By Jean Cibula, MD, FAES
November usually means the end of the hot weather and the start of the holiday season. It is also Epilepsy Awareness Month, and a time for talking about how epilepsy affects people’s lives.
According to the Centers for Disease Control, approximately 3.5 million Americans have epilepsy, including half a million children. Epilepsy is the same thing as “recurrent seizures” or “seizure disorder”. In the US, 1 in 10 people will have a seizure in their lifetime, but only 1-2 in 100 will have recurrent seizures. Most people with epilepsy do not have other physical or intellectual problems.
When people first see us, they are often surprised that seizures can be a staring spell, inability to talk, or have limited neurological effects like shaking of the arm or leg as opposed to convulsions. Of course, TV has influenced our impressions, since convulsions are much more dramatic, but people don’t always talk about what their seizures are like. Seizures can last a few seconds to a few minutes, and the behavior that is seen during the seizure is determined by the part of the brain involved. (And no, we don’t just use 10% of our brain! That’s for another blog!) An aura is a feeling or something that people experience at the very beginning of their seizure. It is actually the start of the seizure before it spreads to other parts of the brain. Seizures have many causes, including head injury, stroke, infections and developmental issues. Unfortunately, we can’t always pinpoint the cause; instead, we concentrate on treating the seizures so your quality of life is the best it can be.
Your doctor will want to know what the seizures look like- having an eyewitness report is important, and cell phone video is often helpful. It’s also helpful to know when and how often the seizures happen. For example, some seizures may only happen at night or may be triggered by hormonal changes. This can help us customize your treatment.
For about 2/3 of people with epilepsy, seizure control will happen with the first or second medicine. For others, finding the right therapy to keep seizures under the best control possible with the fewest possible side effects may be more challenging. For hard to treat epilepsy, there are implantable devices, brain surgery, and diet options, among others.
First aid for seizures consists of preventing injury, and if the person is lying down, they should be rolled onto their side to keep their airway open. People can stop breathing during a seizure, but will start breathing again when the seizure ends. If they are standing up, they may need assistance to lie down or sit down. If they are known to have a seizure, and the seizure is different, longer or harder than usual or they are not waking up as quickly as normal, then emergency services are needed. Of course, if the person has never had a seizure before, you should call 911 immediately.
Several years ago, a Girl Scout working on her Silver Award used the acronym ACTION to help people learn about first aid.
- Assess the environment
- Cushion the area
- Time the seizure
- Identify: Look for medical jewelry
- Over: Let the person rest when the seizure is over
- Never put anything in the mouth
The Internet has lot of information available, but some of our favorite sources are:
- The Epilepsy Foundation of America: https://www.epilepsy.com/ (lots of answers to questions)
- To find a local support group: https://www.epilepsy.com/affiliates
- Epilepsy Florida: http://www.epilepsyfl.com
- Epilepsy Association of Central Florida: http://epilepsyassociation.com/
- Center for Independent Living for North Central Florida: http://cilncf.org/
- WebMD: https://www.webmd.com/search/search_results/default.aspx?query=epilepsy
- The Anita Kaufmann Foundation: http://akfus.org/first-aid-videos/
- International Purple Day is March 26: http://purpledayeveryday.org/
Happy Holidays! And don’t forget to wear purple during Epilepsy Awareness Month!