Questions About Adult Epilepsy
“Seizure types may vary with age,” Elizabeth Thiele says. “Adults are more apt to have partial complex seizures.” Partial complex seizures can result in a specific disruption of brain activity, such as head trauma, stroke, or brain tumor. Generalized seizures, however, seem to be the result of genetic disorders, and are not as common by comparison. While there are several generalized epilepsies, fewer adults have these types of seizures. In children, however, generalized epilepsies, including myoclonic seizure types and complex-partial seizures, are more common.
“The causes of epilepsy can range from tumors or infection to damage to the brain due to head injury,” says Thiele. Many different causes can result in similar-looking seizure types. Likewise, a single cause can result in many different types of seizures. For example, she says, patients experiencing early-onset seizures-such as infantile spasms-can later develop generalized or other seizure types.
“If your seizures consistently last longer than usual, you should see your neurologist (or primary care physician),” Nikesh Ardeshna says. “This difference does not necessarily mean a change in medications is needed. A patient with epilepsy may just require a change in their medication dosage. Never make changes to your dosage on your own. Always talk with your doctor and take the prescribed amount of your medication. The physician will inquire about and look into causes that might have contributed to the increased duration of seizures such as antiepilepsy drug level, or illness, such as the flu.”
“In general, even though seizure symptoms may change, the root cause is likely the same,” Thiele says. “Most of the time, we try new medications in the hopes of achieving better control. But with refractory epilepsy that proves difficult to control, we look at all possible options.” If, for example, the patient has undergone some change or developmental maturation, a medication not previously effective may be more effective, and worth a second try. A previously tried medication may also be useful in combination with other medications.
“While epilepsy may be caused by individual events such as a head injury, cardiovascular abnormality or stroke, the more we learn about the pathophysiology of epilepsy and its causes, the more we realize that many types do run in families,” Thiele says. Some forms with especially strong ties to heredity include juvenile myoclonic epilepsy, which is characterized by seizures that create quick jerking of the arms, shoulders and, sometimes, legs as well as generalized tonic-clonic seizures; benign rolandic epilepsy (a condition most children outgrow), and benign nocturnal frontal lobe epilepsy (seizure occurring most often during sleep). “There are also many genetic disorders, such as tuberous sclerosis complex, of which epilepsy is a symptom,” Thiele adds.
Neurologists treat a wide array of brain disorders, including epilepsy. Epileptologists are neurologists with extra training in epilepsy, and treat only that condition. “I have 1,200 patients and they all have epilepsy,” says Thiele. But that doesn’t mean you need an epileptologist, she adds. “Most neurologists are extremely competent at treating epilepsy because they’ve seen so many cases and because epilepsy is so common.” In most cases, a neurologist can help you find the proper medication and treatment to control seizures. When cases are particularly complex or resistant to medication, or if surgery may be indicated, a neurologist often will refer the patient to an epileptologist for evaluation.
A lot depends on whether your memory loss is caused by your seizures or a related condition. If your memory loss is directly attributed to your epilepsy, as is frequently the case, gaining seizure control could help eliminate frustrating memory loss. Sometimes, though, the loss is caused by an accompanying condition, such as depression. People with depression frequently experience short-term memory loss, Patel says. If medication is unsuccessful at correcting the problem, non-medicine therapies such as exercises that teach the mind to focus and remember are often helpful.
A complex partial seizure involves a person who shakes or jerks on one side of their body, without being aware of doing so. A generalized tonic-clonic seizure (formerly called a “grand mal” seizure) involves a person shaking both arms and both legs symmetrically, without awareness. “It’s very important for the doctor to know what type of seizure you’re having, because it will help dictate what treatment options are available,” Patel says. “Certain medications are best for each condition. It’s also important for people with epilepsy, and their families, to be aware of the types. For example, if a person who normally experiences complex partial seizures has a tonic-clonic, it’s important to be able to report the change to the physician,” Patel says.
“The most important thing for people to know is that epilepsy is a treatable condition that does not have to cause significant impairment in life,” says Patel. Even today, many people mistakenly associate epilepsy with impairment. The best thing to tell others is that you have a medical condition. And, as with anyone else dealing with a controllable medical condition, there’s no need for you to be seen as different or unusual. “People with epilepsy are just like anyone else,” Patel says. “That’s something patients, families, and acquaintances need to know.”
In some instances, such as getting a driver’s license, you are required to reveal your epilepsy (laws vary from state to state as to how long you must be seizure-free before being permitted to drive). And, though legally you are not bound to disclose your medical condition, it’s wise to tell your employer about your epilepsy if safety is a factor (for example, you operate heavy machinery). But there are other reasons to be open about your epilepsy with coworkers, extended family, and friends, Patel says. Explaining your condition to others helps reduce misperceptions others have about epilepsy, and helps create a support network for you. “It’s important to let people know how to respond if you have a seizure,” he says. “The more people you involve, the more chance somebody will be able to provide help if you need it.”
First, it’s important to put yourself at ease by realizing you are a normal person with a treatable medical condition. “You are still the same person you were before the diagnosis,” says Pellock. “Why should a name make you any different?” If you project confidence, others are likely to respond the same way.
Explain to people what sort of seizures you experience and how they are being controlled. They should know how to respond if necessary—for example, by placing a pillow or soft object under your head and not trying to pin you down. Holmes sometimes videotapes patients so they can see what their seizures look like. “Once they’ve seen themselves on tape, they usually say, ‘That’s not as bad as I thought.’” And they are better able to explain the condition to other people.
While everybody feels down from time to time, there is a link between epilepsy and clinical depression, and it’s not known why. If your depression won’t go away or begins to get in the way of sleeping, eating or other daily activities, it’s important to speak with your doctor. “Don’t be afraid to use the term ‘depression,’” Holmes advises. “Not all physicians are aware of the link between epilepsy and depression.”
The good news is that depression related to epilepsy is quite similar to other forms of depression, so antidepressant medications often help. “Most of these are quite safe,” and they can be used along with epilepsy medications, Pellock says. But every patient responds differently to medications, so it’s important to work closely with your doctor to find the right mix.
Until your seizures are reliably controlled through medication, you may want to avoid situations in which you are the only adult caring for small children. This is especially important if you are experiencing tonic-clonic seizures, which can leave you feeling disoriented for up to an hour. If your seizures are under control, taking a few steps may help prevent problems. “In any situation, ask yourself, ‘What would happen if I had a seizure right now?’” Holmes advises. Change diapers on the floor rather than on a changing table, bathe children with a sponge rather than in a tub, and don’t handle hot drinks or hot food while holding a child.
Some people with epilepsy experience an “aura,” which is a kind of warning that a seizure may begin, sometimes described as a “funny feeling.” If this happens, place the child in a crib, playpen or other secure place, call a neighbor of friend, and then make sure you are safe from a fall or other dangers.
Being nervous is natural. One of the biggest fears is that stopping one drug and starting another will lead to seizures if the new medication doesn’t work. “What we do is switch gradually, starting the new medication while the patient is still on the old one,” Holmes says. So there’s never a time when you’re not getting at least one form of treatment.
Don’t let nerves prevent you from making the switch, Pellock advises. “We are fortunate that we have many choices,” he says, and your doctor may want to keep trying until you’re matched with the right medication. And don’t be afraid to suggest a new medication, even if your doctor hasn’t mentioned it. Says Pellock: “Ask your physician. Take control and become an active participant.” Finally, if you do make a switch, be sure to alert a spouse, partner or friend, asking them to be on the lookout for any changes in your behavior or moods that you may not be able to notice in yourself.
It certainly can help. Though physicians don’t yet know why, there is a clear link between lack of sleep and seizures. In fact, epilepsy specialists sometimes use sleep deprivation as way to induce seizures under controlled circumstances in patients they are diagnosing. “Getting a good night’s sleep doesn’t necessarily mean you won’t have a seizure, but it does work in your favor,” says Gregory Holmes, MD, chief of the neurology section at Dartmouth Medical School and president of the American Epilepsy Society. And sleeping on a regular schedule can be just as important as the number of hours you sleep, adds John Pellock, MD, professor and chairman of the division of child neurology at Virginia Commonwealth University.
There’s less of a clear-cut connection between lack of exercise and seizures, but the feeling among physicians is that working out regularly may help reduce their frequency, according to Dr. Holmes.
Though stress is often mentioned as a cause of seizures—and while aiming to minimize stress is always a good idea—Dr. Holmes says the connection between stress and seizures is less common than many people think. In some cases, however, stress, as well as other triggers such as flickering lights and fever, can bring on a seizure.
The reality is that you can’t avoid all potential triggers, but if you know which tend to affect you, simple precautions may help you avoid problems. Dr. Pellock tells of a young patient with photosensitive epilepsy who experienced seizures whenever she rode in a car, because of the flickering effect of sunlight passing through trees. She learned that it helped to read while riding. Your doctor can help you identify tactics that may work for you. In most cases, though, taking medication as prescribed is the best way to minimize or eliminate seizures.
Often, a matter-of-fact approach works best. If the people you tell seem concerned, it’s probably because their knowledge about epilepsy is limited. “It’s fear of the unknown that makes people worry,” says Dr. Holmes. “So explain that epilepsy is a medical condition, just like diabetes or high blood pressure, and that in most cases, it too can be controlled with medication.” If you are subject to tonic-clonic seizures, assure people that short of helping you avoid hitting your head, the best course is not to get physically involved.
Another way to make people more comfortable with your epilepsy is to remind them that many people have epilepsy and thrive. “Just about every profession has people who have had seizures,” Dr. Pellock says. “Athletes, politicians, physicians, lawyers, you name it. Alexander the Great had seizures.”
Your physician is trying hard to help, but you have every right to seek additional expertise, especially if you feel frustrated by a lack of improvement. Dr. Holmes suggests asking your physician for the location of the nearest epilepsy center. There are more than 110 such centers around the United States, each with a range of specialists focusing on specific aspects of epilepsy. “Patients should not be afraid to ask,” Dr. Holmes says. “You won’t offend your doctor. Most physicians realize these centers have a lot of individuals with expertise, from psychologists to neurosurgeons. It’s a team approach.”
“There are some people who have a single seizure and will never have another,” says Dr. Pellock. Children, in particular, sometimes simply grow out of epilepsy, though that’s less common for adults who develop the disorder. In other cases, doctors may identify a specific, localized cause for seizures—there could be a small tumor or scarring on your brain, and a surgeon may be able to fix the problem and end your seizures. For most patients, though, treating epilepsy is a matter of control rather than cure.
The good news is that most epilepsy can be treated effectively with medication. As many as 60% of medicated patients won’t have additional seizures, says Dr. Holmes, while in another 15% to 20% of cases, the frequency of seizures is significantly reduced. The key is to undergo a thorough evaluation when you are diagnosed, so you and your doctor have the tools to keep your condition under control.
Questions About Childhood Epilepsy
“Seizure types may vary with age,” Elizabeth Thiele says. “Adults are more apt to have partial complex seizures.” Partial complex seizures can result in a specific disruption of brain activity, such as head trauma, stroke, or brain tumor. Generalized seizures, however, seem to be the result of genetic disorders, and are not as common by comparison. While there are several generalized epilepsies, fewer adults have these types of seizures. In children, however, generalized epilepsies, including myoclonic seizure types and complex-partial seizures, are more common.
In 60%-80% of cases of childhood epilepsy, the child eventually outgrows his or her seizures. This means that after a period of time on medication with seizures controlled, a child can taper off the medication and remain seizure-free. The same care must go into stopping medication as went into starting it, Thiele says. Courses of epilepsy medication for children typically last 1-2 years, Thiele says. Subsequent EEG readings can help the physician determine whether a child may begin tapering off or needs another year or two. Gradual reduction in dosage should happen only in close consultation with your physician, since stopping cold could actually provoke seizures. And events in the child’s life must be considered. “You don’t taper a child off medication right when they’re heading off to college, or going away for the summer,” Thiele adds. Tapering off should be done when your child is at home in familiar surroundings.
Hormonal changes that take place in puberty may affect your child’s epilepsy—particularly in girls as they start their periods. Epilepsy may cause irregular cycles. And, as hormones surge or fade in the body, seizures may intensify or decrease, or stay the same. “It’s just a time for parents to be extra vigilant, extra aware,” Helmers says.
Just as important as the physical changes is the psychological impact. Most children going through puberty are self-conscious and fearful of being seen as “different,” so having epilepsy may feed those worries. “Support groups can be a godsend,” Helmers says. An online chat room for teens (there’s one at www.epilepsy.com) can allow your child to share experiences with the advantage of remaining anonymous. Helmers suggests encouraging children to discuss the condition with close friends. Once they have a support network, they are bound to feel less alone.
Finally, remember that overprotection may only increase their feeling of being different. Liow says, “Don’t take them out of gym class because they have one seizure a year. It’s important to make the child feel normal.”
Open communication is crucial. For example, if your child has generalized tonic-clonic seizures, every school official, from teachers to playground monitors, should know how to respond, Pellock says. Properly prepared, a teacher can be a terrific asset and advocate for your child. “If there’s a particular pattern, such as staring spells or not paying attention or becoming confused, teachers should be aware so they can tell you what’s happening.”
But it’s equally important to your child’s development and confidence that he or she not be treated differently from other students on a day-to-day basis. Holmes suggests arranging a phone call between the teacher and your child’s physician or nurse to ease any fears. Be sure to check in midway through the school year to provide any new information and to give teachers and staff a chance to update you about what they’ve observed.
“Sometimes parents will come to my office and say, ‘Johnny’s spacing out 50 times a day,’” Liow says. “But when I ask them if Johnny looks at them when they call his name, they’ll say, ‘oh, yes.’ If the child responds to your voice, it’s probably not a seizure,” Liow adds. If children do not respond to their name, they could be having a seizure, or the state could be related to the type of medication they’re taking.
Consider the time of day when these episodes usually occur. If they come at random times, they may be seizures. If they seem to arrive in patterns, particularly an hour or two after taking medication, it could mean your child needs an adjustment or a new type of medication. Your doctor can help determine the best way to proceed.