Falling or choking is a concern among people living with epilepsy — but it’s not the only one. The risk of sudden unexpected death in epilepsy (SUDEP) is also a fear.
If you or a loved one has seizures, a number of questions might run through your mind. For example, can you die from an epileptic seizure? Or, can you die from a seizure in your sleep?
The short answer is yes, but while possible, death from epilepsy is also rare.
When you hear of someone dying from a seizure, you might assume the person fell and hit their head. This can happen.
SUDEP, however, isn’t caused by injury or drowning. It refers to a death that’s sudden and unexpected. Most, but not all, deaths occur during or right after a seizure.
The exact cause of these deaths is unknown, yet researchers believe an extended pause in breathing leads to less oxygen in the blood and suffocation. Another theory is that the seizure causes a fatal disruption in heart rhythm, resulting in the heart stopping.
Each year there are 1.16 incidents of sudden death for every 1,000 people with epilepsy, according to the Centers for Disease Control and Prevention (CDC). Experts believe it’s likely that many SUDEP cases aren’t reported and so the number of SUDEP cases may be higher.
What is a seizure?
Your brain contains countless nerve cells that create, send, and receive electrical impulses. Seizures occur when a sudden electrical disturbance in the brain causes these nerve cells to misfire.
This can trigger:
- uncontrollable jerking of the body
- loss of consciousness
- temporary confusion
- loss of awareness
Seizures vary in severity and length. Milder seizures may not cause convulsions and may only lasts 30 seconds. Other seizures, however, can cause a person’s entire body to shake rapidly and last as long as 2 to 5 minutes.
A seizure can be a one-time event after a head injury, stroke, or infection. Epilepsy is a condition characterized by recurrent seizures.
What are risk factors for a fatal seizure?
Although rare, it’s still important to know about risk factors for SUDEP. If you’re at risk, you can take steps to help prevent a fatal seizure.
While still low, the likelihood of dying from a seizure is higher in people who have a history of frequent, uncontrollable seizures, as well as those who have a history of tonic-clonic seizures (sometimes called grand mal seizures).
Tonic-clonic seizures are a severe type of epileptic seizure. These can cause sudden loss of consciousness, convulsions, and loss of bladder control.
The chance of sudden death is also higher in individuals whose seizures begin at a young age. However, unexpected death is extremely uncommon in young children.
The risk of sudden death also increases the longer you live with epilepsy.
Not taking your medication and drinking too much alcohol may also contribute to SUDEP. Seizures that occur during sleep seem to be a risk factor for SUDEP.
- history of frequent, uncontrollable seizures
- tonic-clonic seizures
- having seizures since you were very young
- a long history of epilepsy
- not taking anti-seizure medication as prescribed
- drinking too much alcohol
How to reduce your risk for a fatal seizure
Take your anti-seizure medication as directed to prevent seizures. See a doctor if your current therapy isn’t effective. Your doctor may need to adjust your dosage or prescribe a different medication.
It’s also helpful to identify seizure triggers. These differ from person-to- person, so pinpointing your specific triggers can be tricky. It might help to keep a seizure diary.
Record when seizures happen, and then note information that might be relevant. For example:
- What time of day did the seizure occur?
- Did the seizure happen after exposure to bright, flashing lights?
- Did you drink alcohol before a seizure? If so, how much?
- Were you under emotional stress before a seizure?
- Did you consume caffeine before the seizure?
- Did you have a fever?
- Were you sleep deprived or overly tired?
Keeping a seizure diary can identify patterns or situations that bring on seizures. Avoiding your triggers could potentially reduce your number of attacks.
Use the “notes” feature on your phone to track seizures, or download a seizure diary app to your smartphone or tablet.
You can also reduce the risk of a fatal seizure by avoiding too much alcohol. Additionally, make sure your family knows seizure first aid.
This includes putting you on the floor and lying you on one side of your body. This position can help you breathe easier. They should also loosen neck ties and unbutton shirts around the neck.
If a seizure lasts longer than 5 minutes, they should call 911.
How are seizures diagnosed?
Conditions that can mimic a seizure include a migraine attack, stroke, narcolepsy, and Tourette syndrome.
To accurately diagnose a seizure, your doctor will ask about your medical history and the events that led up to the seizure. You may have an electroencephalogram (EEG), which is a test that records the electrical activity in the brain. It helps detect abnormalities in brain waves.
An EEG can diagnose different types of seizures, and help predict whether a seizure is likely to occur again.
Your doctor may also order tests to determine the underlying cause of seizures. A neurological exam can look for abnormalities in your nervous system, whereas a blood test can check for infections or genetic conditions that may contribute to seizures.
Imaging tests are also used to look for tumors, lesions, or cysts in your brain. These include a CT scan, an MRI, or a PET scan.
How do you treat a seizure?
A seizure triggered by an isolated event doesn’t usually require treatment. If you have more than one seizure, however, your doctor may prescribe an anti- seizure medication to prevent future attacks.
Different medications are effective against seizures. Your doctor will recommend one or more possible medications based on the type of seizure.
When anti-seizure medications don’t work, your doctor may recommend surgery to remove the part of the brain where seizures originate. Keep in mind that this procedure only works when seizures start in the same place.
You might also be candidate for stimulation therapy. Options include vagus nerve stimulation, responsive neural stimulation, or deep brain stimulation. These therapies help inhibit seizures by regulating normal brain activity.
What’s the outlook for people with epilepsy?
Living with epilepsy has its challenges, but you can live a normal life with the condition. Some people eventually outgrow seizures, or go years in between seizures.
The key to managing attacks is understanding your risk and taking steps to avoid common triggers.
According to the Epilepsy Foundation, with treatment, nearly 6 out of 10 people living with epilepsy will become seizure-free within a few years .
Yes, a seizure can cause death. But while possible, this is a rare occurrence.
Talk to your doctor if you feel that your current anti-seizure therapy isn’t working. You can discuss a different combination of medication or explore add-on therapies to help control your attacks.
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