Epilepsy is a brain, or neurological, disease that causes people to have seizures. With epilepsy, brain cells send too many electrical signals, too quickly. This brain storm can cause a variety of changes, including loss of consciousness, muscle spasms, repeating movements, and more.1,2
About 7 out of 10 people with epilepsy will respond to the first 1 or 2 medicines and become seizure-free. About 3 out of 10 will find that medicines do not seem to control their seizures. When this happens it is called drug-resistant epilepsy.3
Drug-resistant epilepsy is epilepsy that is not controlled by drugs. About 1 in 3 adults and about 1 in 4 children are thought to have it. Epilepsy is said to be drug-resistant if the person tried 2 anti-seizure drugs and did not become and stay seizure-free. It is also called refractory, uncontrolled, or intractable epilepsy.4,5
Adults and children with drug-resistant epilepsy need to be seen in a level 3 or 4 epilepsy center. These centers specialize in treating epilepsy and offer more services and treatments than a general neurologist.
An epilepsy monitoring unit is one of the many special services offered in a level 3 or 4 epilepsy center.
What is an epilepsy monitoring unit?
An epilepsy monitoring unit is located in a hospital. It includes a special set of rooms built to gather information about someone with epilepsy. These rooms include an EEG (electroencephalogram) and video/audio equipment to track a person’s seizures over days. This information can help doctors diagnose and find the right treatments for hard-to-control seizures.6
Epilepsy monitoring units are set up slightly differently for adults than for children. This is because a child staying in a unit for days will need to have an adult caregiver with them at all times. Adults may have visitors but normally do not need a loved one with them around the clock.
Who needs an EMU?
An epilepsy monitoring unit gives your doctor a more complete picture of what is happening in your brain. You may be referred to an epilepsy monitoring unit if your epilepsy team needs to better understand:6
- Exactly what type of seizure you are having
- Exactly where in the brain the seizures are taking place
- Whether surgery may be a good treatment option
- Whether your anti-seizure medicine needs to change in some way
An epilepsy monitoring unit may be needed for your doctors to catch your seizure as it is taking place. An EEG can only record your brain’s activity at the moment of a seizure. Some people have unusual brain activity after a seizure, but some do not.
What happens in an epilepsy monitoring unit?
Your healthcare team will help you plan for your stay in the unit. You may need to pack certain clothes or slowly reduce or stop some of your anti-seizure drugs before your stay.6
After you check in, the team will attach dozens of electrodes to your head. These electrodes will connect to the EEG monitor to measure your brain activity 24 hours a day. You will also be recorded on video. An average stay is 3 to 7 days, but it may be less or more.6
A nurse, an EEG technician, and doctors will monitor your brain activity 24 hours a day from a nearby room. You will have a television. Most people also bring a laptop, smartphone, games, puzzles, or craft supplies to pass the time.6
During your stay in the unit, your doctors may try to trigger seizures by changing your anti-seizure medicines. Or, they may expose to you another trigger such as fast breathing, flashing lights, or lack of sleep.
This is done so the EEG can record what is happening in your brain. Video allows doctors to see any physical changes you may not be able to explain yourself. Audio allows them to listen as you describe what you feel before or during a seizure.
After leaving the unit, you may need to stay in the hospital another day or 2 to make sure you are safe to go home.6
Seizure monitoring at home
As with any hospital stay, an epilepsy monitoring unit can be expensive in both money and time. That is why some long-term EEG tests may be done at home. This may be an option for some people with uncontrolled epilepsy.