Every year on March 26, people and organizations around the world band together in solidarity for Purple Day. They wear purple and host events to raise awareness about epilepsy, with the goal of ending its stigma. For Purple Day this year, we got together experts from the Mount Sinai Health System to explain what epilepsy is and answer other top questions people might have.
Is epilepsy contagious?
“You cannot spread epilepsy from one person to the other,” says pediatric neurologist Natasha Acosta Diaz, MD, Assistant Professor of Neurology at the Icahn School of Medicine at Mount Sinai.
Epilepsy is not an infection. It is a neurological condition characterized by seizures caused by abnormal brain electrical activity, says Dr. Acosta Diaz.
Is epilepsy electroencephalogram (EEG) testing painful?
In a standard EEG test, electrodes—small metal discs—are attached to the scalp with the help of a glue. The EEG test is not painful, says Anuradha Singh, MD, Director of the Epilepsy Monitoring Unit, and Professor of Neurology at Icahn Mount Sinai.
EEG tests study brain rhythms to look for any sign of irritability. A standard EEG test records these brain rhythms for 20 minutes to an hour, says Dr. Singh. “Sometimes you get a little glue left on your scalp but it’s not painful at all,” she adds.
Is epilepsy surgery dangerous?
“The myths about the danger of epilepsy surgery come from the past, from about the last 100 years or so,” says neurosurgeon Fedor Panov, MD, Director of the Adult Epilepsy Surgery Program and Associate Professor of Neurosurgery at Icahn Mount Sinai. “What you currently find on the internet (about the dangers) unfortunately is not appropriate and it just perpetuates this myth that epilepsy surgery is dangerous,” he notes.
Epilepsy surgery has its risks and benefits. “Most certainly, the benefits outweigh the risks,” says Dr. Panov. As the epilepsy care team might phrase it to patients, the risk of going through a year with epileptic seizures far outweighs the risk of a surgical intervention to cure the epilepsy, he says.
Can epilepsy seizures be triggered by flashing lights?
There is a type of epilepsy that can be triggered by flashing lights, called photosensitive epilepsy. “However, this is very rare,” says Dr. Acosta Diaz.
When testing a patient for epilepsy, flashing lights are used to see if they provoke a seizure, and if so, appropriate recommendations for care can be given, she adds.
Can people with epilepsy drive a car?
“You can drive a car if you’re seizure-free,” says Dr. Singh. However, different states can have different rules and regulations. People with epilepsy will have to check with their state’s Department of Motor Vehicles, she notes.
What are some epilepsy surgical options?
Vagal nerve stimulator
Involves placing a small wire around a nerve in the neck to decrease seizure activity. The wire is attached to a small battery inserted under the skin of the chest.
Stereotactic laser ablation
Uses lasers to remove a part of the temporal lobe of the brain to help control seizures. The procedure is guided by magnetic resonance imaging (MRI), allowing for very precise cuts and removal.
Staged craniotomy
A two-stage surgery that involves removal of part of the skull to expose the brain, followed by removal of the brain tissue that is causing the seizures. Removing the damaged part of the brain does not cause deficits, as other parts of the brain adapt and pick up function. The procedure improves the overall brain network because it allows the healthy areas to work without constant electrical interference from the seizure “hot spot.”
Responsive neurostimulation
A device is implanted that automatically records and detects electrographic seizures, then rapidly delivers electrical stimulation to suppress seizure activity. It is the first device that the U.S. Food and Drug Administration has approved for use in the brain to listen, learn, and respond to seizures.
Can people with epilepsy have a job?
“Absolutely,” says Dr. Panov. “It’s a myth to say you cannot work if you have seizures.” Epilepsy care teams are available to help patients be a part of their community, including having and holding jobs. The Americans with Disabilities Act prohibits discrimination against people with disabilities in several areas, including employment.
While it is not mandatory that people with epilepsy disclose their condition to employers or coworkers, it is recommended that someone at the workplace is aware, says Dr. Acosta Diaz. “Just in case you have a seizure, somebody can be with you or help you,” she says.
Can people with epilepsy have children?
People with epilepsy can have happy, healthy children, says Dr. Singh. Women with epilepsy should work with their OB/GYN and epileptologist to ensure they’re on the safest drugs for the pregnancy, says Dr. Singh.
Can people with epilepsy stop taking medications when seizures stop?
The goal of any Comprehensive Epilepsy Center is to get patients seizure-free, and ultimately off the medications, says Dr. Panov: “The idea is that you will come off your meds once the seizures stop.”
It is important, however, that patients do not stop taking medications without discussing with their specialists, says Dr. Singh. A lot of factors go into the consideration of stopping medications, including EEG results and MRI scans, so that process should be done in consultation with an epileptologist.
Can people with epilepsy swallow their tongue?
“No way, there’s no way that you’re going to swallow your tongue,” says Dr. Acosta Diaz. During a seizure, the tongue can go to the side of the mouth and people can accidentally bite their tongue. To assist someone with a seizure, be calm and lay the person on the side, and definitely do not put anything in the mouth, such as a spoon, she says.
Does a ketogenic diet help people with epilepsy?
It does, in certain cases, says Dr. Singh. A ketogenic diet is a high-fat, adequate-protein, and low-carbohydrate diet. It is more often used in pediatric epilepsy, especially for children in whom medications do not work well, says Dr. Acosta Diaz.
Ketosis, a state where the body derives its sources of energy from fat rather than glucose, is known to have anticonvulsant properties. However, it’s not easy for a person to enter into ketosis. That is why an epilepsy care team involves overseeing a patient’s metabolism and nutrition as well, notes Dr. Acosta Diaz. “It’s not something you can try by yourself at home. It’s not just doing a keto diet to lose weight,” she says.
Caring for people with epilepsy is a team effort. At the Mount Sinai Epilepsy Center, staff members across all levels of care work together to provide exceptional care. Here’s the Center at a glance:
100+ team members
• Adult epileptologists • Pediatric epileptologists • Neurosurgeons • Neuropsychiatrists • Neuroradiologists • Nurse practitioners • Neurosurgery • NPs and PAs • Researchers • Registered nurses • Social workers • Dietitians • Recreational therapists • EEG technicians • Administrative staff
Designated as a Level 4 medical facility by the National Association of Epilepsy Centers (NAEC), which is the highest recognition of care and expertise for people with epilepsy
Three inpatient Level 4 epilepsy centers at The Mount Sinai Hospital, Mount Sinai Kravis Children’s Hospital, and Mount Sinai West, and six outpatient locations in New York City and Long Island.
ABRET-certified labs
Five Mount Sinai sites have received American Board of Registration of Electroencephalographic and Evoked Potential Technologists (ABRET) Lab accreditation for achieving highest levels of quality and competence performing neurodiagnostic tests.
In 2023
The Mount Sinai Health System performed more than 13,000 electroencephalograms and completed 100 surgeries to reduce or eliminate seizures for adult and pediatric patients.
To call the Mount Sinai Epilepsy Center
212-241-2627
In addition to treating patients with epilepsy, the Mount Sinai Health System and Icahn Mount Sinai conduct research to push the frontiers of understanding the neurological conditions and what is possible with treatment. Here are some examples of what Mount Sinai is doing to further science in epilepsy.
Clinical trial: Epilepsy associated with Lennox-Gastaut syndrome
Lennox-Gastaut syndrome (LGS) is a severe form of epilepsy, with seizures beginning in early childhood. To treat seizures that have not been well controlled through conventional medication, researchers are using novel responsive neurostimulation (RNS) strategies. This is the first clinical trial using RNS for LGS.
The trial is supported by a five-year grant from the National Institutes of Health, and conducted in collaboration with five other centers in the United States.
Click here for more info.
Clinical trial: Efficacy of subanesthetic doses of IV ketamine for treatment-resistant epilepsy
Ketamine is an anesthetic that provides pain relief, and came into clinical use in the 1960s. In a hospital setting, ketamine is used intravenously at anesthetic doses to treat unrelenting seizures known as status epilepticus in comatose patients. Mount Sinai researchers are exploring using ketamine at subanesthetic doses in an outpatient setting for patients who have treatment-resistant epilepsy. With subanesthestic dose-ketamine recently approved by the FDA for treatment-resistant depression, researchers are optimistic about its safety, and are hopeful that this will provide relief for patients with hard-to-treat epilepsy as well.
Click here for more info.
Clinical trial: Phase 3 trial for a once-daily, oral treatment for those living with focal seizures (XTOLE2)
Focal seizures are when brain cells on one side of the brain malfunction, causing symptoms, and are considered the most common type—making up more than half of all seizures. Symptoms could include one or more of the following: motor, sensory, autonomic, or cognitive. While treatment can stop or reduce the frequency of the seizures, for some patients, current treatment options may be insufficient. Mount Sinai is participating in a Phase 3 study with Xenon Pharmaceuticals to explore the use of XEN1101, a potassium channel opener, along with the patient’s existing medication, for focal seizures. Clinical data from previous trials have shown up to around 50 percent reduction in focal seizures among participants who have received the drug.
Click here for more info.
Clinical trial: Phase 3 trial for Staccato® Alprazolam in participants 12 years and older with stereotypical prolonged seizures
Benzodiazepines are more commonly known for treating anxiety or panic disorders, but they can also be used to terminate most seizures in an inpatient setting. Approved therapies include a rectally-administered gel and intranasal formulations. However, there are no approved treatments for rapidly terminating an ongoing seizure in an outpatient setting. Mount Sinai is participating in a Phase 3 trial with pharmaceutical company UCB to study the effectiveness and safety of Staccato® Alprazolam, a breath-triggered device that delivers the benzodiazepine deep into the lung for rapid absorption and systemic exposure, with the goal of achieving rapid epileptic seizure termination (REST). In a previous clinical trial, in an inpatient setting, nearly 66 percent of participants who received the drug responded to the treatment, compared to 43 percent of participants who received a placebo. For participants who responded to the intervention, the Staccato® Alprazolam group saw seizure cessation in a median time of 30 seconds, compared to 60 seconds for those who had received a placebo. The Phase 3 trial tests the treatment in an outpatient setting.
Click here for more info.
Clinical trial: Electrographic seizure pattern modulation biomarkers in responsive neurostimulation for epilepsy
Although the therapeutic benefit of RNS is well established, predicting how well and when a patient might respond to the device is difficult. It may take several months for a patient to report a reliable change in seizure status, during which time the programming clinician has no objective guidance regarding whether or not to adjust settings. RNS devices can provide EEG recordings, offering an insight to seizure patterns, but there is little knowledge about how to use these recordings in individual patients. Thus, a critical need exists to develop methods for using a patient’s own data to predict when seizure reduction should be expected or to confirm objectively the presence and maintenance of a clinical response.
Icahn Mount Sinai researchers are working with Massachusetts General Hospital to apply machine learning, neurostatistics, and data science to improve the effectiveness of RNS, especially for children and adults who are not considered suitable surgical candidates.
Click here for more info.
Laboratory for Human Neurophysiology
The Laboratory for Human Neurophysiology seeks to understand how human cognition arises from the interaction of multiple brain areas and neurotransmitter systems, particularly in decision-making behavior. These research efforts involve studying prefrontal cortical and subcortical areas directly in the human brain by conducting intracranial electrophysiology recordings in patients undergoing neurosurgical treatment.
Ongoing research projects in the laboratory include investigating the neural basis of human decision-making under uncertainty using distributed intracranial EEG recordings in epilepsy patients, decoding overt subject behavior from preceding, distributed brain activity in reward-related brain regions, and studying reward and mood processing across multiple brain areas in epilepsy patients with and without comorbid depression. The lab is led by Ignacio Saez, PhD, Associate Professor of Neuroscience, Neurosurgery, and Neurology at Icahn Mount Sinai.
Click here to read more about the lab.