What is it like?

Here's a typical story: "I get the strangest feeling—most of it can't be put into words. The whole world suddenly seems more real at first. It's as though everything becomes crystal clear. Then I feel as if I'm here but not here, kind of like being in a dream. It's as if I've lived through this exact moment many times before. I hear what people say, but they don't make sense. I know not to talk during the episode, since I just say foolish things. Sometimes I think I'm talking but later people tell me that I didn't say anything. The whole thing lasts a minute or two."

The features of seizures beginning in the temporal lobe can be extremely varied, but certain patterns are common. There may be a mixture of different feelings, emotions, thoughts, and experiences, which may be familiar or completely foreign. In some cases, a series of old memories resurfaces. In others, the person may feel as if everything—including home and family—appears strange. Hallucinations of voices, music, people, smells, or tastes may occur. These features are called “auras” or “warnings.” They may last for just a few seconds, or may continue as long as a minute or two.

Experiences during temporal lobe seizures vary in intensity and quality. Sometimes the seizures are so mild that the person barely notices. In other cases, the person may be consumed with fright, intellectual fascination, or even pleasure.

The experiences and sensations that accompany these seizures are often impossible to describe, even for the most eloquent adult. And of course it is even more difficult to get an accurate picture of what children are feeling.

Dostoyevsky, the 19th-century Russian novelist, who himself had epilepsy, gave vivid accounts of apparent temporal lobe seizures in his novel The Idiot:

Who gets it?

The two temporal lobes (one on each side of the brain at about the level of the ears) are the most common location for the origin of partial seizures, which start in one localized area, also called a seizure focus. The seizures of temporal lobe epilepsy (TLE) can start at almost any age. Some follow a head injury or an infection that affects the brain, such as meningitis. The cause of others is unknown.

There are no good statistics on how many people have temporal lobe epilepsy, or what groups are most often affected.

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The most common type of seizure in temporal lobe epilepsy is complex partial seizures. Children with TLE most commonly pause in whatever they're doing and do not respond if spoken to. About 40% to 80% of people with TLE also perform repetitive, automatic movements (called automatisms), such as lip smacking and rubbing the hands together.

Three-quarters of people with TLE also have simple partial seizures, in which they remain fully conscious. Some people have only simple partial seizures and never have a change in consciousness.

Unfortunately, in about 60% of people with TLE, the seizures spread from the temporal lobe to a wider portion of the brain. This process is called secondary generalization. The result is a convulsive (grand mal) seizure.

After the complex partial seizure or secondarily generalized seizure has ended, patents are often confused for several minutes and then gradually recover.

Temporal lobe seizures usually begin in the deeper portions of the brain's temporal lobe. This area is part of the limbic system, which controls emotions and memory. Some individuals with temporal lobe epilepsy may have problems with memory, especially if seizures have occurred for more than 5 years, but these memory problems are almost never severe.

How is it treated?

For most people, the seizures of TLE can be completely or at least mostly controlled with the medications for partial seizures. Many seizure medicines can be used, either alone or in combination. The choice for adults depends on not only the type of seizure but also on other factors such as whether the person has other disorders or is taking medication for other conditions.

The choice of medicines to begin to treat TLE in young children is much more limited if only the ones approved for children by the U.S. Food and Drug Administration (FDA) are considered. Only Tegretol (carbamazepine) and Dilantin (phenytoin) are approved to be used alone for very young children with partial seizures. Trileptal (oxcarbazepine) is also approved for children over 4 and Depakote and other valproate medicines are approved for those over 10. Outside the United States, Frisium (clobazam) is used for children over 3 years of age.

The seizure medicines approved by the FDA to be used as add-ons with one of the medications just mentioned are

• Topamax (topiramate)
• Keppra (levetiracetam)
• Neurontin (gabapentin)
• Lamictal (lamotrigine)
• Zonegran (zonisamide)
• Gabitril (tiagabine)
• phenobarbital

In practice, however, it is considered not only legal but also ethical for doctors to prescribe medicines for children that have not been FDA-approved for that purpose, if there is evidence or experience to suggest that they are safe and effective. This so-called off-label use of seizure medicines is very common. Parents who have any concern about their child's medication should talk it over with the doctor.

If various seizure medicines have been tried adequately without success, then other treatments may be used. Some people with temporal lobe seizures are candidates for surgery. The operation (called a temporal lobectomy) usually removes only the abnormal part of the temporal lobe, not the entire lobe. Many also benefit from vagus nerve stimulation or the ketogenic diet.

What's the outlook?

The outlook for people with TLE varies greatly, depending on the cause of the seizures. About half of children with TLE outgrow the disorder. Other people, for whom various seizure medicines are unsuccessful, may be evaluated for surgery or other treatments. Many achieve good or complete control of their seizures.

Topic Editor: Gregory L. Holmes, M.D.
Last Reviewed: 10/21/06