Epilepsy

The Great News About Treating Epilepsy and Seizures

The ability of medical science to treat epilepsy and seizures has never been better than it is right now. We have learned so much about the various epilepsies and what actually causes the different types of seizures. New diagnostic methods and better medications have been developed in just the past several years. This advance in the understanding of epilepsy has led to ever more careful and precise diagnoses. Once the diagnosis is correctly made it points to the best medications to use. Anywhere from 75% to 90% of people with epilepsy will have it successfully treated with today’s treatments.

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Treating Epilepsy and Seizures – The First Step

Once the diagnosis is made, the generally accepted guideline for treating epilepsy and seizures is to start the medication regimen using just one medication. Which medication to use as the first choice depends on the type of epilepsy and other considerations individual to each person. In a typical situation the epilepsy specialist will start that one medication at a medium dosage and slowly go up in dose until the seizures stop or side effects become a problem.

Treating Epilepsy and Seizures – #1 – After That First Step

So let’s assume that the dose of that first medication is gradually moved upward and at some point the seizures have stopped and any side effects of the medicine are minimal, or at least tolerable. Boom, goal reached, all is good, do no more.

Treating Epilepsy and Seizures – #2 – After That First Step

But now let’s assume that the dose of that first medication is gradually moved upward and at some point side effects start to become a problem. And let’s say that at the dosage where the side effects get in the way of going higher the seizures are only half controlled. The next step in the treatment plan gives the person with epilepsy and the doctor a fork in the road. One path forward is to stop the first medication and instead start a different medication. And then follow the same method with the second medication, start at a moderate dose and gradually go to higher doses as needed. The other path forward is to bring down the dose of that first medication so that the side effects are less and then add a second medication.

A Reader Asked:

If someone has seizures can’t you just give them one of the medicines to stop seizures? It doesn’t seem like it should be that complicated.

A good thought and a good question. All of neurological science would be happy if this were the case. Phenobarbital, the first medication for epilepsy, was introduced over 100 years ago. It would have been so wonderful if that were the one-and-only seizure medication we ever needed. While still in use, phenobarbital is helpful without problem side effects in only a few people who have seizures. In children it can cause problematic behavioral changes and can be toxic to nerve cells. It might even lower a child’s I.Q. (intelligence quotient). The changed behavior can create problems in school and in socializing. Epilepsy is not just one medical condition, it’s a set of medical syndromes that differ from each other. Newer medications for seizures have been developed that, for many people, work as well or better than phenobarbital with far fewer side effects.

But the reader’s question does not stop there. There’s a huge practical use and ethical debate in the medical world. Because, in the poorer countries (e.g., rural Africa) up to 85% of the 50 million people with epilepsy are unable to get any medicine. Compared to no treatment at all, phenobarbital is a good choice. It works and most, even poor, health systems can afford it. The World Health Organization, the International League Against Epilepsy, the Global Campaign Against Epilepsy, and the International Bureau for Epilepsy, promote phenobarbital use when nothing else is available. As a result, the value of phenobarbital is being reappraised. So, to some extent, the reader might be correct.

About the Medications Used for Treating Epilepsy and Seizures

There are many medications used to treat seizures and all of them work. In fact, all of them work just about as well as the rest of them. But, some medications do work better for some types of seizure, and the epileptologist will chose one that works for the person’s type of seizure and any individual needs. And beyond that, each person has a certain type of seizure and there are several medications that will work for that seizure type. So, how to choose which medication? In this situation, since they all work equally well, the choice depends on side effects and how easy the medication is to use. It also depends on whether the person is taking other medications that might be a problem with the seizure medication. And, of course, if they both work the same, whether one medication is considerably more expensive than another.

Seizure Types – These Seizures and Those Seizures

As one might guess at this point in the discussion, there are several different seizure types. The many types of seizures are often grouped together into four main categories. Adding to the confusion is that the names of some of these seizure types have recently been changed by the International League Against Epilepsy. We’ll explain that a bit more below.

• One group is the group called “Partial Seizures”. The name for this group has now been changed to “Focal Seizures”. This group includes seizures that start out as a focal seizure (affecting just one body part) but then spread to become “generalized seizures”, affecting the whole body.
• This next group has been called “Primarily Generalized Tonic-Clonic Seizures” for a long time. The new term for this group is “Bilateral Tonic-Clonic Seizures”.
• Then there is a third group called “Absence Seizures”.
• And finally there’s a group called “Atypical Absence” seizures. There are atypical absence seizures and then two further subtypes, “Atonic Absence Seizures” and “Myoclonic Absence Seizures”. In the past they were called petit mal seizures. Petit mal is French and the literal translation is “little evil”.

As we said above, different medications work better in certain types of seizures, so getting the correct diagnosis for the seizure type is important for the treatment to work.

Medications Used for Treating Partial Seizures

Four medications, carbamazepine, lamotrigine, levetiracetam, and oxcarbazepine are the best for partial or focal seizures, including partial or focal seizures that then become generalized seizures. One of these four is usually (but not always) the best starting medications for these specific types of seizures. But, here’s why everyone with seizures needs to work with a neurologist who’s an epilepsy expert. Carbamazepine and oxcarbazepine might worsen absence seizures or myoclonic seizures, and lamotrigine might make myoclonic seizures worse. So, a wrong diagnosis can put a person in more, rather than less, trouble.

Medications for Primarily Generalized Tonic-Clonic Seizures (New Name: Bilateral Tonic-Clonic Seizures)

There are three medications, lamotrigine, levetiracetam, and valproic acid or divalproex sodium, that are best for primarily generalized tonic-clonic seizures, now called bilateral tonic-clonic seizures. And, as mentioned above, lamotrigine might make myoclonic seizures worse. So, as always, care with making the right diagnosis is needed.

Medications for Absence Seizures

Ethosuximide and valproic acid or divalproex sodium are the ones best for absence seizures.

Medications for Atypical Absence, Atonic Absence, or Myoclonic Absence Seizures

And, finally, lamotrigine, levetiracetam, and valproic acid or divalproex sodium are best for atypical absence, atonic absence, and myoclonic absence seizures.

Well, All of That Seems Simple Enough After All

Well, not really that simple. Here’s the rub. Each of these several medications has its own unique effects, specific possible side effects, and the potential for being a problem with other medications a person might need to take. Plus, for any individual person, a medication might act differently, mainly having different side effects.

Seizures Medications and Pregnancy

Here an example of a problem of seizure medications interacting badly with other medications. Some epilepsy medicines can lower the amount of birth control pill hormone in a woman’s system. Thus, if one is not careful to adjust for this, she could have an unplanned pregnancy. And speaking of pregnancy, some of these medications are safer than others during pregnancy, and pregnancy itself can change the way the body handles these medications. The art and the science of medication use for epilepsy are both needed, and skill and experience are needed, in treating epilepsy and seizures. It actually is complicated!

Treating Epilepsy and Seizures – It’s Not All That Simple

Unless your doctor is a real expert, treating epilepsy and seizures can be difficult and complicated. And, as with any doctor, it helps a bit if the doctor has a good “bedside manner”. In fact, it’s interesting to realize that the doctors who are trained experts in neurology have their own doctors’ group, the American Academy of Neurology. But having additional expertise beyond this group, the doctors who know best about treating epilepsy and seizures have an even more specialized physicians’ group, the American Epilepsy Society.

A Group Making Patient Care Better – International League Against Epilepsy

There’s also a group that is a “people’s group”. It’s a group that has chapters and members all over the world. They provide quality information about epilepsy, support research and training on epilepsy, and work to improve patient care. The group is called the International League Against Epilepsy. They were started back in 1909 and the group now has over 100 local chapters in countries around the world. The International League Against Epilepsy is important because they help decide changes in the names of seizures and epilepsy and then let everyone know about these changes. There were some recent changes that we mentioned above and explain further below.

New Names for Seizure Types from the International League Against Epilepsy

The most recent new names for the seizure types were created about two years ago. The International League Against Epilepsy sent out new names for a couple of seizure types. For example, the seizures that used to be called “partial” seizures are now called “focal” seizures. And, the ones that were called “primarily generalized” seizures are now called “bilateral tonic-clonic” seizures. Here’s a link if you are interested for more details. It’s a 12-page paper, Fisher et al., Epilepsia, 58:531.

Cannabidiol

(If you’re one of our paid subscribers, you can also read our page on Cannabidiol for Epilepsy for more information on cannabidiol.

Cannabidiol is a natural product with no psychological effects. It’s found in the cannabis (marijuana) plant. THC (tetrahydrocannabinol) is the other and more well-known natural product in marijuana. THC is the one that gives marijuana its reputation for making one feel good and the one that provides users a “high”. Cannabidiol does not have these “psychological buzz” effects, Unfortunately, cannabidiol keeps popping up in the news as though it is the same as THC.

Dravet Syndrome

Dravet Syndrome is why cannabidiol is associated with epilepsy. Severe myoclonic epilepsy of infancy is the old name for Dravet Syndrome, since it begins when an infant is about six months old. The seizures in Dravet Syndrome are febrile seizures, that is, happening in hot temperatures or when the infant is feverish. Cannabidiol works well for treating Dravet Syndrome seizures. There is an approved, brand name medication, Epidiolex, that is a cannabidiol oral solution. The FDA approved it in mid-2018 for Dravet Syndrome (and for Lennox-Gastaut Syndrome). It is not known if Epidiolex works to treat other types of seizures or epilepsy.

Helpful Links:

Centers for Disease Control and Prevention on Treating Epilepsy

Epilepsy Foundation on Treating Seizures & Epilepsy

Mayo Clinic on Epilepsy Treatments

Johns Hopkins Medicine on Treatment for Epilepsy & Seizures

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.

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.

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