Over two million Americans are currently living with epilepsy — including celebrity musicians Lil Wayne, Neil Young, and Prince. “There are many causes of epilepsy, which is an enduring predisposition to having a seizure,” says Marcuse. “Seizures are caused by abnormal electrical activity of the brain, which can cause the typical seizure with falling down, shaking and foaming at the mouth. Or a seizure can manifest as a feeling of fear, ringing in the ears, or even a sense of deja vu.” Doctors estimate that fully 1% of the general public has epilepsy, and some people may not know it.
A small seizure with a feeling of fear can be misdiagnosed as a panic attack. “One way to tell the difference is that panic attacks last for over 15 minutes, whereas small seizures tend to be very brief, just a few seconds to a minute,” says Marcuse. “Sometimes, once patients have their first big seizure, they realize they’ve been having small seizures for years, they just didn’t recognize them as such.” The type of seizure you have depends on where in the brain it originates.
Some but not all cases of epilepsy are due to a genetic cause. “Rarely the genetics are straightforward, and the patient gets it from one of his parents,” says Marcuse. “Other times, the genetics are more complicated, so you might not see many cases in the immediate family.” Any type of brain lesion can also cause epilepsy, including traumatic brain injury, stroke, and brain tumors. And in most cases, doctors still don’t know what causes an individual patient’s epilepsy.
People from all walks of life are affected by epilepsy. “It’s a pretty egalitarian perpetrator — everyone can get epilepsy, and men and women are nearly equally affected,” says Marcuse. “It exists in every culture and has since ancient times.”
The onset of epilepsy can fall anywhere in the lifespan. “There are two peaks when most people begin to develop symptoms for the first time — either as newborns or children, or later in life, over age 60,” says Marcuse. “Most of the time, epilepsy is treatable and patients can have the same quality of life as anyone else; however, in some cases it can be fatal. A woman recently had an epileptic seizure in her jail cell in Brooklyn, and she died from it.”
SIGNS AND SYMPTOMS
Patients can experience a whole range of seizures, from mild to severe, depending on whether part of all of the brain is affected. “The biggest type of seizures, called generalized tonic-clonic seizures, start on both sides of the brain and are dramatic — individuals lose awareness, stiffen, fall down, shake all over, might bite their tongue, or urinate on themselves,” says Marcuse. “Afterwards, people report that their muscles are sore and that they feel confused.” Sometimes these seizures happen at night, and the individual might not realize that it has happened.
Partial seizures — which affect only part of the brain — can cause of a number of symptoms depending on which part of the brain is affected.
“A partial seizure can take the form of a feeling, like deja vu, or a movement, like the jerking of the hand or jaw,” says Marcuse. “If a partial seizure spreads, the individual will lose awareness but the eyes usually remain open and the individual may engage in bizarre behavior, likely picking movements and strange chewing motions. Finally if the partial seizure spreads further, it can lead to a generalized tonic clonic seizure.” If you’re having some type of experience that you’re not sure what to make of, it’s reasonable to consult a neurologist.
The first step toward getting the right treatment entails a comprehensive gathering of information. “One of the most important elements of making the diagnosis of epilepsy is for the doctor to talk to the patient, take a history, and also to talk to other people who have witnessed the events,” says Marcuse. “The next step is to get an image of the brain, usually an MRI, and to record the brain waves using a painless technique called EEG.”
Most patients will opt for treatment once they have had two seizures, at which point the chance of having a third is very high. “Generally we start with medication, and we have over 20 FDA approved drugs,” says Marcuse. “Not every medication works for every person, and some people have side effects — these medicines work on the brain so they can have strong side effects. We need to be very active in responding to what a given individual is feeling.”
The goal of epilepsy treatment is not just to control the seizures. “If the patient isn’t feeling well on a medication, even if she isn’t getting seizures, that’s not successful,” says Marcuse. “The goal is to stop seizures and promote a high quality of life.”
About 30% of patients are not fully controlled with medications. “These patients require a lot of attention and should considered for other treatment options, including epilepsy surgery, which entails removing the part of the brain that causes the seizures,” says Marcuse. “This can be incredibly effective, but not available to some patients, because some parts of the brain can’t be removed.”
Panic attacks last for over 15 minutes, whereas small seizures tend to be very brief, just a few seconds to a minute.
Another option is a newly approved device called responsive neuro-stimulation. “This device can actually sense the seizure beginning and stimulate the affected area of the brain to stop the seizure from happening,” says Marcuse. “The ketogenic diet, a high-fat, low-carbohydrate diet, can be very effective. Some people add complimentary techniques to their treatment like yoga, meditation or biofeedback.”
Epilepsy research is booming. “There are many new ideas on the horizon,” says Marcuse. “including the possibility of implanting neurons (brain cells) that can be used to calm the brain and inhibit seizure activity.”
Questions for your doctor
Because there are so many different treatment options, it’s all the more important to be a proactive patient. Every patient should ask the doctor, “Why are you advising this medication for me?” and “What are your goals of care?” If you are a woman in your childbearing years, ask, “How is epilepsy and the medication affecting my hormones and the possibility of becoming pregnant? If I become pregnant, what are the possible effects of the medication?” “If you have epilepsy, and you’re not satisfied either with the level of control you have or how you feel on the meds, seek out a fresh approach,” says Marcuse. “It’s important to be hopeful, because there are so many new options, and your doctor should work with you to have a good life by any means possible — medications, surgery, lifestyle, and complementary techniques should all be discussed.”
WHAT YOU CAN DO
Two digital sources you can trust are the Epilepsy Foundation (epilepsy.com/) and Mount Sinai (mountsinai.org/patient-care/service-areas/neurology/areas-of-care/epilepsy-center).
Know what to do — and not to do — as a bystander.
If you see someone having a seizure on the subway, don’t put something in their mouth. “They can choke on it, and it doesn’t help with the tongue biting,” says Marcuse. “Instead, look for a medic alert bracelet, try to get sharp objects out of the environment, and once their body is loose, roll them on their side. And call 911.”
“This is a really common disorder, and unfortunately, it still carries significant stigma,” says Marcuse. “It’s frightening to watch someone have a seizure, and in the past it was often thought of as being possessed by the devil. But it’s just a chronic medical condition like any other.”
Don’t avoid the topic.
If you know someone with epilepsy, ask if there is anything they might need from you.
Source: NY Daily News
By director of the Mount Sinai Epilepsy Center, Dr. Lara Marcuse oversees the care of thousands of patients with epilepsy. November is Epilepsy Awareness Month.