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My story, lengthy but please read!

Thu, 05/24/2018 - 19:39
Epilepsy for “Normal” People By Jacob Schaar What is a “normal” person? Who decides who or what a “normal” person is? I ask this because when people find out I have Epilepsy, many times they say to me, “but you seem so normal.” I’m not sure if that is a compliment, or they just changed their mind about me, or if they think I need pity. I'll just take it as a compliment. *Epilepsy Facts: 1 in 10 people in the U.S. will have a seizure in their lifetime; 1 in 26 people will develop epilepsy. Nearly 3 million people in the U.S. have epilepsy, also known as a seizure disorder. 60,000 people in Minnesota have epilepsy, which is enough people to fill TCF Bank Stadium. Epilepsy is a medical condition that produces seizures. When a person has two or more unprovoked seizures, they have epilepsy. Epilepsy is the most common neurological condition in children, and the fourth most common in adults (behind stroke and Alzheimer’s disease). Epilepsy is a spectrum of disorders with a range of severities and seizure types. Seizures can happen to anyone at anytime, and in 70% of the cases, the cause is unknown. Epilepsy affects more Americans than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. *Epilepsy Facts provided by The Epilepsy Foundation of MN. In December 2001, I had my first grand mal seizure. Before that for as long as I can remember, I had petit mal seizures, more commonly known as absence seizures or dips. Before my first grand mal, I had no idea what these absence seizures were because the doctor just couldn't figure out what it was that caused these dips, and it never seemed an option that they were actually Epilepsy related. During a simple absence seizure, a person usually just stares into space for less than 10 seconds. Because they happen so quickly, it’s very easy not to notice simple absence seizures, or to confuse them with daydreaming or not paying attention. Absence seizures may only last a second or two, but they are the most embarrassing thing I have experienced. I still have them to this day, just not as often. It really got to a point where I didn't like to talk in front of people, play games, or put a lot of focus or pressure solely on me. It’s strange that a guy like me who loves attention can have such a huge fear of attention. But, for people that don't know what's going on when I'm talking to them and I just stop, it almost feels awkward when I “come back” and don't remember what I was talking about. Of course, I always tried to play it off like it was nothing. I still remember one time when I was pretty young, before I knew what an absence seizure even was, I was playing quarterback in football. I dropped back to make a pass, and the next thing I know, there's a guy running at me. Of course I had no other option but toss him the ball and watch him run it back for a touchdown. Playing softball also got embarrassing when I played in the outfield and a ball got hit to me. Whenever I watched the ball come down, it should have been a simple catch. But there was pressure to not drop the ball and throw it to the right person. Unfortunately, that pressure built up, and I would forget the first step of catching it. It's really hard to be so competitive, but then let your team down. As an athlete, you want nothing more than to work hard, and give it your all in hopes of someday making the varsity team. I started playing baseball, football and wrestling when I was young. From baseball all summer, to two-a-days for football, then on to wrestling; I worked hard and loved all three sports. I finally got up to varsity for football and wrestling. In football, I was a junior and in varsity wrestling, I was a sophomore. It was awesome! All the hard work and time that I put in, and I couldn't be more excited! And wrestling was our school sport, so to step out on the mat in front of your home crowd, with the spotlight only on two people was an amazing feeling. We went to school an hour and a half before classes started and we would just run around the whole gym, followed by some lifting and practice on our moves. Then the seizures came and took it all away. All my hard work seemed suddenly worthless. My time, dedication, and love for sports was gone. Early one morning before we started running, I was in the locker room, waking up on the floor with the paramedics around me, team around them, and all of them looking at me. It was the scariest moment of my life. I couldn't wrap my head around the fact that I had just had a major grand mal seizure. What was wrong with me? Why did this have to happen to me? They brought me to the hospital in an ambulance, but I still couldn't believe it. This couldn't be happening. Then the testing began. The doctor I had at first was a brilliant man, but I needed a specialist. I was on so many different meds, and couldn't get the levels right. I’d have another seizure, and they would increase the dosage. I still wrestled varsity, but with all the meds I was on, if I didn't pin the other kid right away, I lost all my strength and was winded in no time. My favorite sport now turned into a depressing time that I still look back and wonder what could have been. I can now say that I know I would have been an all-star, but wrestling for St. Francis means you’re wrestling in the toughest conference in the state. So, I guess we'll never know how well I could have done. I couldn't be quarterback anymore either, because my brain couldn't function fast enough for that position. I moved to defensive end; a lot more fun to hit the quarterback instead of being that quarterback who handed the ball off to the other team when the seizures began. I still played both varsity sports, but it just wasn't nearly as fun anymore. My senior year wasn't all bad. The teachers loved me, and I was awarded the most honorable thing one could possibly receive in school, and that is class clown. I graduated from St. Francis High School with honors. Shortly after, I went to a technical college. After a few months, one morning I woke up on the basement floor, and had the paramedics around me again. I had just had two grand mal seizures in a row. That night, my parents got me into the Minnesota Epilepsy Group, where I stayed in the hospital for the week while they got me on the right medication. This is where I met my new favorite person, Patricia Penovich, MD. She's the woman that changed my life. She helped me become a new me. I hope she knows that I am forever grateful. She's the one who got me on the right meds, with the right dosage. Unfortunately, my last three seizures only happened because I forgot to take my medication. After a few more seizures, I started to get used to waking up, people surrounding me, asking if I knew what day it was or where I was. One thing I never got used to, was the fact that I just lost my drivers license. It used to be for a year, but then I would go eight months seizure-free, have a new seizure, and then I had to start all over again. As a kid, losing my license was bad. But, as an adult that needs to get to a full-time job 30 miles from home, it's heartbreaking. It was extremely frustrating to have to rely on other people to drive me around, but nobody ever complained, and I never missed a day of work. It always reminds me of the Tracy Lawrence song, “Find Out Who Your Friends Are.” Let me tell you, I have been truly blessed with amazing family and friends! And I have been overwhelmed with people offering rides, anytime, and to anywhere. So many people willing to change up their lives and their daily routines just for me. I now have an awesome, beautiful wife and two of the best kids in the world. I’m not just saying that---they really are. Both so very smart with such sweet hearts. My daughter is in first grade, my son is in preschool. Naomi loves to read. She would read all night if we let her. It's kind of weird to go to her room at night, and tell her to turn off her flashlight and put the Bible down. My son Ethan, he's a riot. That kid’s hilarious, but the bad thing is that he knows it. They are both very smart children. It's so much fun to listen to them play together. They make me so proud. They both love art and singing. They obviously get that from their mom. I have been on the deacon board at our church for the last five years, which I really love being on. My favorite part of it is helping and praying for others. I get to work with the kids in Awana at church. Kids are the best, and it’s a blast watching them grow up. I work for an awesome company that has worked with me through my seizures. It's a very physical job. Most of the day I'm on equipment that goes up to 30 feet in the air. Epilepsy can't take over your life. I have to live my day-to-day without fear of what may happen. Don't let Epilepsy define you. God has really been with me throughout all my struggles. Without Him, I don't know how I could find light in any of this. But, I know without Him, none of this would be possible. There have been many times that I know God was watching over me, He took control, times that it was my turn to drive to school, but my buddy was driving and I had a seizure while he was going down the road. Getting ready for school one morning, five minutes later and I would have been behind that wheel. In the parking lot at the mall I had a seizure, I jumped out of the window ran across the lot and tripped on the curb, woke up bleeding with the ambulance on the way. My most recent seizure happened at work when I was working, I was called over to do some computer work, five minutes earlier and I could have been having that seizure hanging high in the air. I don't like strapping my kids in the car knowing that a seizure can happen without any warning. At any point, I know that I could lose control and put other's lives in danger. It's a terrible feeling, but I know God is watching over me. He always has. The purpose for me writing this is to show you that you're not alone. If this can help in any way; to let you know that Epilepsy doesn't make you abnormal, to help anyone dealing with depression, to even save one life, then my struggle with Epilepsy and sharing my story has been a success. Don't forget, God is always in control.

Comments

I'd appreciate feed back

Submitted by Jake schaar on Fri, 2018-05-25 - 00:00
I'd appreciate feed back

Oh Jake. I totally get you. I

Submitted by Gabrielagdq on Thu, 2018-05-31 - 09:51
Oh Jake. I totally get you. I've heard so many stories about people with epilepsy. Most of them, have had it since they're kids. It must be very tough to grow up having seizures. But I am on your side. I am 29, and until 2 years ago I had a completely normal life. I work in the automotive industry and was a successful proccess consultor of several car brands, with a promising future ahead.And then one day BOOM it was all gone.I had a grand mal that lasted 30 minutes. Well, now I know it probably lased 2-3 minutes but it took me 30 min to come back. My husband, who was with me thank God, poor thing, I had never seen him so scared. He was crying and calling an ambulance shouting at them to hurry up. They took me to the ER and all they said was that I was having a panic attack (what?)I tried to have a normal life the following days but I couldn't. I was dizzy the whole day. One week later, the same thing happened. 30 minutes again. They took me to the ER again and this time they took a CT which, according to them, came back clear and this made them think it was epilepsy. Just like that, in one week, I had epilepsy. I started seeing a neurologist which made me have an EEG (nothing happened on it) and a MRI. BOOM AGAIN. I had an arteriovenus malformation in my left occipital lobe which caused the seizures. The bad news, it's not likely to have a surgery because it's well deep inside, right on the optical nerve. I was on phenytoin and stable for a year until 2 months ago I started having partial seizures and bad non stopable headaches. I got traded to Keppra which is causing me severe mood changes and still having partials and last week I had a grand mal. So I'm probably uppering my dose which has me all worried because of the side effects.Thank God, my boss is awesome and totally supports me, however I had my tasks changed because before this, I had to be all around Mexico city every day in different car dealers, and now I cannot be traveling the whole day because something can happen. So, I totally get you Jake.It must be horrible to have epi as a kid. But having a completely normal life with huge future plans ahead and sudelly losing it all, sucks. It totally sucks. It's not fair to have your life taken from you this way. I am so pissed off that this changed so many things for me. I had a brilliant future ahead. I was susccessful. And now I am the person who cannot leave the office or the house without someone being there with her in case anything happens. I am the person who says "my head hurts" and immediately everyone says "Please don't have a seizure" Well, I learnt one thing. To never take things for granted. Specially health stuff.

Here is some feed backI hate

Submitted by Autotech2340 on Tue, 2018-10-23 - 21:56
Here is some feed backI hate it when people bring religion into well anything. I went to church for 15 years or so. Then I started to ask questions and got myself kicked out. If we are all made in God's image, why do i have seizures? Why does every body else have seizures? Why did I get stuck with epilepsy while my friends went off to college? There are other ways of thinking about this too, why did my mom get stage 4 cancer and only have 3 months to live. Where did my dad go? He disappeared. LMAO these are supposed to be tests? Tests for what? see how long we can live before turning toes up? What about tommy who had a stroke and now can't move the left side of his body? If everyone is made in God's image why is there sudden infant death syndrome? That book has been translated so many times in the past who knows how many years I'm surprised people still read it. If you have a sensible answer I would love to hear it. I was captain of the varsity hockey team, I played on two other travel teams. I got the magna cum laude from my school. I had a full ride through college, I even played on the Dallas stars practice squad, then one day it ended. And here I am 14 years later still struggling to make it through the day without having a seizure. I have cluster grand mal/tonic clonic seizures that last for about 7 minutes if if no one gives me my shot of Ativan. And my post ictl lasts for days. I have never had my driver license. Because my seizures started before I got it and now I can't. I'm very angry with God. Please if you have answers let me know.

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