Living with Epilepsy
According to the Epilepsy Foundation, epilepsy is a neurological condition that makes people susceptible to seizures. A seizure is a change in sensation, awareness or behavior brought about by a brief electrical disturbance in the brain.
Seizures vary from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions. Some people have just one type of seizure. Others have more than one type.
I am also guilty of having believed, until recently, many of the myths about epilepsy. Most of us have heard that epilepsy patients can swallow their tongues when they have a seizure. Some even think of epilepsy as mental illness or a disease.
All of these statements are untrue, said Rachel Livingston, Director of Programs and Services for the Epilepsy Foundation Central & South Texas.
“Another myth is that you should hold them down. You shouldn’t because you can injure them,” added Livingston. “You want to make sure the airway is clear. Make sure you loosen anything around their neck like a tie or necklace.”
She also advised that it is not necessary to call 9-1-1 every time someone has a seizure. The only reason to call emergency personnel is when 1.) it is the person’s first seizure or if 2.) the seizure lasts more than 5 minutes.
Calling 9-1-1- every single time an epileptic has a seizure can create an unnecessary ruckus.
“For people with epilepsy, it is just another day,” said Livingston.
One person who knows all too well about living with epilepsy is Pete Smith*, an Atascosa County resident who was first diagnosed about nine years ago. He gave some insight into how the condition has affected him, as well as his family.
“I didn’t realize they were seizures. I’d wake up and there would be blood all over my pillow and sheets. A few minutes after I woke up my tongue started throbbing and hurting. I realized I had bitten my tongue. I would feel groggy. About a year later, I started noticing during the day I would have... kind of like a daydream. I could hear and understand others, but I couldn’t talk. Then it started getting worse,” said Smith.
Another time, Smith was staying at the coast with his family. Smith’s brother noticed he was moaning so badly it woke up his parents. After seeing his regular doctor and then a neurologist, Smith found out he had partial complex seizures.
An MRI found it was on the left side of his brain. This, said Smith, would make him a good candidate for surgery in the future.
Smith soon started taking 500 mg twice a day of Keppra.
Smith has changed neurologists several times and is in the process of finding the right one. Some doctors don’t check Smith’s blood levels like they should, while others are unaware of terms usually known by other doctors.
“I’ve heard you may go through 10-15 doctors before you find the right one, since there are so many different types of epilepsy out there,” said Smith’s mother, Sharon Smith*.
The two have a system in which she asks if he is okay. If he doesn’t answer, she gives a thumbs up and waits for her son to give him a thumbs up back. She has to pay close attention when she feels he is in the shower too long.
Also, when he’s in the bathroom, he never locks the door. His father fixed the door so it no longer opens to the inside.
Among his triggers are stress, heat and being dehydrated. He also has to avoid uncomfortable surroundings.
“I love movies, but sometimes it is too big and too loud,” Smith said.
He also has to be careful when his nephew is playing video games, as flashing lights can sometimes affect him. The last two years, anxiety and claustrophobia have really affected Smith. He had difficulty having an MRI done.
“I wound up crawling out. Then I later found out I only had 10 minutes left to finish it! They even tried giving me medicine to sleep and that didn’t even work.”
Another fact that the Smiths and Livingston pointed out is that epilepsy can develop at any age.
“Some have it as children and outgrow it. Some develop it later. There is a report that found one in 10 will have a seizure in their lifetime and one in 26 will develop epilepsy. It is a shocking number and we are trying to get that number out,” said Livingston.
Smith’s mom talked about how it is difficult to see a person having seizures. The important thing, she said, is to keep them on their side, but not forcibly.
“As far as the seizures, you have to just let him go through it because his body is so rigid. Try to get him to a safe place,” said Smith. “Check that there is not any debris around.”
The family has found comfort and hope in local events and online support groups.
In March, they attended the Epilepsy Foundation’s Purple Day Out Walk. Although it was directed more toward small children, the Smiths learned a lot from neurologists and pediatricians.
Smith also follows Epilepsy on Facebook. It also serves as a good environment to share experiences with others on medications, the stigma attached to epilepsy, etc.
“Anyone can join. You don’t have to have epilepsy to post.”
Smith has a dream to hold a 5K Walk next year. He even has a T-shirt design.
“I just have to make sure I get myself out there to do it,” he said. “He’s going to have me pushing him,” added his mother.
His mother also wants people to have more awareness and understanding about epilepsy.
“It can be hard. It is treated like a disease and it is not. It is a neurological condition.”
On a national level, there is the Turn the White House Purple that Smith follows on Facebook.
The family also discussed the difficulty in paying for doctor visits and medication. During one of his seizures in which his heart rate stayed up too long, a hospital trip was required. The bill was over $5,000.
Smith’s mom shared the importance of good doctor/ patient relationships.
“Sometimes if doctors would just take the time to sit down with you and talk to you and find out what is going on with you, give some options and ideas, it would really help,” she said.
The Epilepsy Foundation Central & South Texas holds support groups monthly. Others are held at Palo Alto College and in New Braunfels. You can call the San Antonio area branch of the Epilepsy Foundation at 210-653-5353 for more information.
Other upcoming events include a golf tourney on Sept. 20 at the Hyatt Hill Country by Sea World.
November also marks Epilepsy Awareness Month. They hold a walk on the northside of San Antonio at Eisenhower Park on Nov. 16. You can visit epilepsyrun.com for details.
The foundation also has an annual camp for kids with epilepsy. Camp Brainstorm is a five day, four day retreat which is free.
As for the Smiths, they remain hopeful and are working toward removing the stigma.
“This is an open door for my son. He wants to do that walk next November. He wants to bring more awareness to epilepsy.”
• A study released January 2011 reports an estimated 1 in 26 Americans will develop epilepsy in their lifetime, a risk that translates to about 12 million people in the United States.
• Men have a higher risk of developing epilepsy, with a rate of 1 out of every 21 males.
• Epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke. It is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined.
• This year another 200,000 people in the U.S. will be diagnosed with epilepsy.
AGE OF ONSET
• Epilepsy strikes most often among the very young and the very old, although anyone can get it at any age. In the U.S., it currently affects more than 326,000 children under the age of fifteen, more than 90,000 of whom have severe seizures that cannot be adequately treated.
• The number of cases in the elderly is beginning to soar as the baby boom generation approaches retirement age. Currently more than 570,000 adults age 65 and above in the U.S. have the condition.
*SOURCE: Epilepsy Foundation Central & South Texas
• Lack of knowledge about proper seizure first aid exposes affected individuals to injury from unnecessary restraint and from objects needlessly forced into their mouths.
• Of major chronic medical conditions, epilepsy is among the least understood, even though one in three adults knows someone with the disorder.
• Epilepsy is not a single entity, but a family of more than 40 syndromes that affects more than 3 million people in the U.S. and 50 million worldwide.
• 30 to 40 percent of people with epilepsy are severely affected and continue to have seizures despite treatment.
*SOURCE: Epilepsy Foundation Central & South Texas