What do Theodore Roosevelt, Napoleon Bonaparte, Neil Young and Prince have in common? They all had epilepsy.
“Epilepsy looks different from person to person,” says Beth Dean, CEO of CURE Epilepsy, a non profit working to fund grants and raise awareness of epilepsy. “There are over 40 medications for treatment, various devices to help control seizures, as well as surgery, and still, a third of the patients, or 1.2 million people in the nation, aren’t able to control their epilepsy.”
Epilepsy is the fourth most common neurological condition and currently affects almost 65 million people worldwide, with nearly 80 percent of cases occurring in low- and middle-income countries. Here’s what you should know about epilepsy during its awareness month.
Have we Always Known About Epilepsy?
A 4000-year-old Akkadian tablet in Mesopotamia details the earliest account of epilepsy. Nearly a millennium later, the Late Babylonians composed a diagnostic manual titled Sakikku, which included epilepsy-related texts.
In this guide, the Babylonians described several seizure types and classified them according to their appearance, documenting a variety of types prevalent today. It also associated epilepsy to the names of evil spirits or gods.
Science has progressed since Babylonian times, but there are still many myths that surround epilepsy.
“While most people now know that people with epilepsy aren’t possessed, there are still several myths surrounding the disease, especially when it comes to first aid,” Dean says.
The Centers for Disease Control and Prevention estimated that in 2015, 1.2 percent of Americans— three million adults and 470,000 children — had epilepsy. During their lifetimes, one in 26 Americans will be diagnosed with the disease in one way or another. There are also approximately 1.16 cases of Sudden Unexpected Death in Epilepsy (SUDEP) for every 1,000 epileptics each year, though estimates vary (SUDEP refers to epileptic deaths that aren't brought on by trauma, drowning or other recognized causes).
“The most important myth to correct is that if someone is having a seizure, never stick anything in their mouth. They’re not going to swallow their tongue,” says Dean.
What to Know About Seizures
Epilepsy is complex and there are many triggers. It most commonly stems from genetics. It is now known that 30 to 40 percent of epilepsy runs in the family. It can also stem from either poor brain development due to a childhood disease or brain damage that causes a structural alteration of the brain.
Head injuries, infections such as meningitis, a stroke or a tumor can also cause epilepsy, as well as genetic disorders, such as tuberous sclerosis or neurofibromatosis that cause changes in brain structure. In older adults, dementia can increase the risk of epilepsy.
And with epilepsy, comes seizures. Abnormal brain activity can cause seizures, specifically electrical surges in the brain. Most attacks occur suddenly and without warning and last only a few seconds or minutes, ending on their own.
There are two types of seizures, called generalized and focal. Generalized epilepsy is a type of seizure in which all parts of the brain are affected. These seizures come in six different forms.
Absence seizures — These seizures, which used to be called "petit mal seizures," happen most often in children and are marked by staring into space or small body movements like blinking or smacking the lips. These may happen in groups and make a person lose consciousness for a short time.
Tonic seizures — The muscles tighten up or become tense in these seizures. However, while they can make a person fall to the ground, they generally occur during sleep and are normally less than 20 seconds.
Atonic seizures — Known as drop seizures, they cause a person’s muscles to become limp. If standing, the person might collapse or fall.
Clonic seizures — Muscle jerking that happens over and over, or in a pattern, is a sign of a clonic seizure. Most of the time, these seizures affect the face, neck and arms.
Myoclonic seizures — These seizures cause the arms and legs to jerk or twitch quickly and briefly. Generally, these don’t last more than a second or two, but many may occur in a short time.
Tonic-clonic seizures — The most dramatic type of epileptic seizure and what one usually thinks about when they hear the word “epilepsy,” tonic-clonic seizures can cause sudden loss of consciousness, stiffening and shaking of the body, and sometimes involuntary urination or biting of the tongue.
Focal seizures, like the name suggests, only affect one area of the brain. They are usually less severe than generalized seizures, which involve both sides of the brain and body. Focal seizures are the most common form of epileptic seizures, and are frequently associated with conditions such as strokes and head injuries. Focal seizures can separate into two groups:
Focal seizures where people retain consciousness — These seizures, which used to be called simple partial seizures, don't cause a loss of consciousness. They can cause a body part, like the arm or leg, to move on its own without the person's control. They can also cause spontaneous sensory symptoms, like feeling dizzy or tingly.
Focal seizures that make it difficult to focus — These seizures, which used to be called "complex partial seizures," cause a change in or loss of consciousness or awareness. People with this type of focal seizure may just stare into space and not react normally to their surroundings. They may also make repetitive movements, like walking in circles or rubbing their hands.
When responding to seizures, it’s essential for friends and co-workers to know that a person has epilepsy and what to do in the event of a seizure, according to Dean. If someone is having a seizure, turn that person on their side, remove glasses if they are wearing them, put something soft under their head and time the seizure. When the person wakes up, they will most likely be confused, so it is important to stay calm.