November is Epilepsy Awareness Month, represented by a purple ribbon. Epilepsy affects 1 in 26 people, and I happen to be the 1 in 26.
The numbers
First I’d like to talk about the numbers. Contrary to popular belief, epilepsy is not rare. In fact, it is the most common neurological disorder, affecting over 3 million people in the United States. I’ve previously mentioned that epilepsy affects 1 in 26 people, but to put it into more perspective, there are more people in the U.S. with epilepsy than people with cerebral palsy, muscular dystrophy, multiple sclerosis, and Parkinson’s disease COMBINED. This means that in your 200+ person college lecture, there is probably at least one person in the class with epilepsy, and you wouldn’t even know.
my experience
Around age 12, I started having focal impaired awareness seizures (also called complex partial seizures). These seizures look like the person is staring off into space and unresponsive to external stimuli.
“Focal” means that they come from one part of the brain — for me, it was my temporal lobe.
“Impaired awareness” means the person has confusion or a change in their level of awareness during some or all of the seizures (complex partial).
When people think about seizures, most don’t immediately think about this kind. More often, they think of tonic-clonic seizures, many times referred to as grand mals, so these seizures are often missed. After eight years of trials with meds that weren’t working, I had a surgery that took out the part of my brain that was causing the seizures (the focal part of the seizure title) which worked!
seizures
There are many different types of seizures, the most common being focal seizures. Focal seizures can include complex partial, simple partial, and tonic-clonic. I’ve previously mentioned complex partial seizures. Simple partial seizures look the same, but the person has awareness.
Tonic-clonic seizures include stiffening of the muscles (tonic), and soon after, jerking movements (clonic). Remember, these are general descriptions; there are many more types of seizures that a person can have, and they all look different depending on the person!
epilepsy myths
All epileptics should avoid flashing lights
This is a huge misconception by many people, but flashing lights only affect less than 5% of epileptics! These people are said to be “photosensitive” to the lights and should avoid them to prevent seizures.
Epileptics can’t drive
This one makes sense, since obviously it would be extremely dangerous if someone had a seizure while driving. However, depending on the state’s laws on how long they need to be seizure free and how well their seizures are controlled, people can drive with epilepsy.
If someone has a seizure,they have to go to the hospital.
Seizures could be dangerous and scary, but you should only call 911 if the seizure lasts more than 5 minutes, they are having trouble or are not breathing, the seizures are clustered (one after the other), or if they are injured.
If someone has had many of these seizures before and none of the above occurred, you do not need to call 911. This is a normal occurrence for them and they will usually be okay post-seizure. Whether you called 911 or not, always keep someone in a seizure on their side (if it is a tonic-clonic seizure), time the seizure, and watch their breathing.
If a person is seizing, you should put something in their mouth so they don’t swallow their tongue.
I don’t know where this one came from, but I hear it a lot. NEVER put something in someone’s mouth if they’re seizing. It is physically impossible to swallow your tongue. If none of the dangers listed above occur, stay with them, follow seizure protocol, and wait the seizure out.
Not just seizures
Epilepsy is not just seizures. Even if they aren’t having seizures, anti-seizure medications come with many side effects that could be affecting epileptics daily like exhaustion and dizziness. Epileptics may also have memory issues or trouble concentrating due to the medications, surgery side effects, or damage from the seizures itself on their brain, as well as mental health issues. This could be a reason why someone with epilepsy may cancel plans last minute, sleep a lot, and ask questions previously answered. Keep this in mind, and give them grace!
Final thoughts
The best thing you can do for someone with epilepsy is to be there for them, both during their seizures and outside of them, when they might be struggling with anything else that epilepsy can bring. This Epilepsy Awareness Month, take the time to learn the truth about epilepsy, the myths surrounding it, and how you can support people with epilepsy.