**DISCLAIMER** This is a long and very wordy post discussing epilepsy and seizures. Please stick with it and read through carefully for all info. Also, please note I am not a doctor or a nurse and for all of the info provided here I have given the links to where I found it. I strongly encourage you to follow the links and read the wealth of information that is out there about epilepsy. Thank you!
This post is a little out of the ordinary for me. I’m going to touch on a very personal issue affecting me and my family, epilepsy. I’ve been thinking about doing a post on this subject for a while now. I know first hand the difficulty and terror of watching a loved one have a seizure. My husband has epilepsy and suffers from seizures during his sleep. This doesn’t happen often but when it does it is absolutely terrifying. I wanted to share with you some basic information about epilepsy and seizures. We will discuss how to provide first aid, look at stereotypes and even some famous people who have dealt with epilepsy.
My husband, Alan, has dealt with epilepsy since he was a young boy. He would have spouts where he would just blank out and stare off into space. It wasn’t until years later that he had his first “real” seizure one day after playing at the beach with his friends. One unique aspect of his seizures is that he only has them during his sleep. He’s NEVER (knock on wood) had a seizure while awake. Because of this doctors are now questioning whether or not he is truly an epileptic or if the “episodes”, as these doctors are calling them, are related somehow to a sleep disorder. Only time will tell I suppose. When people find out he’s epileptic they are always shocked!
I will also touch on how to handle a child having a seizure. Today a good friend of mine watched in terror as her 1-year-old had a seizure. Her sweet baby has never experienced anything like this before. She and her husband reacted quickly, called 9-1-1 and rushed her baby to our local children’s hospital. It turned out her precious little girl had a febrile seizure, caused by a high fever.
If you are dealing with epilepsy or have a loved one who is, to follow the links I have provided and learn as much as you can where you can.
What is epilepsy?
The Epilepsy Foundation defines epilepsy as “Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.” And a seizure is a surge of electrical activity that affects the brain in turn it can affect muscle control causing ticks, body jerks or convulsing spasms. Many times the person experiencing a seizure will have their eyes roll back in their heads, they may moan, scream or even run at the onset of a seizure. Some people experience an aura aka a warning sign that a seizure is coming on where as others do not.
Who Can Have a Seizure and Why?
According to the site, 1 in 10 people will experience a seizure at some point in their life! Seizures can happen to anybody at any given time. I just read something about more and more women are experiencing seizures while going through menopause. It does make you wonder if these are brought on by environmental conditions, chemicals or additives that we may be exposed to over our lifetime. That’s an entirely different post.
My husband gets asked a lot what has caused his seizures and the answer is no one really knows. He had a very bad fever/illness when he was a toddler that landed him in the hospital. That could have caused it or it could be a number of many other things. Who really knows.
There are common causes of seizures that are known and yet there are still many mysteries associated with epilepsy. Some common causes are brain malformation at birth, high fever as children or adults, head injury and stroke. There are many more that you can read about here. I’m sure some of you readers have noticed warnings on video games, movies or even amusement park rides stating something like “beware flashing lights may trigger seizures.”
Safety and Precautions
Sometimes you can feel like a ticking time bomb when dealing with epilepsy. Never knowing when the time will come that a seizure will creep up and attack you. There are a slew of precautions one must take in order to keep themselves or their family members safe if and when a seizure takes place. For instance, place padding on counter-top corners, lay extra padding down under carpet, and use kitchen chairs that have arms on them to help prevent falling. If you are in need of other safety precaution ideas then click here. It is a link to the Epilepsy Foundations site where they list a ton of suggestions for the home, kitchens and bathrooms. Really good suggestions, things you wouldn’t typically think about.
Injuries Obtained due to a Seizure
Many times when a person is having the onset of a seizure they will fall over and lose all control of their body. So many folks have had serious injuries because of falling and hitting something. I worked with a man who had horrible seizures, sometimes at work. I remember once we were all in the cafeteria getting lunch when I heard a crash behind me. He had fallen to the ground and was in the middle of a seizure. On his way down he hit his head on the ledge that held the lunch trays as you moved through the line. He had a nasty gash on his forehead and was transported by EMS to the local hospital.
Head injuries like this can add to the already volatile condition of epilepsy. If someone hits their head they need to be monitored closely after they regain consciousness. They may experience vomiting, vision disturbances, headaches and difficulty staying awake. These are signs of a concussion and should be taken immediately to a doctor for further examination. For more information click here.
I’m not going to lie or sugar coat this at all, diagnosis can be tricky, time-consuming and frustrating. But hang in there and have hope and faith. It takes finding the right doctor who will actually listen to you and administer the right tests. My husband’s old doctor diagnosed him but really didn’t do much about looking deeper into the issue. He suggested my husband have a generator installed in his chest that runs a wire to the Vagus nerve in the spinal cord. It’s called a VNS (Vegas Nerve Stimulation). It zaps his nerve every few seconds with a slight electrical shock. It is supposed to keep the seizures at bay. This has helped a lot but didn’t stop the seizures.
After a very disappointing and frustrating doctor appointment one day we decided to get a new neurologist. Let me just say, if you don’t feel your doctor is listening to you, showing you respect or you get the sense that you could be better helped by going somewhere else, then do it! Don’t play with your health, especially when seizures are involved. This is why we switched. And now we are scheduled to meet with an Epileptologist (a neurologist that specializes in epilepsy and has received additional education on epilepsy and seizures). For more info on the process of diagnosis click here. To find an epileptologist in your area and to learn how to pick a good one that fits your needs click here.
Administering First Aid
It can be terrifying to watch someone you know, love or don’t even know at all have a seizure. For instance, my husband’s seizures are different from most you will read about since he only has them in his sleep. The general process and cycle of the seizure is the same as someone who has them while conscious, but the onset is different. He does not experience any auras. He has no warning signs at all. The only trigger I can really see is exhaustion and stress. When he hasn’t got enough sleep or is stressed about whatever, I know that it’s a matter of time before he has a seizure.
According to The American Epilepsy Outreach Foundation, the key thing to remember is the basic C’s: Calm, Clear, Comfort, and Call.
Calm: Keep a calm mind. Stay calm, you must be the cool and collected one here. Remember to time the seizure. You can freak out later when it’s over. Hold it together and stay strong, you can do it!
Clear: Clear the area of anything that could hurt the person having the seizure. Move anything they may hit or knock on themselves.
Comfort: Comfort the person as they are going through the seizure and during recovery. Place the person on their side, place something soft under their head. NEVER NEVER NEVER place anything in their mouths. I knew a woman who would put a towel in the mouth of an epileptic so that he didn’t bite his tongue. Big No NO! The person could easily bite your fingers and injure you or bite off a piece of the towel and choke. Do not try to administer medications or liquid to anyone who has just had a seizure.
Call: Call 9-1-1 if the seizure lasts longer than 5 minutes or followed by another seizure, if they are injured, stop breathing, pregnant or having a seizure for the first time. Reassure anyone around the person that help is on the way, or tell them what is happening, make sure they stay clear of the area.
Here is a poster that you can use provided by The American Epilepsy Outreach Foundation to educate others or to keep for yourself. http://www.epilepsyoutreach.org/assets/files/AEOFflyer(1).pdf
Here is another flyer that may help from the Epilepsy Foundation of Australia. I’m not sure if it originated with them but that’s where I found it, you can see a bigger image here.
First Aid for Children
First aid for kids is the same as for adults. Remember the three C’s. Below is a list of what to do and not do from WebMD. Your priority is to protect the child from harming themselves.
- Help the child lie down
- Remove harmful objects from the area
- Do not put anything in their mouth
- Check for breathing and if not breathing then immediately call 9-1-1
- When seizure ends, place the child on his/her side and stay with them until help arrives
Breaking down Stereotypes
There are so many stereotypes associated with epilepsy. I want to briefly touch on some of these. These stereotypes annoy me. I understand that people may not get it, or are misinformed but still. That’s why I’m going to lay some of this out on the table for you right now. Here is a short video that may help answer questions as well.
1. People with epilepsy are cognitively impaired or mentally slow.
I was having a conversation one day about seizures with an acquaintance. She had many questions which I gladly answered. I really try to get the word out there about epilepsy and seizures. The woman I was speaking with asked me, “well hasn’t the seizures affected your husbands intelligence, I thought they made people slow”. I took a few long deep breaths and counted down from 10. I then gladly answered her with NO, he is not slow mentally and does not display any signs of such symptoms. This is a common stereotype from people. In fact people suffering with seizures are of average intelligence. The seizures will not effect the cognitive ability of a person. Now, if seizures go untreated then they could suffer some long-term effects like damage to brain cells. But people who are treated and monitored for their seizures rarely have mental side effects. In fact my husband is amazing! I’m going to brag a little here, sorry but I’m so proud of him. He has 4 college degrees! An Associate of Arts in Business, a Bachelor of Arts in Business Administration, an MBA and a Masters in Theology. He is brilliant. I admire him for his strength and perseverance.
2. People with epilepsy are aggressive individuals.
Absolutely not. Mind you, seizures can cause aggression, especially during recovery when the individual just doesn’t know what’s going on. They are regaining consciousness and may be confused and scared. That’s understandable for an outburst. But to say they are aggressive is absurd.
3. Epilepsy is a mental illness.
Nope. It is not a mental illness and does not cause mental illness.
Famous People with Epilepsy
There are countless famous people throughout history that lived with seizures. Just to name a few are Julius Caesar, Napoleon, Charles Dickens, Socrates and Alfred Nobel. One of my favorite stories is about a famous baseball player, you might have heard of him, his name was Grover Cleveland Alexander. Grover suffered from epilepsy and he tried to self medicate by drinking alcohol. There are many recounts of him fall down on the pitcher’s mound and convulsing. People just assumed he was drunk but in actuality he was having a seizure. He’d recover then play on with the game.
Another sufferer of epilepsy is Adam Horovitz who is the lead singer for the band, Beastie Boys. He says the epilepsy was brought on by flash photography during one of his concerts. He doesn’t let it slow him down though. He still performs concerts despite the likelihood of having a seizure.
This past summer during the Olympics, there were many athletes that were competing in front of the entire world while suffering from epilepsy. I was so inspired to read the stories of some of these young athletes and their pursuit to accomplish their dreams. They are a real inspiration.
It is my hope that this extremely long post has been informative and given you a bit of insight about epilepsy and seizures. If you are dealing with seizures or are a care giver (wife, mother, husband, father, etc) caring for someone with seizures then I recommend joining up with a support group of sorts. There are many online through epilepsy foundations that allow you to get connected with people going through the same things. It really does help to know that you are not alone and there are many people out there going through the same thing as you. You are more than welcome to leave a comment here as well, I would love to hear from you.