can affect anyone with epilepsy, certain groups are more at risk. It is particularly more likely to occur in people with poorly controlled epilepsy, people with tonic-clonic seizures, people with an intellectual disability and people with highly frequent seizures. The risk of SUDEP is also higher in people who have nocturnal seizures. Good night-time care can help prevent serious complications such as SUDEP.
However, until there is more certainty about why SUDEP happens, preventing it remains difficult. How dangerous epilepsy is depends on several factors. A fact is: the fewer the seizures, the lower the risk. So, it is essential to do everything possible to prevent or limit seizures by taking the AEDs as prescribed, by going for regular check-ups with the attending physician, and by avoiding seizure triggers, for example. It is also crucial that seizures are noticed promptly. There is evidence that SUDEP happens less often if someone is there to help during or immediately after a seizure. A seizure detection system, such as the NightWatch, can ensure someone is alerted if a potentially dangerous seizure occurs while the person is asleep.