Life with Epilepsy

Having epilepsy or having a child with epilepsy can involve many challenges—from the frequency and intensity of seizures to the side effects of medications—that add significant stress to daily life. At Mount Sinai we understand these issues are very important, and we work closely with our patients and caregivers to address them.

Safety and Epilepsy

Sometimes a person will get a warning that a seizure is coming. When this happens, it is important to lie down or sit down quickly and if possible to call for help. If you are with someone having a seizure, the most important thing is to stay with the person and keep them safe.

A few safety tips include:

  • Removing any sharp objects
  • Not restraining the person, and not putting anything in their mouth
  • Timing the seizure from beginning to end
  • Rolling the person onto their side, if possible, so any drool or blood in the mouth will drain out
  • If a seizure occurs in public, encouraging bystanders to give the person space, as coming to awareness after a seizure can be confusing and embarrassing

Call 9-1-1 if a seizure lasts five minutes or longer, if one seizure occurs right after another, if the person appears to be choking or having breathing difficulties, or if the person has been injured.

Sudden Unexpected Death in Epilepsy (SUDEP) 

Sudden unexpected death in epilepsy (SUDEP) affects about 1 in 3,000 people with epilepsy each year. There is higher risk of SUDEP in patients who have difficult-to-treat seizures, especially those who have frequent generalized tonic-clonic seizures. The cause of SUDEP is not clear, but leading theories include irregular heart rate, poor respiration, or brain “shut down” associated with seizures. SUDEP is best prevented by good seizure control (taking medications as directed) and close supervision.

Driving and Epilepsy  

Restricted driving is one of the most difficult aspects of having epilepsy. Every state has different guidelines regarding epilepsy and driving, and it is the role of your physician to inform you about these guidelines. In New York State, physicians are not required to report a seizure incident to the Department of Motor Vehicles (DMV). However, individuals with epilepsy are expected to provide that information to the DMV. Driving is then restricted until 12 months after the last seizure with impaired awareness. Under some circumstances, the DMV will reinstate a person’s license sooner than 12 months. No physician in the United States has the authority to tell a patient that he or she may drive, as this decision is made by each state’s driving authority.

Mood and Epilepsy

Epilepsy and mood difficulties are closely related. In fact, depression is an independent risk factor for developing epilepsy. The rates of anxiety and depression are much higher in people with epilepsy than in the general population. Some anti-seizure medications can make these feelings worse and some have the potential to make them better. We don’t consider our work a success if seizures are controlled but a person is feeling very anxious and unhappy. For mood difficulties, the first step is to make sure that the anti-seizure medication isn’t worsening the problem. After that, a multitude of interventions can be considered, including therapy, exercise, medication, and social connection.

Sometimes after seizures, people can behave violently or lose inhibitions and behave inappropriately. Some people can experience depression or psychosis, which can last days after the seizure. It is important to discuss these topics with your doctor, as there are treatment strategies that can be very helpful.

Stigma and Epilepsy

Due to their often dramatic nature, seizures have been associated with demonic possessions or evil spirits. But epilepsy is a medical illness like any other. However, people with the disorder can still encounter uncomfortable stigmas, and the best way to fight stigma is through education. If a patient or family member would like us to educate teachers, staff, or co-workers, we will gladly go into a school or work place to provide this service.

People with epilepsy have achieved great things: Renowned writer Fyodor Dostoyevsky suffered from temporal lobe epilepsy. President Theodore Roosevelt, who famously said, “Courage is not having the strength to go on; it is going on when you don’t have the strength,” had epilepsy as well. Neil Young and Lil Wayne are two accomplished musicians with epilepsy.

Download this simple and clear Seizure tip sheet to help you learn what and what not to do when someone is having a seizure.