Adult Onset Epilepsy: Social, Safety-Related, And Physical Concerns

Adult onset epilepsy: Epilepsy can be a difficult disease to cope with if your children have it, but it can be equally difficult if you have grown up with a seizure disorder.

Epilepsy is one of the most common and serious neurological disorders that affects the brain. Parents of epileptic children have myriad health and psychological issues to deal with on top of the usual parenthood concerns. However, here are a few things about adult epilepsy that you might not know. When epileptic children grow up, they graduate to a whole new set of difficulties associated with independence, self-care, and functioning as a member of society.

Health Issues for the Epileptic:

Diagnosing Epilepsy

The most important thing that you can do if you suspect you have a seizure disorder is to give your doctor a detailed medical history, and report any "odd feelings" or instances where you noticeably did not feel like yourself.

Typical symptoms of adults with epilepsy may include mood swings, depression, and loss of memory (particularly short-term memory, like walking into a room to get something and forgetting what it is). More noticeable physical symptoms (specifically, outward symptoms that other people will notice) are repetitive blinking, staring, head nodding, and involuntary muscle jerks.

Drugs Commonly Used to Prevent Epileptic Seizures

Neurologists and family practice doctors commonly prescribe these drugs, listed by brand name (chemical names are in parentheses) to treat seizure patients. (Drug Information for the Health Care Professional; subsections and page numbers for each drug indication accompany the following information.) Adult medicines come in dry pill or capsule form. Medicines like Dilantin are available in syrup form for children with epilepsy. The side effects vary depending on which medication your doctor prescribes.

When you have been diagnosed with epilepsy, and when your physician initiates a regimen of medication, remember that these are powerful drugs that have to be started slowly. Your doctor will most likely give you a baseline dose, and you will gradually increase to the maximum amount of the prescribed dosage so the doctor can assess any side effects that you may experience.

For the sake of these drug descriptions and their meanings, an absence seizure shall be defined as a sudden lapse of consciousness in the victim, accompanied by a blank expression and the occasional lip-smacking. These attacks usually last for a few seconds up to a minute, there is no fall, and the victim can resume activity shortly after. The victim may not realize that they have even had such an attack. (Taber's Medical Cyclopedia, p12) Another name for these is "petit mal" seizures.

Tonic-clonic (Taber's, pp608-610) seizures involve a chronic twitching or spasms of various muscles. Typically, these are also called "grand mal" seizures.

Seizure Drugs:

Depakene (valproate)

Side effects: Upset stomach, altered bleeding time, liver toxicity, hair loss, weight gain (prevalent in women), tremor

Indications: Best when used as monotherapy (i.e., as the only medication used to treat seizures, not as one used in combination with a second anticonvulsant). Depakene is prescribed to treat simple and complex absence seizures. (Valproic Acid, Systemic; Drug Information for the Health Care Professional, pp3086-3090)

Depakote (divalproex sodium)

Side effects: Upset stomach, altered bleeding time, liver toxicity (lack of hepatic function), hair loss, weight gain (prevalent in women), tremor (typically in arms and hands), constipation

Indications: Depakote is used to treat bipolar disorder, manic depression, migraine headaches, and as a primary agent (monotherapy) for myoclonic and simple partial seizures. (Valproic Acid, Systemic; Drug Information for the Health Care Professional, pp3086-3090)

Additional note: Using Depakene and Depakote in conjunction with other seizure drugs may lead to hepatic toxicity (liver failure). It is not a good idea to start taking either of these if you already have impaired liver function.

Dilantin (phenytoin; one of the oldest anticonvulsants on the market)

Side effects: Clumsiness, insomnia, motor twitching, nausea, rash, gum overgrowth, excessive body hair growth, thickening of features

Indications: Dilantin may actually make absence seizures worse. It works better for prevention of grand mal seizures or mixed seizure patterns, and it is very effective when used in conjunction with phenobarbital and some other anticonvulsants, as long as those drugs do not have any contraindications for using them with hydantoin substances.

Phenobarbital (brand name and clinical name are the same)

Side effects: Drowsiness, irritability, hyperactivity

Indications: (American Hospital Formulary Service Drug Information [AHFS DI]; "Uses and Dosage" section for Phenobarbital; American Society of Health-System Pharmacists)

Tegretol (carbamazepine)

Side effects: Drowsiness, irritability, headache, restlessness, dizziness, and vertigo; more severe but less common are blurred or double vision.

Indications: Adults and children may take Tegretol for partial seizures, grand mal seizures, or for mixed seizure patterns. The drug does not work quite as well to treat petit mal seizures or myoclonic and akinetic seizures. Tegretol is sometimes used with other anticonvulsants such as Dilantin, phenobarbital, or primidone. (American Hospital Formulary Service Drug Information [AHFS DI]; "Uses and Dosage" section for Tegretol; American Society of Health-System Pharmacists)

Topamax (topiramate)

Side effects: drowsiness, irritability, headache, restlessness, dizziness, and vertigo

Indications: Approved by the FDA in 1999 for treating partial onset seizures in adults and children ages two and up. (Approval letter NDA 20-844, Food and Drug Administration, October 26, 1998)

Other side effects include blurred vision or double vision when combined with drugs like Celontin (classified as a succinimide substance) or hydantoin derivatives like Dilantin. Patients taking Topamax may experience a sense of mental dullness when taking any form of topiramate with phenobarbital or phenytoin. (American Hospital Formulary Service Drug Information [AHFS DI]; "Adverse Effects" section for Topiramate; American Society of Health-System Pharmacists)

Many of these substances and other anticonvulsants cause other GI (gastrointestinal) symptoms such as nausea and vomiting, indigestion, loss of taste, constipation, diarrhea, and appetite loss (anorexia is also not uncommon).

For more detailed information on these drugs, other available anticonvulsants, and their side effects, consult the American Medical Association or the Food and Drug Administration.

Ongoing Treatment of Epilepsy

Your doctor or neurologist may want to schedule visits to monitor your condition, as well as seizure frequency. One tool that they use to do this is regular blood testing. Doctors need to assess your "therapeutic level" (i.e., the level of medication that has benefits to reduce your seizures without creating toxicity in your organs, as all medications pass through your stomach, kidneys, and liver). These blood tests may include basic liver and kidney panels to make sure these organs have not been damaged as a result of the medication.


Many everyday activities that most people perform without giving it a second thought can be more hazardous to epileptic adults.

First and foremost, epileptics must overcome the obstacle of not being able to drive if their neurologist has not given them the go-ahead. According to the Epilepsy Foundation of America, epileptics are required to submit a letter of approval from their attending physician (most likely a neurologist) to their local Department of Motor Vehicles before they are allowed to obtain a license. Some states also require the epileptic driver to submit periodic reports that they are fit to drive, and to also report any seizures that they have to the DMV.

The Epilepsy Foundation also states that some neurologists are required by the state to report lapses of consciousness to the DMV; for the most part, EFA opposes this (The Answer Place; Driving). According to Dr. Gregory Berkley, a neurologist affiliated with EFA, "An aura is still a seizure." Obviously, auras can be considered a gray area.

In "Driving Safely with Epilepsy," an article published in the June 28, 1999 issue of HealthNews (Massachusetts Medical Society), epileptics must be especially careful to avoid factors that lower their threshold of control if they wish to drive. Missing a dose of medication, coping with illnesses like the flu (or any sickness that makes you faint), vomiting (which can thin the amount of medicine in your bloodstream), loss of sleep, and drinking alcoholic beverages are all contraindicated for epileptics that drive.

Epileptics who experience prolonged auras that warn them of an imminent seizure may have more luck pulling over and stopping the car before they crash. In the same issue of HealthNews, 26 percent of seizure victims with "reliable" auras still crashed because they couldn't pull over in time. What we can take from this is that there may be no such thing as a completely "reliable" aura.

Other Safety Considerations

For the epileptic, some sports are best left alone. The "Lifestyle Changes Imposed by Epilepsy" (Epilepsy Education Association, Inc.) information booklet recommends that people with epilepsy avoid sports that cause any noticeable metabolic changes in the body that could lower your seizure threshold. This may be hard for the adult athlete that thinks he or she is invincible. Scuba diving and mountainclimbing may limit the athlete's available oxygen and lead to a loss of consciousness. Sports with a high risk for head injury, or that allow for repeated blows to the head (i.e., boxing) are also contraindicated for the epileptic athlete. A few other sports described as risky for epileptics in this booklet were bungee jumping, skydiving, surfing, and hang gliding.

By the same token, jobs that involve the risk of losing consciousness or operating large and heavy equipment may not be suitable for employees with epilepsy. Some examples include flying a commercial plane or driving a diesel truck. A high-altitude occupation like skyscraper construction involves the same risks as a sport like skydiving.

Social Issues

Depression in epileptic adults is a common phenomenon. From 1975 to 1995, the prevalence of depression in adult epileptics has fluctuated from 34 to 78 percent (Journal of the American Academy of Child and Adolescent Psychiatry; Sept 1999; David W. Dunn). Along with depression, these same patients are known to have mood swings, irritability, and explosive bursts of anger. This may make it difficult for epileptics to get along with their peers, or for someone else to understand why they are behaving this way.

In light of the tendency of the epileptic person to stare and "space out", whether it is because of the medicine they are taking or their disorder itself, their peers might gather the impression that they are "not entirely there."

The labeling on most anticonvulsants (Depakote, Tegretol, and phenobarbital in particular) will tell the consumer not to mix them with alcohol. This may place a damper on the social lives of people who frequent parties or other places where alcohol is easily available or being imbibed all around them.

People who have epilepsy will do well to inform their immediate manager or supervisor of their condition, and of any medical precautions in the event that they have an attack on the job. It is wise to enter this information on job applications when you first apply in the section where it asks you if you have a disability. However, it is also wise to explain that this "disability" will not prevent you from doing the job to the best of your ability.

The choice to wear an emergency identification bracelet is up to the person with the disorder, not their employer or their physician. While it is helpful for someone to know that you are epileptic or that you are taking a certain medication when you have a seizure, only you can assess whether you want someone else to know about your condition as "matter of fact" information.

In keeping with the emphasis that we have placed on epileptics driving with discretion and increased caution (if at all), parents with epilepsy must remain resourceful if they have to get their children back and forth to school, doctor's appointments, and day care. Carpooling, transit buses, and taxis are some options; in lieu of these options, the epileptic parent may want to arrange to work from home as a means of not sacrificing their "reliability" in the workplace. Look in any classified ad in the newspaper, and you may find "Must have own transportation and clean DMV." Epileptics who have lost their license due to seizure activity will not meet these criterion.

If adolescents that have just begun to learn to drive place a lot of importance on getting a license, and on feeling like an adult because they can finally drive, then many epileptic adults have to accept that just because they cannot drive does not mean they are not grownups by the classic definition.

Helpful Foundations

The Department of Motor Vehicles (Consult them for driving regulations specific to your state).

Epilepsy Foundation of America (you may also find individual chapters of EFA for each state)

American Medical Association

Epilepsy Education Association, Inc.

The Charlie Foundation

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