There are many misconceptions about epilepsy. Most people know that it is some type of seizure disorder, but let me clear the air…
Epilepsy, by definition, is when someone has two or more seizures. This may not be the official diagnosis, but it is common among those with this disorder. I was diagnosed with encephalitis as a baby, which is a rare seizure disorder. While I have not had a seizure in nearly 9 years, my doctors still consider me to have epilepsy. My seizures have affected my muscles, but I get by just fine. So, let us go ahead and bust some myths you may have heard about this disorder.
Restrain the patient when they are having a seizure. This is the worst possible outcome for the patient. This myth restricts their movement, which keeps them from moving around. I can see how people might think it is a good idea, but these individuals need to be able to kick and fling around freely. Remember, their body is not in control. Their brain has shortly taken over for about the next 20 seconds to a minute. If you feel the need to protect the seizure patient, then follow the guidelines for first-aid. If the seizure progresses over a minute, call 911.
Healthy people do not catch epilepsy. This is another myth I have to bust. Seizures are not only associated with sickness in children. Elderly adults are often at risk too. In fact, the seizure may be a warning sign for something more serious, such as stroke or heart disease. Those that drink too much caffeine or consume too much sugar may also be at risk for developing seizures. Energy drinks with high amounts of caffeine often put people at risk for a seizure, due to the fact that they consume two or more drinks.
Those people with epilepsy are disabled and cannot work. I have epilepsy and I have two jobs (including this one.) I know others with the condition that hold down challenging careers as reporters, and another who has gone to culinary school. Those with epilepsy work in all different jobs, and you would not know they had it unless you asked them. We all need to handle stress, whether or not we have a seizure disorder. There are those, however, that have such severe seizures that they are unable to work. This is tragic, but it does happen.
Nobody knows when a seizure is about to happen. This is part myth and fact, but most of the time, I know when I am about to have a seizure. As I have said, I have had them since I was a baby. Keep in mind seizure symptoms change from one person to the other, but I will describe mine to you. It starts with a severe migraine, and each time I blink, it moves more deeply into my eyes and temples. It is at this point I realize I have about 30 seconds before I black out. This is when I usually get to the floor. I have grand mal seizures (the worst kind, in my opinion), where you lose muscle control and fall to the floor. I imagine I shake up a storm on the floor and about 30 seconds later, I wake up—as I am waking up from a nap. It might not be like this for everyone, but this is how mine usually go.
People with epilepsy have limitations. Honestly, this depends on how many seizures the patients have previously had within they are life. I am fortunate to have had few seizures and few limitations. I walk with a limp on my left side and the muscles of my left hand’s fingers are not coordinated with each other; I got off lucky. There are seizure patients that have to wear helmets because they fall when they have seizures. If their seizures are severe, they may lose the ability to walk, use their motor skills or even talk. This is often rare, but it does happen.
Women with epilepsy should not get pregnant. This statement is 100% myth. There are women that have completely healthy babies while still on their seizure medications. This is where you really have to have an open conversation with your doctor. Several seizure medications cause birth defects in a pregnancy. You do not want deal with clef lip, a miscarriage or worse. There are also seizure medications that are perfectly safe for a fetus. It is just finding the right balance for your seizure history. I am not going to recommend anything because I do not hold a medical background. I just hope you have a great doctor as I do; they make all the difference!
You cannot die from epilepsy. Unfortunately, this very real situation does happen. It is not common, but it should not be out of our minds. The most common cause of death for these patients is sudden unexpected death in epilepsy. It is estimated that 1 out of 1,000 people will die from SUDEP each year. Overall, around 22-42,000 people die of seizures each year. This is a hard pill to swallow, especially if you know someone that has seizures. It is one phone call you do not want to get, but it could and does happen. Fortunately, for me, I am healthy but that could change if I was not loyal to my medicine. Let us hope the person you know is as healthy as I am.
Epilepsy can be manageable or it can very easily get out of control. It is often a challenge finding the right diagnosis, medicine and treatment. Once a doctor controls these, however, it is often a safe bet that your seizures will be far and few between. I am fortunate not to have many seizures at all anymore, but I will be on medicine the rest of my life. There is not a cure for epilepsy, so those that have it must loyally take their prescriptions on a daily basis. Whether you are reading this article for yourself or someone else, it is a great idea to be educated about your health. I hope that these busted myths will help you make smart decisions with your doctors. Good luck to you.