By Ernst Lamothe Jr.
Epilepsy is one of the most common neurological diseases. It’s also one of the most unknown and stigmatized.
One in 26 people will be diagnosed with epilepsy and around 3% of the United States population has an active epilepsy diagnosis, according to the Centers for Disease Control and Prevention. This is more than multiple sclerosis, cerebral palsy and Parkinson’s disease combined.
“The impact that epilepsy can have on a person’s life ranges from mildly inconvenienced to devastating,” said Michael Radell, education coordinator and camp director for Epilepsy Alliance of West Central NY, the epilepsy services division of Empowering People’s Independence. “And often that impact has nothing to do with the person’s actual seizures, but rather other people’s perceptions about what epilepsy is and isn’t.”
A primary focus of the Epilepsy Alliance is to increase awareness of epilepsy and dispel the common myths and stigmas surrounding this condition.
Here are the five most important things to know about epilepsy.
1. What is epilepsy?
Epilepsy is generally defined as two or more seizures with no known cause. Seizures are excessive electrical activity in the brain that alters a person’s movement, sensations, behavior or awareness. Seizures are quite common, one 1 in 10 people will experience a seizure during their lifetime, and they are often caused by fevers, brain tumors, brain injuries and drug interactions. A person is diagnosed with epilepsy when their doctor determines that a person has had two seizures, greater than 24 hours apart, which cannot be traced back to a known cause and they are at risk for having future seizures.
“People equate epilepsy with having lower intelligence or someone not being able to take care of themselves and that is simply incorrect,” said Radell.
Epilepsy is not a mental disorder, is not contagious and is not an indication of intelligence.
2. What are seizures?
There are many different types of seizures.
“The most well-known seizure is called a tonic-clonic. It was formerly known as a grand mal seizure and is the one most often depicted on TV and in movies,” said Radell.
During this type of seizure, all of one’s muscles stiffen, then air in the vocal cords causes a cry or groan, the person loses consciousness, falls to the floor and has rhythmic jerking of their limbs.
Two other common seizure types are absence seizures, which are brief episodes of staring spells and myoclonic seizures, which are brief, shock-like jerks of a muscle or a group of muscles. They typically pass in a few seconds or minutes. There can be just one, but sometimes many will occur within a short time.
With atonic seizures, muscles suddenly become limp, the eyelids may droop and the head may nod or drop forward.
Seizures can occur either when you’re awake or asleep. Seizures can occur randomly and often without warning. Sometimes a seizure can be triggered by things, such as sleep deprivation, illness, flashing bright lights, alcohol or drug use, stress, poor diet or missed dose of anti-seizure medication.
There are many treatments available for epilepsy today and the good news is that 70% of people with epilepsy have good seizure control with minimal side effects. The most common treatment is medication. Other treatments include implantable devices that help regulate the brain’s electrical discharges (kind of like a pacemaker for the brain); brain surgery for those whose seizures can be traced back to a single origin point; and dietary therapies.
Unfortunately, 30% have what doctors call intractable epilepsy, which means that today’s treatments are not effective in controlling their seizures and there is no cure, making epilepsy a life-long chronic condition.
“Despite the challenges, there are plenty of people working and living full lives with epilepsy. You can live a quality life with epilepsy,” Radell emphasized.
4. First aid
If you see someone having a seizure, the most important thing to remember is to keep them safe. The Epilepsy Alliance uses the acronym T.R.U.S.T. to teach seizure first aid for generalized tonic-clonic seizures.
T – Turn the person on their side. This will keep their airway clear. NEVER put anything in their mouth.
R – Remove objects such as masks, glasses, scarves, anything that can hurt or get tangled with the person, or environmental hazards such as tables and chairs.
U – Use something soft under their head: a pillow, rolled up jacket or sweatshirt
S – Stay calm and stay with the person. Remain with the person until they are fully aware of surroundings.
T – Time the seizure.
For other types of seizures where the person is unaware, but remains upright and even might be walking around, keep the person safe by removing things in their path or gently redirecting them away from hazards.
Never try to control or restrain a person and never put anything in their mouth.
“For most people with well-controlled epilepsy, having a seizure is not a medical emergency,” Radell explained. “However, you should always call 911 if a person is having a seizure for the first time, a seizure lasts more than five minutes, a person is having back-to-back seizures or a person has a new type of seizure.”
5. Seeking help
Due to the complex nature of epilepsy and seizures, Radell encourages anyone who has had an unprovoked seizure to talk with their doctor and see a neurologist.
Radell also recommends scheduling an epilepsy education session or attending one of their monthly webinars with epilepsy medical experts.
“Having up-to-date information about epilepsy as well as critical seizure first aid training can be life-saving,” Radell said. “We provide tailored programs for families, day cares, schools and workplaces.”
Radell also runs camps for children with the condition. He believes it is essential to connect kids with others experiencing seizures.
“When you see other people who are like you and you share a common bond, it is uplifting. It is also a chance just to talk with others who have the same challenges, connect in fun ways and learn from each other,” he added.