Epilepsy Myths Debunked

2015-0610 Myths vs Facts ver 2

Even today, myths, misconceptions and discrimination can surround epilepsy, often causing more distress than the seizures themselves, and limiting people’s participation in society. Let’s debunk some of the more common myths.

Myth: Epilepsy is contagious
Fact: You cannot catch epilepsy from another person!

Myth: Epilepsy is a form of mental illness
Fact: Epilepsy is not a mental illness. It is an umbrella term covering different types of seizure disorders. It is a functional, physical, neurological condition, affecting approximately 37,000 people in Ireland.

Myth: All people with epilepsy must avoid flashing or flickering lights
Fact: Only about 3-5% of people with epilepsy are photosensitive. As a result, the vast majority of people with epilepsy do not need to avoid flashing lights. Even most of those who are photosensitive can still watch television and use computers without significant difficulty as only particular patterns actually cause seizures to occur.

Myth: All seizures involve falling to the ground and convulsions
Fact: A convulsive (or Tonic-Clonic seizure) in which the person becomes rigid and shakes is just one of the many different types of seizures. Seizures involve different parts of the brain and depending on which part of the brain is involved, there will be different physical symptoms. For example, a seizure may also lead a person to experience blank stares, rapid blinking or intense emotional and/or physical sensations (e.g. fear, joy, unpleasant sights or smells). It is also not true that all seizures involve a loss of consciousness. If a person has a Simple Partial seizure, they will know what is happening and are aware that they are having a seizure.

Myth: You should put something in a person’s mouth during a seizure
Fact: This myth stems from a mistaken belief that during a seizure, people can swallow their tongue or suffocate. In fact, it’s physically impossible to swallow your tongue and you should never force something into the mouth of someone having a seizure or try to hold their tongue. You could damage teeth, puncture gums, or even break someone’s jaw. You also risk being bitten if you attempt this.

Myth: You can stop a seizure by holding the person down
Fact: Do not attempt to stop a seizure by restraining the person experiencing a seizure. Instead, protect the person from injury by removing any harmful objects that may be nearby. Cushion the person’s head and gently place the person in the recovery position when the seizure has finished. Stay with the person until recovery is complete.

Myth: All seizures require immediate medical attention
Fact: Seeing someone have a seizure can be very frightening and instinctively many people call an ambulance. However this is not always necessary. An uncomplicated convulsive seizure in someone who has epilepsy is not a medical emergency, even though it may look like one. It stops naturally after a few minutes without ill effects. The average person is able to continue about his/her business after a rest period, and may need only limited (or no) assistance in resuming their normal activities. 

Myth: People with epilepsy can’t drive a car
Fact: In Ireland a person who is seizure free for one year can legally drive a car.

Myth: Epilepsy will affect a person’s ability to take part in sports or other leisure activities
Fact: A lot will depend on the degree of seizure control and the type of sport activity involved. Everyone’s epilepsy is different

All myths and facts in this post appear on the Epilepsy Ireland website.

Click here to read another Beyond Adversity post.

16 Comments

  1. My husband has been epileptic for over 54 yrs now but heard on telly yesterday about a sudden death thing connected to being epileptic I’ve never heard of this before do you have any info on this my husband has 4/5 different types of seizures and very hard to get proper med’s control so life has been hard for us he Is 62 yrs old now and ot coping so well as he used to.

    1. Liz, as a survivor of cancer, brain injury, multiple TIAs, ataxia, and vertigo, I certainly understand the desire for a “quick fix.” However, I am reluctant to believe a quick fix will be offered online or on T.V. I’m not suggesting it will never happen, but I am suggesting you should be extremely cautious no matter what amazing statistics you hear — the statistics may not be real, and they may not apply to your husband. Keep in mind there are side affects associated with every treatment. I have an appointment shortly, so I must leave. I will respond to your question in a few hours when I return. ~ Scott

    2. Hi Liz, Unfortunately the program you saw on the “telly” did not give a better explaination of sudden unexplained death in epilepsy SUDEP. Although SUDEP is not included in the Myths, undoubtedly because it is, an all too real fact of epilepsy. The relative incidence of SUDEP is low, as compares the total volume of patients having epilepsy.
      There are as yet, unexplained risk factors involved in its occurrance. The recent cases that have been been studied, whether occurring alone or witnessed, have provided valuable research data assessment information. Patients and caregivers often choose to access this data and risk assessment information through their personal healthcare providers. Perhaps you could open up a frank discussion with your husband’s doctor on his next visit, to ease both yours and his anxiety, while better communicating the need for control of his remaining seizures? Having the benefit of your husband’s health history in view, only your husband’s doctor is best able to provide an accurate risk assessment for SUDEP. Take care-

  2. I have a son who was diagnosed with epilepsy since 9mth. He is now 12yr old. When he was a baby, my aunts used to tell me that my son will not be able to go to normal school and be ‘normal’. I was determined to proof them wrong. Despite of some initial delays in walking, fine motor skills and speech, he is now finally the top 10 student in a boarding school. He is also a school representative in hockey and debate team. I can still remember when he has seizure due to classmates laughing at him. He peed in his pants and he couldnt speak. Many2 sessions throughout his primary school. He was lucky he had very caring friends. And most of all, his attitude. He struggles hard to score in his exams but he himself strive to be a better person. He learns to cope with his disability. He accepts advise and will pray and recite the quran as it seems to stabalize his emotions. I am thankful for information and the interaction with webpages like yours and links that help guide us to care for people with epilepsy. It is a challange but there is always hope. We should never give up on them and they should never give up on themselves. My son is now 3yr seizure free. Alhamdulillah.

    1. I am happy to hear of your son’s fantastic progress. If you would like to share a short article about your role as a caregiver, I am happy to make the blog available for you.

      Best wishes,
      Scott

  3. Until this year-I believed several of these epilepsy myths. Then I met a fellow student who has a seizure disorder. She has been free of seizures for close to 1 year. Today, she is managing her disorder after having surgery and by taking light dozes of medication everyday. She shared her story with my class and I learned a lot. Perhaps the biggest issue is on how to handle things if she has a seizure in our presence. She provided us with a fact sheet from the CDC which detailed what to do. That information indicated you should NOT hold the person down and should NOT put something in their mouth during a seizure. My fellow student was also looking forward to getting a drivers license if she continues to remain seizure free for 1 year.
    Thanks for posting this very important information!

    1. Cheryl, please send the fact sheet to me. I will gladly post it. If your classmate would like to share her story on my blog, I would like to share that as well.

  4. Perhaps we could have a little conversation over these other seizural states? I have been very fortunate to have been in the best of general populace care after epilepsy surgery almost thirteen years ago. To this day, when having Complex Partial seizures, it is relatively easy for some people to understand they are a seizure, and they were not as quick to strongly intervene rather offering more of a custodial type of care. If gobble-de-gook is emanating in speech, most now ask if I am ok, waiting for either the seizure to clear on its own, or other manifestations to occur. I may not have the presence of mind or awareness at the ready for answer and perhaps the seizure will geneeralize into a TCS. My knowing caretakers remain vigil to let the seizure either manifest and make sure that I have the safety and care that is appropriate for my needs. Remaining seizures vary in physical activity and the length of time they last. In a most recent Complex Partial Seizure (CPS) and at mid-point, my neighbor watched as I sat on our shared concrete patio in CPS, drawing both on the concrete and my right foot clad in high heel shoe with a disposed cigarette butt. He knew instantly I was seizuring, the activity being antithetical to my nature and a vision to behold. Lucky for me, he has a nephew that also has epilepsy, therefore quite used to the various epilepsy manifestations. He waited, watched and chuckled to himself as his 50+ yr old neighbor lady clad in a dress, in a most odd manner, used a dead cigarette butt for no visible purpose at all. After the approximate four minutes it took to establish that I was ok if not, highly intent on what I was doing, the seizure ended. When he felt comfortable that I regained awareness and other faculties, he informed me of what had occurred and knew that I was safe at our homes in the apartment complex. Although seizures are hazardous to general brain health, that was one odd seizure, still yet the brain enjoys health in other areas. Both amazed and enchanted with the organ and its wonderful capabilities, we enjoyed a laugh together after cheating the hospital out of another visit. For many, tonic clonics and the drop attack seizure are those most affiliated, yet many refuse to discuss the CPS…until we talk about it all, the stigma and myths persist.

    1. Lori, following long comments is a little challenging for me. I think you are suggesting I share some information, but I wanted to ask you what it is you want me to share.

      1. Ooops, sorry that I was not clear Scott. Many times for those of us experiencing tonic clonic seizures, we will often manifest other seizures over time. I know this because I was seizuring almost thirty years before I was diagnosed. I have had the chance to live in larger cities with support groups and know others that have had similar past experiences. Perhaps you could remind your readers of the general auras, sensations, warnings of seizures. In example, how would a person know a child is having a seizure, an adult? What if it is not a tonic clonic seizure, but another type? What of the adult in the workforce? The better we educate the public on these basics over and above the tonic clonic seizure, the many more of us that will be able to stay active in the workforce, not left out or let go because of fear or malice. Children and adults need accurate diagnoses out of those in the schools and workplaces. More apt to be seen by educators during the school year, other people with seizure disorders, that I have takled with have commonly given the same example of the outdated educators expression, and a behavioral manifestation she was “daydreaming” in the classroom, when in point of fact no behavioral problem existed. What was displayed was an absence mal seizure. Early treatment is important and still remains to be the best chance in getting beyond the many adversities of epilepsy. What I express is having to do with the basic care business of epilepsy and management thereof, when relating necessary care information also. Now, how and when would I best explain what to watch for to a potential future employer? I live in a Right-To-Work state.

      2. Lori, you raised an important issue. I will be happy to write the post. However, I have a few other posts scheduled for this week, so I may not be able to get to the post this week, and I may divide the post into multiple parts so no part of the post is too long.

      3. Lori, I wanted to let you know that I am not an attorney, I do not work for any organization that analyzes labor law, and my post or posts will not address state laws or union requirements.

  5. This was a helpful posting for me. I do not know of anyone close to me who has epilepsy and I found out I believed some of these myths. I learned them when I was growing up but at the time I was probably getting the best information available. Now, however, if I encounter someone who is having a seizure and they are responsive, I will be sure to ask if they would like me to call emergency services and other questions that might allow me to be of assistance rather than making things worse by thinking I might know best and making decisions for them. I also looked on other sites in order to review the recovery position. Thank you, Scott. I appreciate the thoughtfulness with which you choose your postings.

    1. DiDi, I am glad to hear that reading this post improves your ability to help someone else. Thank you for taking the time to read the post and share your feedback with others. Please let me know if there is a specific subject you would like me to cover. If I know something about the subject, and what I know might be helpful to others, I will be happy to post it.

Leave a Reply

Your email address will not be published. Required fields are marked *