If you have epilepsy, you likely have questions and concerns. The following are answers to some of the most frequently asked questions from patients like you.
If I have epilepsy, what should I do?
Seek out care from someone who specializes in epilepsy and seizure care. Epilepsy is typically a lifelong condition often associated with other illnesses. You are likely to benefit from a team approach that will comprehensively take care of you. Depending on the severity of the condition, different levels of care are often needed. Given the potential impact of having ongoing seizures on one's health and quality of life, it is important to gain an appropriate understanding of the different options available to better manage your condition. There have been many new investigative tools and therapies that have emerged and continue to emerge that can potentially benefit you. It should be understood that the goal of treatment is no seizures and no side effects from the therapy. That goal may be difficult to achieve, but you should strive for it. The earlier there is clarification about the risks and benefits of different options available, as well the risks of ongoing seizures, the greater the possibility of having a more significant impact on the health and quality of life.
What is a seizure?
A seizure is abnormal electrical activity of the brain that is associated with a change in behavior, experience, or both. It occurs when enough brain cells (neurons) get abnormally activated all at once. A seizure typically lasts 20 to180 seconds or so, but may be longer or shorter. Seizures are usually unpredictable in their timing, but there may be situations where the probability of seizure occurrence can be higher than at other times (such as alcohol use, lack of sleep or stopping anti-epileptic drug therapy). Usually, seizures stop by themselves with a gradual return of awareness, with the length of time depending on the severity of the seizure. If a seizure does not stop by itself after about five minutes, then an emergency medical service should be called.
What causes seizures?
That is a difficult question to answer. All we know is that there are certain conditions or injuries that are likely to increase the chances that a person will develop seizures. Genetics play a role in susceptibility, but the exact nature of this impact is not clear. Broadly speaking, any condition either developmental (namely, genetic predisposition or some insult to the brain before it is fully mature) or acquired that affects the brain directly or indirectly can result in a seizure. Therefore, there are many conditions that are associated with epilepsy (such as stroke, brain tumors, vascular malformations, cortical malformations, head injuries and infections, as well as many others). Therefore, seizures can often be the first sign that there is some other underlying condition that is affecting the brain; that is why it is essential that a comprehensive evaluation be performed by a doctor who has expertise in helping persons with epilepsy, also called an epileptologist.
Once I take my medicines, will my seizures be cured?
While anti-epileptic drugs (AED) lower the probability of having a seizure, it does not guarantee it. Approximately 50 percent of people with epilepsy will have their seizures under full control with the first appropriate AED that is tried and another 15 to 25 percent will also have full control with a second appropriate AED. However, there is about a one-third to one-fourth chance that a person will not achieve full seizure control with AED therapy, no matter which combination of drugs are tried. This condition, where seizures keep happening no matter what medication is tried, is called "medically refractory" epilepsy. People diagnosed with medically refractory epilepsy should seek a surgical consultation, because in some circumstances surgery can result in full seizure control. As epilepsy is a very variable disease and different individuals have their unique circumstances, the actual probabilities vary depend on the specific situation.
Can I stop taking my medications once my seizures are under control?
Anti-epileptic drug (AED) therapy is lifelong therapy until stated otherwise. If one "outgrows" a seizure disorder, then — under careful supervision of a doctor who has expertise in treating epilepsy — reduction of medications can be done as a gradual process with a wait-and-watch approach to determine whether seizures recur. Certain tests can help determine if the risk of seizures still exists and it would be unwise to reduce or stop AEDs. In a way, AEDs are like blood pressure medications — for example, if your blood pressure is "normal" when you are taking your blood pressure pills, it does not mean it will be normal if you suddenly stop them. On the other hand, AEDs are not like antibiotics in that seizures don’t go away after taking a course of medications. Often, the main role of AEDs is to reduce the spread of seizures, and by doing so, AEDs reduce seizure frequency AND seizure severity.
Can I drive if I have epilepsy?
As long as your seizures are not fully controlled, there is a rule of thumb that you should follow — do not participate in any activity that exposes you or someone else to a risk of significant injury if you were to have a spell (that is, a seizure or event). Driving requires you to have full control of your mental, sensory and motor faculties in order for you to do it safely, therefore you should not drive, regardless of whether or not you have been told that you cannot. You have to use your common sense. Restriction of driving can have often have a significant impact on one's work and personal life, but the consequences of having a seizure while driving can be fatal — to you and to others. Once it is determined by a physician who is treating you for your seizures that your seizures are controlled, and then restrictions on your activities can be reduced or removed.
It is important to understand that just because you have started taking AED therapy after onset of your seizures, it does not mean that you can drive. There has to be a certain period of time (up to a year in some states by law or regulation) while you are on your therapy to determine if it is actually able to control your seizures. That will often depend on how often you have seizures before starting therapy. The less frequent your seizures, the longer it will take to determine if any intervention has had any impact on them. Therefore, there is an element of judgment involved before determining whether an individual can drive or not after having a single seizure in their life or if he/she has been determined to have epilepsy.