10 Most Common Questions People Ask Me About Epilepsy
July 19, 2020
Over the many years of living with epilepsy, I’ve received a lot of questions about my condition, understandably. Some come up more often than others.
Here are 10 of the most common questions I’ve been asked:
Does it hurt?
It can be different depending on the type of seizure that I have. If I have a complex partial seizure (where, for me, my vision blurs in my right eye for 10-30 seconds) I usually only have a light headache. If I have a grand mal seizure (where, for me, I lose consciousness and my body seizes for 2-4 minutes) that’s a different story. Then after the seizure is over, I feel like I’ve been hit in the head with a brick, a lot of times followed by extreme nausea. Normally, I’ll want to try to sleep it off for the next couple of hours at least, if I can. This can be the same or different for anyone.
Do you know why you have it?
Nope. I’m one of the 70% who don’t know why either. I spent several years undergoing several tests and hospital stays, determined to find an explanation, only to find the location of my seizures, but no discernible reason for them. After all this time, I’m not really concerned with why I have them as much as I used to be. I try to keep my focus on now and the future.
Does anyone else in your family have epilepsy?
I’m an “epilepsy loner,” haha… No one else in my family has it. That doesn’t stop me from taking top notch care of my overall health and encouraging family to do the very same. Sometimes epilepsy can be hereditary and sometimes not. Epilepsy can happen to anyone.
Can it be stopped?
In most cases, it’s an incurable neurological condition. In other cases, sometimes through medication or surgery it can be stopped. In very rare situations, it can go away on its own over time. It’s actually very complex. This is why I am so passionate about raising awareness to help others have a greater understanding of the condition and to fund treatments that may lead to a cure.
What treatments are there for it?
A bunch of “fun” ones that come with a scroll full of side effects and, a lot of times, can’t quite guarantee seizure-freedom.
Antiepileptic Drugs (AED’s) Most people can become seizure-free by taking one medication, which is also called antiepileptic drugs or AED’s. Others may be able to decrease the frequency and intensity of their seizures by taking a combination of medications.
When medications fail to provide adequate control over seizures, surgery may be an option. With epilepsy surgery, a surgeon removes the area of your brain that’s causing seizures.
Vagus nerve stimulation
In vagus nerve stimulation, doctors implant a device called a vagus nerve stimulator underneath the skin of your chest, similar to a heart pacemaker. Wires from the stimulator are connected to the vagus nerve in your neck.The battery-powered device sends bursts of electrical energy through the vagus nerve and to your brain. It’s not clear how this inhibits seizures, but the device can usually reduce seizures by 20 to 40 percent.Most people still need to take medication, although some people may be able to lower their medication dose. You might experience side effects from vagus nerve stimulation, such as throat pain, hoarse voice, shortness of breath or coughing.
Implantable, pacemaker-like devices that help prevent seizures are under investigation. These responsive stimulation or closed loop devices analyze brain activity patterns to detect seizures before they happen and deliver an electrical charge or drug to stop the seizure.
Ketogenic diet A treatment option for both children and adults with epilepsy that has been able to reduce seizures by following a strict diet that’s high in fats and low in carbohydrates.In this diet, called a ketogenic diet, the body breaks down fats instead of carbohydrates for energy. After a few years, the ketogenic diet may be able to be stopped. — under close supervision of doctors — and remain seizure-free.Consult a doctor if considering a ketogenic diet. It’s important to prevent malnourishment when following the diet.Side effects of a ketogenic diet may include dehydration, constipation, slowed growth because of nutritional deficiencies and a buildup of uric acid in the blood, which can cause kidney stones. These side effects are uncommon if the diet is properly and medically supervised.Following a ketogenic diet can be a challenge. Low-glycemic index and modified Atkins diets offer less restrictive alternatives that may still provide some benefit for seizure control.
Let me just say that in most cases, the answer is “yes.” I’ve tried so many different things over the years that I couldn’t even name them all. After living with epilepsy for so long, you find yourself having researched your condition inside and out, including many different possible remedies. Some remedies help a little, some don’t help at all. You really have to find what works for you and don’t do anything without your doctor giving you the green light. With all that being said, I’m always open to suggestions just don’t be surprised if I’ve tried it before.
What’s it like when you have a seizure?
It can be different depending on what type of seizure that I have. If I have a complex partial seizure, my vision blurs in my right eye for 10-30 seconds. Most of the time I can still speak and hear but I have to wait for the seizure to subside. If I have a grand mal seizure, occasionally I’ll get a forewarning which is called an “aura”. It’s like the brain’s alert system. Getting strong odors such as burning wires, dish soap, a sudden feeling of anxiety, fear, or a prominent metallic taste in my mouth. Giving me literally seconds, potentially a minute to get to a safe place or make a noise to let someone know that I’m about to have a seizure. Sometimes, I don’t get that much-needed aura and I simply lose consciousness and my body seizes for 2-4 minutes. Afterward, I typically sleep it off because a grand mal seizure can wear me out and my brain and body need that R&R.
Do you know when a seizure is going to happen?
The only time I can really get a sense of when a seizure might be coming is when I experience an “aura”, or that brain’s alert system. Beyond that, seizures are rude. They show up whenever and wherever they want. Whether I’m at home, out shopping, even visiting a friend. I know it sounds funny but, I’ve always got to be prepared to be caught off guard.
Do you drive?
I could if I wanted to, but I choose not to. I was driving my car when I had my 2nd seizure, which led to my epilepsy diagnosis. My license wasn’t taken away and doctors simply advised me not to get behind the wheel. I agreed with them. So long as I’m having seizures, I have no business being on the road. Quite frankly, after not driving for so long, I actually don’t miss driving. It’s great to be a passenger seat DJ and it definitely saves on gas!
What’s it like living with epilepsy?
It’s a thorn in my side but also a rose in my hand. I can never tell if a day will have more, less or zero complex partial seizures, and if my brain just so happens to be behaving, it feels as though I’m walking on eggshells to keep it that way. It’s good to have hope and faith. It’s good to be realistic too. When I have a stretch of seizure-free days, that is a vacation to me. I’m always holding onto hope that one of those stretches will be THEE life-long stretch.
Having a chronic illness truly does humble you. I was a very independent person before my diagnosis. A fair portion of me still is but I’ve learned many lessons over the years. Asking for and welcoming help with things that I’m not in the position of doing right now was a toughie at first, but I learned that it’s okay. Family are my greatest supporters and cheerleaders.
Admittedly, though I don’t like having epilepsy and seizures, I’m thankful to connect with people worldwide, who are affected by epilepsy in some capacity, through social media and in-person. It’s amazing that out of something so challenging I’ve been able to create lifelong friendships, advocate for epilepsy, write blog articles, and share my journey to help support and inspire others.
I think the biggest takeaway with all of this is that questions are good! By sincerely asking about each other’s circumstances we can build bridges and make strides to understand each other, which makes relationships and life in-general all the better.
I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!