Status Epilepticus: What to Know About This Potentially Deadly Seizure Complication

Status epilepticus (SE) is a Latin term that describes prolonged seizure activity. The condition was first described on Babylonian stone tablets all the way back in the seventh century B.C. But it was not until the 1800s that people gave it a proper name and started writing and studying it.  

Regular seizures are caused by electrical storms in the brain, and they usually lose steam and resolve on their own within 2 minutes. The difference with SE is that the storm becomes its own trigger, and this creates a vicious cycle that is hard to break. At first people may mistake SE with a regular seizure because the symptoms are the same. But, as time goes on, the person with SE typically does not wake up (regain consciousness). 

What is status epilepticus? 

The definition of status epilepticus has varied over time. But most experts define SE as when someone has:

• A single seizure that lasts longer than 5 minutes 

• Two or more seizures and does not regain full consciousness in between them 

Even though “epilepticus” is in the name, someone does not need to have epilepsy to have status epilepticus. Epilepsy is the underlying cause in 16% to 38% of kids and 42% to 50% of adults. 

The most common cause of SE in children is fever. In adults, the most common cause is a sudden environmental change in the brain — like bleeding, head trauma, or a drug overdose.

The good news is that SE is very rare and most people with epilepsy will never have it. SE is more common in young children, males, and older adults. 

Types of status epilepticus 

There are several different types of status epilepticus. The type of SE — and the way it appears — depends on which parts of the brain are affected by the seizure activity. 

The categories (or types) of SE include:

• Convulsive: This is the most common type of SE and accounts for 70% of cases. It causes the most recognizable seizure — when someone loses consciousness and their whole body shakes. This type of SE is caused by excessive release of stimulating nerve chemicals over a large part of the brain. 

• Non-convulsive: This kind of SE may look like episodes of staring or unconsciousness. It’s driven by a specific type of nerves (GABA cells) that are designed to calm brain activity. This is why it makes someone look like they’re out of it or sleeping. The seizure activity may be hard to see on examination, but an electroencephalogram (EEG) test can pick it up.

• Focal motor: This type of SE causes shaking of just one part — on just one side — of the body. It occurs because the storm of seizure activity is contained in one specific part of the brain.

• Myoclonic: This appears as jerking, twitch-like movements every 1 to 5 seconds. It’s more common when someone has a brain injury due to a lack of oxygen.

• Refractory: This is when SE doesn’t respond to medicine.

Signs of status epilepticus

Seizures can be frightening to watch — the person often loses all control of their body, disappears into a trance-like state, or has uncontrollable shaking or jerking. 

The signs of status epilepticus are the same as a normal seizure:

• Rhythmic shaking or twitching, either of the entire body or parts of the body

• A fall to the floor and loss of control of bowel or bladder functions

• Continuous, rapid blinking or twitching of the face

• Sudden crying out or unusual noises

• Very stiff appearance, either the entire body or just one area (such as the legs, arms, face, or clenched teeth)

• Jerking movements that may happen just once or repeatedly 

• Difficulty speaking 

• Irregular breathing 

• A “spacey” look

• Confusion, especially once the seizures stop

The difference is how long it lasts. Usually a regular seizure lasts less than 1 minute, and the person quickly starts to recover after it ends. It might take them more than 5 minutes to fully recover, but they do not have ongoing or repeated seizures. But this is not the case with SE. 

What causes status epilepticus?

Status epilepticus can be caused by existing health conditions — like epilepsy or brain tumors. But it can also be caused by new or sudden changes in the brain — like drug overdose or strokes.

Chronic (long-term) medical conditions that can be potential triggers of status epilepticus include:

• Epilepsy (30% to 40% of people with SE have a history of epilepsy)

• Alcohol withdrawal (usually from chronic, heavy drinking)

• Brain tumors

• Old brain injuries or strokes

• Autoimmune disorders (where the immune system accidentally targets nerve cells)

But new or abrupt changes in the body can cause SE, too. The brain is sensitive to its environment — it doesn't like sudden changes in temperature, pressure, oxygen, or electrolyte levels. These changes can trigger a large release of electrical activity that results in seizures that may be difficult to stop.

Acute (sudden) triggers of SE can include:

• Infections in the brain

• Fevers (especially in children)

• Abnormal chemistry in the brain due to things like low levels of glucose or sodium or high levels of liver toxins

• Strokes

• Head trauma 

• Medication side effects

• Withdrawal from substances like alcohol, benzodiazepines, or barbiturates

• Low oxygen to the brain

• Very high blood pressure

What is the treatment for status epilepticus?

Status epilepticus is a medical emergency and requires immediate hospitalization. Once at the hospital, healthcare providers will work to find the underlying cause while trying to stop the seizure with IV (intravenous) medications. 

The most common medications used to treat SE are: 

• Benzodiazepines: lorazepam (Ativan) and diazepam (Valium)

• Antiepileptics: fosphenytoin (Cerebyx), phenytoin (Dilantin), levetiracetam (Keppra), and valproic acid (Depakene)

Healthcare providers may use different combinations and doses of these medications to stop the SE. At the same time, they’ll also look for the underlying cause. This may require: 

• Blood and urine tests

• Lumbar puncture (spinal tap) 

• EEG

• Brain imaging, like a CT scan or MRI

And once they find the underlying cause, they’ll also treat that condition to help stop the seizures.

What happens if status epilepticus goes untreated?

Untreated SE can result in severe brain damage or death. As many as 20% of people with SE will not recover. This is partly because the event that triggered SE is often serious — like severe head trauma. But it’s also because SE creates damage of its own. 

Quick action leads to the best chance of recovery from SE. So go to the hospital right away. People with known risks for SE (such as epilepsy) can benefit from living with others who can help if they become unconscious. This is why it’s important to take prescribed seizure medications on time to keep seizure activity to a minimum. 

Why trust our experts?

Written by:

Valerie Anne Jones, MD

Val Jones, MD, is a physician who is certified by the American Board of Physical Medicine and Rehabilitation (ABPMR).

Edited by:

Katie E. Golden, MD

Katie E. Golden, MD, is a board-certified emergency medicine physician and a medical editor at GoodRx.

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