Epilepsy – What Does It Look Like?
With epilepsy, usually you can only tell if someone is having a seizure if they move differently. For example, some body part goes limp. For example, a droop or similar change on one side of their face. Or, an arm or a leg that quits working right. Easier to notice are bigger changes. A spastic jerking movement of an arm or leg, or maybe of their whole body.
Seizures That Are Harder to See
There are seizures that are only a small change in behavior, such as a blank stare for a few moments. This blank stare is called an “absence” seizure (this 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 how they behave, we go to another type of epilepsy (see the paragraph below, “Epilepsy – What Does It Feel Like?”).
Does the Person Know What is Happening to Them?
This aware or not aware is another important part of a seizure. Sometimes with a seizure the person knows what is 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 “aware”. Other times with a seizure the person has no idea what is happening to them. One side of their face goes limp and they don’t’ know it. If the person doesn’t know what’s happening, it’s called “impaired awareness”. Beyond that, the person having a seizure might pass out, feint, with complete loss of consciousness.
Some Seizures Are Really Obvious
Most people, even those who don’t know much about seizures and epilepsy, know about the big seizures, that is what used to be called grand mal seizures. They’re awful and dramatic. (Grand mal seizures are now called “generalized-onset or unknown-onset tonic-clonic seizures; see below.) These are severe muscle spasms, spasms of many muscle groups all at once. The part of the brain that controls how we move our muscles is firing all the nerve cells with an active seizure. The brain activity assumes control over all the muscle groups. Such seizures can cause falls and might cause a person to not understand what is happening or to pass out (impaired awareness).
Epilepsy – What Does It Feel Like?
Okay, back to seizures where there is no change in how a person moves or behaves. You see, some seizures change emotions. And, don’t cause any change in how a person behaves. What a seizure that changes only emotions looks like depends on what part of the brain has all the nerve cells firing, that is, is seizing. These seizures might look like anxiety, or fear, or panic attacks. Outbursts of laughing or crying for no reason can be a sign of a seizure. 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. And, going the other way, a seizure can cause angry outbursts, hostility that makes no sense, that is 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 fluids can cause a seizure. Other common triggers are things like missing a dose of a medicine 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 (see Epilepsy Épilepsie Canada on the History of Epilepsy). But having medicines and other treatments that work and are safe is recent history. Epilepsy is common but, sadly, it’s often misunderstood. Even more sad, family and friends can be ignorant about epilepsy and not be understanding. Every person with epilepsy agrees that getting the seizures under control, getting something that will work, is great, a very welcome relief. Doctors know pretty much about what causes a seizure but there’s still more to learn. The good news now is that medicines and surgeries do work and, as treatments, are getting better. And, new treatments 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 me. Anybody hearing the word “epilepsy” should be foggy on what it means without further information. 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, like a fingerprint. There are mild epilepsies. The right medicine or combination taken daily for mild epilepsy can usually prevent seizures. Severe epilepsies can be more difficult to control.
Putting Smaller Puzzle Pieces into a Bigger Whole Picture
Doctors who are seizure experts put together, like a jigsaw puzzle, patterns of muscle movements and emotions to form specific sets of symptoms. This makes up several common and rare types of epilepsy. Altogether, there are too many types to list them all here, though we give a listing of 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 awareness of the seizure. At the bottom of the page are helpful links to sites with more information.
New Seizure Type Classification System
There is an international organization that recently (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 is happening to them and “impaired awareness” means they don’t know what is 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 a 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
3 New Main Seizure Type Groups
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 hit 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 the 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. Doctors do 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.
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 3 out of 4 people with epilepsy can have their seizures stopped or almost stopped with today’s medicines. An epilepsy doctor will be good at matching the right treatment to the individual’s type and severity of seizures. Some medicines work best for some seizures. More complex combinations of medicines might work best for difficult-to-treat seizures. Surgery can also be a choice.
How Do People With Epilepsy Do in the Long Term?
People with epilepsy do well with their seizures under control. Once the seizures are controlled a person gets their life back. That means getting back to a better situation at work. 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.
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
Epilepsy Épilepsie Canada on the History of Epilepsy