Many things about epilepsy are misunderstood, despite widespread access to information from the internet. Often, online information is anecdotal or isn’t evaluated critically, which can create unnecessary anxiety and stress for people living with the condition. And for everyone else, it can contribute to persisting stigma surrounding the condition.
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Here are some of the things I tell my patients and their families to help reassure them.
Anyone Can Develop Epilepsy. Epilepsy doesn’t discriminate by age, race, sex, or geography. It may be more or less common than you think, depending on your perspective. Just after a diagnosis you may feel terribly alone but you are not: About 3.4 million Americans have epilepsy, including about 3 million adults and about 470,000 children. That’s about 1.2 percent of the United States population.
You Can Prevent Events that Can Lead to Epilepsy. For example, you can avoid possible traumatic brain injury by wearing a seatbelt and using a vehicle with airbags. You can also wear a helmet when you bike, set up your house or environment to prevent falls (especially important for elderly people), eat a healthy diet, and exercise (to prevent stroke and heart disease), and stay up to date on vaccinations to prevent infections that can lead to epilepsy.
Epilepsy Doesn’t Usually Affect Cognition. While some types of epilepsy are accompanied by intellectual disabilities, especially rare forms that occur in childhood such as Dravet and Lennox-Gastaut syndrome, the disease doesn’t typically diminish intelligence. Taking active steps to control seizures quickly can help protect cognition. And although care must be taken to avoid side effects from anti-seizure medications, they typically don’t affect IQ.
Not All Seizures Are Alike. When most people imagine seizures they picture someone convulsing, drooling, biting his or her tongue, and being out of it. While this is characteristic of generalized tonic clonic (formerly called grand mal) seizures, other types of seizures may appear very different.
Some seizures may not cause any impairment of awareness, and the person experiencing the seizure may be able to describe exactly what is happening to him or her. Other seizures may cause impaired awareness but no fall or convulsion. The period of impaired awareness or staring may be as short as a few seconds, with a rapid return to normal, or could last for one to several minutes, with a period of disorientation and confusion following the seizure.
The seizures that you are used to seeing in your cousin, for example, may look very different from those you might see in someone at the grocery store or in your coworker.
Treatment Is Very Individualized. There is no one-size-fits-all treatment or single magic pill for epilepsy. Finding the right medication and dose or treatment is an ongoing collaboration between me and my patients. We may try one medication that we think has the best chance of stopping seizures and not causing side effects, but we have to be prepared to change course if the medication is ineffective or the side effects intolerable. If medications are ineffective, we may also consider using medical devices, special diets, surgery, or other approaches. My patients and I don’t give up until we find just the right formula.
You Can Manage Your Epilepsy. Patients are not helpless in the face of this condition. The goal is to get the best seizure control possible, while addressing any other obstacles that may arise, such as managing depression or navigating accommodations in the workplace.
Taking charge of your condition means getting adequate sleep, following a healthy diet, limiting alcohol, and being vigilant about not missing doses of medication—all of which help reduce the risk of a seizure.
Dr. David Spencer is a Fellow of the American Academy of Neurology and American Epilepsy Society, and Professor of Neurology at Oregon Health & Science University in Portland. He has been treating epilepsy patients for nearly 20 years.
