a girl on a bed with an EEG electrode array on her head sitting with smiling doctor in a white lab coat and a woman in a denim jacket, presumably her motherBrain Wave Test for Epilepsy
Brain Wave (EEG) Test for Epilepsy

What Is Epilepsy?

Epilepsy is an overly active brain. Usually we want our brains to be active. But in epilepsy the brain activation mechanisms are way too active and the brain inhibitory mechanisms, the “brakes” for the brain, aren’t strong enough. And, when some area of the brain is too active, odd situations result. But the question on, “What is epilepsy?” Sorry for the cliché, but it’s complicated. First, epilepsy is not just one medical condition. “Epilepsy” is one term to name several medical conditions with different causes and needing different treatments. And each person’s epilepsy is not the same forever. Epilepsy in a person changes over time. You might ask what causes this imbalance between activation and inhibition. Genetics play a role. And brain development before and after birth, in infancy, childhood, adolescence, and young adulthood. Also, brain trauma or toxic exposure can cause it.

So, That’s What Epilepsy Is – What Does It Look Like?

First, you can’t always tell when someone is having a seizure. What a seizure looks like behaviorally depends on what part of the brain is over activated. The parts of the brain that control muscles are called motor areas. A seizure in an area that does not control muscles does not make the person move at all. For example, as we mention below, an “absence” or “petit mal” seizure just results in a brief blank staring expression. If someone does move with a seizure one can guess where in the brain the seizure activity is by which muscle groups move. An arm or a leg or part of the face might jerk with a muscle spasm. This spasm can spread to involve the whole body. Or, if muscles quit working, an arm or leg or part of the face might go limp or droop.

More About The Seizures That Are Harder to See

With these seizures the person has no visible change or only a small change in behavior, such as the blank stare we mentioned in the last paragraph. This blank stare is called an “absence” seizure. (It used to be called a petit mal seizure). Another type of seizure can be simple confusion, someone losing track of what’s going on and unable to understand what’s happening. Maybe when they talk it doesn’t make any sense. And, really important here, the person is unable to get back on track. And finally, there might be no change you can see. With no change in a person’s behavior it might be another type of epilepsy (see the paragraph below, “Epilepsy – What Does It Feel Like?”)

Does the Person Know What is Happening to Them?

Whether or not the individual is aware of their seizure is an important clue about a seizure. A person having a seizure might know what’s going on. An arm or a leg goes limp and they’ll say, “What’s wrong? I can’t move my leg.” This is called an “aware” seizure. Other times an individual has no idea what’s happening to them. One side of their face goes limp and droops and they don’t’ know it. If the person doesn’t know what’s happening, it’s called an “impaired awareness” seizure. Beyond changes in just one part of the body the person might pass out, just plain faint and collapse with complete loss of consciousness.

One of our readers in Ireland asked:

Can people with epilepsy hold a job?

We were surprised to learn that a few years ago this question became a big scandal-like national discussion in Ireland. A well-known media personality who actually had epilepsy said in an interview that she wouldn’t hire someone with epilepsy. It was a secret that she herself had epilepsy. As you can imagine, that didn’t go over well. There are over 40,000 people in Ireland with epilepsy. It eventually all got sorted out, but the bottom line is, of course people with epilepsy can hold a job. It just depends on the type of epilepsy and the type of job. Most people with epilepsy can hold most jobs. Exceptions would be if a person has occasional severe seizure and the job is operation heavy equipment. This would not be a good combination.

Some Seizures Are Really Obvious

Most people, even those who don’t know much about seizures and epilepsy, know about the big seizures. These are the seizures that used to be called grand mal seizures. They’re dramatic and scary to see. (Grand mal seizures are now called “generalized-onset or unknown-onset tonic-clonic seizures; see below.) With these seizures the over active brain areas cause severe muscle spasms of many muscle groups all at once. In these brain areas all the nerve cells are firing at the same time. The brain activity assumes control over all the muscle groups. Such seizures can cause falls and other injuries. These can be impaired awareness seizures, that is, the person doesn’t understand what is happening to them. The individual might even lose consciousness, that is, pass out.

Epilepsy – What Does It Feel Like? Emotion Seizures

First, back to seizures in which there is no change in how a person moves or behaves. Some seizures don’t move muscles, they change emotions. Since the seizure doesn’t move any muscles, there’s no change in how a person behaves. What does a seizure that changes only emotions look  like? It depends on what part of the brain is overly active with all the nerve cells firing. These seizures might look like anxiety, or fear, or panic attacks. They might cause outbursts of laughing or crying for no reason. Oddly enough, and rarely, a person can be overcome with joy and bliss, but joy and bliss that doesn’t make any sense. It’s caused by a seizure, seizure activity in the brain. And, going the other way, a seizure can cause angry outbursts, hostility that makes no sense, that’s really out of place.

What Can Set Off a Seizure?

Most often there is nothing that can be seen that triggers a seizure. But at times there are situations or things that can set off a seizure, like a high body temperature, a fever. Along with a fever, being ill and not drinking enough liquids can cause a seizure. Other common triggers are things like missing a dose of a medication for seizures, or having low blood sugar, or getting far too little sleep. High levels of emotional stress and changing hormone levels through the month are possible triggers. Drug and/or alcohol misuse or abuse can set off a seizure. Also the one talked about for movie theaters and TV, flashing lights or bright lights. Infants can have seizures from too little vitamin B6.

A Common Condition

Epilepsy is one of the most common medical conditions. Epilepsy has been known since ancient times. (Here’s a scholarly article on the history of epilepsy.) But having medications and other treatments that work and are safe is recent history. Epilepsy is common but, sadly, it’s often misunderstood. Even more sad, even family members and friends can be uninformed about epilepsy. Every person with epilepsy agrees that getting the seizures under control, that is, getting a treatment that will work, is a very welcome relief. While physicians that specialize in treating epilepsy know pretty much about what causes a seizure, there’s still more to learn. The good news now is that we have medications (and if needed, surgeries) that do work. And, new treatments that work even better are always coming.

A Definition for Epilepsy – What Is It?

Epilepsy. One word. A medical condition. Sounds simple. But it’s not. There are many medical conditions and nervous disorders that are all called “epilepsy”. So, as a result, what epilepsy means to you might be different from what it means to your neighbor. Anybody hearing the word “epilepsy” should be skeptical on what it means until you get further clarification. All epilepsies are brain-based conditions. The nerve cells in a brain area all fire off at once and the result is a “seizure”. What makes an area of the brain do this? Lots of things. There are different types of seizures and different types of epilepsy. So, really, one might see each person’s epilepsy as unique to him/her, almost like a fingerprint. There are mild epilepsies. The right medicine or combination taken daily for mild epilepsy can usually prevent seizures. Some severe epilepsies can be more difficult to control.

Putting Smaller Puzzle Pieces into a Bigger Whole Picture

Physicians who are seizure experts, epileptologists, put together, like a jigsaw puzzle, patterns of muscle movements and emotions to form specific sets of symptoms. This specific sets make up several common and rare types of epilepsy. Altogether, there are too many types to list them all here, though we list some below. Simple and complex focal, primary and secondary generalized, motor and non-motor seizures, and typical and atypical absence seizures. As we said above, seizures can happen with and without the person being aware of the seizure. At the bottom of the page are helpful links to sites with more information.

photo of head MRI scan images mounted on a view box in a dark room like radiologists use
Head MRI scan images – photo by Dmitriy Gutarev

There’s a New Seizure Type Classification System

There’s an international organization that recently (in 2017) developed a new way to group seizures into types. It’s the International League Against Epilepsy, or ILAE.  The plan is for this new system of seizure groups to help doctors diagnose and treat epilepsy. The International League Against Epilepsy made a set of new terms to use in the new system. For example, another word for “focal” is “partial”. “Aware” means the person knows what’s happening to them and “impaired awareness” means they don’t know what’s happening. “Motor” means involving the muscles, that is, twitching or moving. “Myoclonic” means twitches or jerks, while “tonic-clonic” means moving back and forth. “Atonic” means limp, no muscle tone or action. Here’s an easier to read list of the new terms.

  • Focal Aware (the person knows what is happening)
  • Focal Impaired Awareness (the person does not know what is happening)
  • Focal Motor Aware or Impaired Awareness
  • Focal Sensory Aware or Impaired Awareness
  • Generalized Absence
  • Focal or Generalized Atonic
  • Focal or Generalized Tonic
  • Focal or Generalized Myoclonic
  • Generalized or Unknown Onset Tonic-Clonic (grand mal seizures)
  • Focal, Generalized, unknown onset epileptic spasms

Here are the 3 Main Groupings of Seizure Types

The International League Against Epilepsy groups seizures into 3 main categories:

  • Focal onset (meaning partial onset)
  • Generalized onset
  • Unknown onset

Each category has several seizure type in it.

The Types of Seizures in the Focal Onset Group

  • Focal aware, motor onset (partial, involving muscles, the person knows what’s happening)
  • Focal impaired awareness, motor onset
  • Focal aware, non-motor onset
  • Focal impaired awareness, non-motor onset
  • Focal to bilateral tonic-clonic

The Types of Seizures in the Generalized Onset Group

  • Generalized motor onset, tonic-clonic
  • Generalized motor onset, other motor
  • Generalized non-motor onset (absence)

Finally, the Types of Seizures in the Unknown Onset Group

  • Unknown motor onset, tonic-clonic
  • Unknown motor onset, other motor
  • Unknown non-motor onset
  • Unclassified, that is, these seizures can’t be placed in another group because of too little information or for other reasons.

What Does All This Mean?

About Focal Onset Seizures

“Focal” has to do with a seizure that starts in one small part of the brain. And, one small part of the brain that is only on one side of the brain. But, these seizures might start in one little spot and then spread out to bigger areas in the brain. A person having s focal seizure might know what is happening to them, that is, “aware”, or might not understand what is happening to them, that is, “impaired” awareness. If the seizure in the small area makes muscles move, it’s a “motor” seizure. If the small-spot seizure does not move muscles, it a “non-motor” seizure. Non-motor seizures might change a person’s emotions or make sensations different.

About Generalized Onset Seizures

“Generalized” onset just means the seizure starts on both sides of the brain. Most always when these “both-sides” seizures start the person does not know what is happening to them, that is, they are most always “impaired awareness.” These seizures might or might not make muscles move, that is, they can be “motor” or “non-motor”. A generalized non-motor-onset seizure is also called an “absence” seizure, just a blank stare.

Seizures Without Epilepsy

Having a seizure does not mean that a person has epilepsy. Things in the environment and physical situations can cause a seizure that is not epilepsy. A high fever, or excessively high body temperature, can cause a seizure, called a febrile seizure. A hard clunk on the head can cause a seizure. (American football has a bad reputation here. European football [soccer] has some such problem but not as much.) A person has to have at least 2 seizures before he/she is said to have epilepsy.

What Is Epilepsy and What Is Not

One can see many seizures. Others one might suspect but can’t see. As in the photo above, physicians run tests to say for sure if there is a seizure, where it is in the brain, and how strong it is. There’s the EEG or “brain wave test” that shows the brain nerve cell electrical activity as signals zip from nerve cell to nerve cell. The girl in the photo at the top of this page is having an EEG done. Brain scans, like MRI and CT, are other tests to help to show if a person has epilepsy.

woman with red hair sitting on the platform of an MRI machine "giving five" to the blond woman MRI technician in a white clinical coat
After the MRI scan

Treating Epilepsy

Once the doctors says, yes, this is epilepsy, it’s important to start treatment right away. (See our page on treating epilepsy.) Seizures are harmful to the brain. They’re probably not good for the rest of the body, either. So, not having seizures is healthy. Starting treatment quickly also helps keep your family calmer and helps to keep friends. About three out of four people with epilepsy can have their seizures stopped or almost stopped with today’s medications. A neurologist who is an epileptologist specialist will be good at matching the right treatment to the individual’s type and severity of seizures. Some medications work best for some seizures. More complex combinations of medications might work best for difficult-to-treat seizures. If no medication works well or works well enough, surgery can also be a choice.

How Do People With Epilepsy Do in the Long Term?

People with epilepsy do quite well once their seizures are under control. Once the seizures are controlled a person gets their life back. That means getting back to a better situation at work or in school. It also means improving life at home and their social life.

Problems for People with Uncontrolled Seizures

For the person with epilepsy, it’s like having a devil on your shoulder to live with the risk of having an surprise seizure. It crushes social life and holds them back professionally. It can even become a problem to get and keep a driver’s license. As you can imagine, there are fewer job choices and hobbies one can do, or at least do safely, if one might have a seizure at any moment. For example, if you might have a surprise seizure it’s probably not a great idea to work on high-rise construction or to have a hobby of underwater diving. A career in computer programming and a hobby of fine art painting might be safer choices.

Helpful links:

National Institute of Neurological Disease and Stroke on Epilepsy

The National Library of Medicine Medline Plus on Epilepsy

Center for Disease Control and Prevention (CDC) on Epilepsy

American Epilepsy Society Home Page

Epilepsy Foundation on What is Epilepsy?

The Mayo Clinic on Epilepsy

A research paper on The History of Epilepsy

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