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Q: Do I really have epilepsy?
A: The term epilepsy means that you have had more than one seizure on more than one occasion. Seizures can be difficult to diagnose because they donít usually occur in the presence of your doctor. Even then, it is difficult to be certain of what is occurring in your brain without the use of the appropriate diagnostic tools. Seizures can often be confused with other medical conditions such as disturbances in the rhythm of the heartbeat, certain types of sleep disorders, panic attacks, breath-holding spells in children, psychogenic seizures due to certain psychological problems and numerous other conditions. Be sure that your physician has reached a firm diagnosis and can confirm it with the appropriate tests.
Q: What is the cause of my seizures?
A: There are many causes of seizures. For example, heredity, birth defects, traumatic brain injury, infection and tumors are just a few of the causes of epilepsy. Your physician may decide to treat the seizures differently depending upon the cause. For example, seizures caused by a brain tumor are best treated by removing the tumor with epilepsy surgery if possible, but if your epilepsy is caused by a childhood infection, chances are you will be treated with antiepileptic medicine. In many cases however, a precise cause cannot be found.
Q: Will I outgrow my seizures?
A: Certain seizure types appear only during certain parts of the life cycle. If you are one of the few patients with such a seizure syndrome, you may in that case, outgrow your seizures once you reach adulthood.
Q: Will I need to take antiepileptic medicine for the rest of my life?
A: This is an individual decision between you and your physician based on the cause of your seizures, your genetic make-up and the risk you run of having another seizure. Often, you will need the most expert opinion in making this decision.
Q: How can I possibly manage my own epilepsy?
A: Think of yourself as the captain of your epilepsy treatment team. You will need expert help in reaching an accurate diagnosis and in sorting through the appropriate treatment options, but only you can be responsible for adhering to your treatment plan and providing clear information to the other members of your team. Self-management means that you know your epilepsy seizure type, your epilepsy syndrome, and have a clear understanding of your treatment plan. The details of your plan may include dosing of the medicine, the time of day when medicine should be taken, what diagnostic tests have been done and will need to be done, when will you next be evaluated, and whether or not you are a candidate for epilepsy surgery.
Q: What is an epileptologist?
A: Physicians come with varying degrees of training. A primary care doctor (family practice, pediatrician, internal medicine) specializes in treating the patient as a whole, looking at all of your medical problems and following them over a long period of time. A patient may need to see a specialist such as a neurologist or an orthopedist. These doctors have taken additional training within a specific disease group. For example, a general neurologist, takes four years of residency (including the one year of general medicine) and treats epilepsy, stroke, headache, back pain, infections of the central nervous system, muscle weakness, peripheral nerve injuries, and others. An epileptologist is a general neurologist who has taken an additional two years of seizure training and subspecializes in seizure disorders.
Q: How many seizures are too many?
A: Even one seizure can cause a lot of trouble for a person. The aim of treatment is no seizures and no side effects. With proper help, most patients can achieve this.
Q: Do seizures cause brain damage?
A: There is increasing scientific evidence that even relatively small seizures can affect the long-term health of the brain. For this reason, the modern treatment of epilepsy emphasizes no seizures and no side effects.
Q: If I have intractable epilepsy, what can be done to help me?
A: Very few patients have truly intractable epilepsy. Patients with intractable epilepsy usually have severe brain damage or other problems in brain development. If your seizures have not responded to the treatment youíve received so far, it may be worthwhile seeking a second opinion or care at a specialized epilepsy center - you may not be intractable after all.
Q: When should I be concerned about side effects from my or my childís antiepileptic medication?
A: If you donít feel well when taking antiepileptic medications, talk to your doctor. If your doctor cannot control your seizures without unacceptable side effects, seek a second opinion.
Q: When should I seek a second opinion?
A: Ordinary cases of epilepsy respond to ordinary doses or ordinary medicines. If your seizures have not been brought under control, either the diagnosis is wrong, the treatment is wrong, or there is some problem in carrying out the treatment. If you see a family doctor, and you are continuing to have seizures, you should certainly ask for another opinion after three months. If you are seeing a neurologist, and the seizures have not been brought under control after 9 to 12 months, then you should insist upon another opinion at a specialized epilepsy center with an epileptologist.
Q: Should I seek specialized care if I am a woman with epilepsy and am of childbearing age?
A: Women with epilepsy and their physicians need to pay special attention to birth control, pregnancy planning, management through pregnancy and delivery, and avoidance of birth defects. If your doctor is not accustomed to treating women with epilepsy of childbearing age or pregnant, request a referral to someone who is.
Q: Am I a candidate for epilepsy surgery and, if so, when should I consider it?
A: Only an epileptologist experienced in evaluating patients for epilepsy surgery can make that judgment. In very general terms, if you have failed two major antiepileptic medications, it is time to consider that question with an appropriately qualified expert.
Q: Who is a candidate for the vagus nerve stimulator (VNS)?
A: If an epileptologist experienced in epilepsy surgery has determined that you are not an appropriate candidate for epilepsy surgery, and if antiepileptic medications have not brought you under control, ask your epileptologist about the pros and cons of the VNS for your particular case.
Q: Do I need a referral to see an epilepsy specialist?
A: In general, no, you do not need a referral. However, most epilepsy centers prefer to see patients referred by primary care doctors. If you seek out an epilepsy center on your own, in general you will be welcome, but the epilepsy center will want to work with a primary care doctor or neurologist to be sure that the appropriate team cares for you.