Epilepsy: What is it and How Those with it Cope
What is it exactly, how is it diagnosed, and how does it affect those who have it?
Rhea Hansen had her first seizure in her early 20s. It was a grand mal – where the body loses consciousness and violently shakes. The Lakeland resident was diagnosed with epilepsy after having multiple seizures and eventually had a vagus nerve stimulator implanted, which has helped control them.
“There are a lot of neurological disorders and people have misconceptions of them,” says the 42-year-old teacher. “I can lead a very successful, normal life. I just have to make adjustments.”
Epilepsy is the fourth most common neurological problem and 65 million people in the world have it, according to the Epilepsy Foundation. November is Epilepsy Awareness Month and there is currently no cure for the disease.
Seizures are caused by abnormal electrical activity in the brain, but not everyone who has a seizure has epilepsy. Epilepsy is diagnosed when the patient has had two or more seizures. There are some misconceptions about epilepsy, says Dr. Daynet Vega, an epilepsy specialist at Watson Clinic. Those misconceptions are: Epilepsy is not contagious, it doesn’t affect your intelligence, people affected can still work in high-functioning positions, and people can’t swallow their tongues.
Vega offers advice for onlookers who are witness to someone having a seizure, the first being to be sure they are safe, secure their head and position them safely on the floor.
“Don’t try to hold or constrict them,” she says, “but make sure they are not going to injure themselves.” If a seizure continues for more than five minutes or the person has multiples, then it may be time to call 911.
There are several types of seizures ranging from staring episodes, shaking on one side, to grand mal. Also, there are many different types of medications to help treat epilepsy.
“Meds usually control seizures in 60 to 70 percent of patients,” Vega says. Hansen had to try several medications before finding one that helped control her epilepsy. Her last seizure was in 2012.
If medication isn’t enough, sometimes doctors recommend surgery if they find a spot on the brain that may be causing the seizures. To be a candidate for surgery, the patient has to have tried at least three medications, says Vega. “Most epileptics have a genetic predisposition and have some kind of brain abnormality. Many develop seizures when they are young or in their teens or 20s. We don’t know what triggers the gene to change.”
According to the Epilepsy Foundation, one in 26 people in the U.S. will develop epilepsy at some point in their lifetime and there are 150,000 new cases in the U.S. each year.
Florida Epilepsy Services has offices in Lakeland and Tampa providing help for families in Polk, Hardee, Highlands and Hillsborough counties. Dan Grant, executive director, says they see about 200 people per year in the Lakeland office and offer counseling, financial assistance and training. To be eligible for help, the person must have a diagnosis or suspicion of epilepsy and live in one of the four counties.
“It’s a very serious disorder, there is no cure and you essentially have it for a lifetime,” Grant says. “Our goal is to help a person get better control of their seizures and improve the quality of their life. We also want to increase awareness and decrease unnecessary visits to the emergency room.”
Florida Epilepsy Services is hoping to plan some fundraisers in the near future. They currently receive funding from the Florida Department of Health, United Way, and private contributions. Along with helping people diagnosed with epilepsy, the group goes into the community and trains people how to properly help someone who is having a seizure.
Grant says there is a huge lack of information out there. “People really don’t know what to do when they see a seizure,” he explains. “Everyone’s seizures are different and how it affects them.”
To lower the chances of having more seizures:
• Take the medication exactly as directed and avoid missing or taking doses late
• Get plenty of sleep
• Stay well hydrated
• Avoid alcohol and drugs
• Avoid triggers: stress, intense exercise, loud music, flashing lights
But epilepsy isn’t just about seizures, says Grant. It can effect the entire family if the patient can’t drive or work. “It’s a ripple effect,” he says. “Epilepsy doesn’t discriminate across age, gender, or race.”