Fast forward to June of the same year.  We were coming home from Bemidji…and I felt off the whole ride.  I just thought I was getting sick or carsick or something.  I’d later realize I was experiencing an aura.  That night after we got home, I experienced my second seizure…again a grand mal. I learned afterwards that it was one of the scariest things my parents and brother had ever experienced. Again, the passing out and ambulance ride and sheer confusion followed. It was recommended that I visit with a neurologist.

Enter Minnesota Epilepsy Group.  I remember my first EEG…I hated it.  And I hated my second too. But I also remember meeting Dr. Jason Doescher, I was impressed by how congenial he was.  How he could take all these hard to understand concepts and help explain them to a scared 15-year-old. And how he could tell me that everything will be okay.  I had epilepsy…and that came with a lot of rules and restrictions, but it was okay.  For someone who was learning how to drive, it didn’t seem okay when I learned I couldn’t do that for a while;  for someone who loved being on the swim team, it was hard to hear that swimming was probably the most dangerous sport I could compete in; for someone who was on the football team, but secretly hoped this would be my ticket off the football team, it was hard to hear that football was probably the safest sport I could compete in…but Dr. Doescher made it all okay.  And we went a few years, and everything was okay.

A few years later, we’d try to take me off my meds…and it didn’t work, so there goes the driver’s license…my senior year of high school no less…but I got right back on the meds and everything was okay.  But as I got older, I didn’t need a pediatric neurologist anymore…it was time to start seeing an adult neurologist.  I had to say goodbye to Dr. Doescher, who helped get me through the first three years of this journey.  But he was certain I’d get along with Dr. James White.  And get along we have! Except for the yearly requests to get my blood drawn…but we’re working on that!

College was hard for me; I’m not going to lie.  While it seemed like everyone else was out partying, I was afraid to do that due to the complications that might arise.  I was fortunate to find a few friends who weren’t into that scene and were cool about my epilepsy.  And it turns out when you can explain your situation to people, you know what, they aren’t going to pressure you into drinking like a fish, so by Junior year, I had a lot more friends at school than I ever thought I would.

And now at 28 years old, I consider myself fortunate.  My epilepsy was under control with the first medication we tried.  I haven’t had a seizure in 13 years. I haven’t had a close call in 10. I graduated college and made tons of friends.  I got a great job at a great company. I bought a house. I’ve been able to fulfil one of my lifelong dreams of being on the school board. I met a girl I love.  Epilepsy has gone from something that scared me to something I’ve learned to live with.  I’ve been lucky.  I see so many people out there who aren’t so lucky.  They struggle finding the right meds to control their seizures…or they can’t ever control their seizures.  I pray that someday everyone with epilepsy will find the right meds or some solution to their problem.  I pray that those in our community won’t live in fear of another seizure. I pray that everyone can be as lucky as I have been. I’m thankful for Dr. Doescher and Dr. White, for all the nurses and technicians, and staff at Minnesota Epilepsy Group.  I know I don’t speak on behalf of all your patients, but the work you all do is amazing, and you’re always there to help us out.

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Right before my senior year in high school, July 1996, I had a grand mal seizure. I was at my older brother’s for the week and my brother did not know about the funny feelings I had been having for years. The ER doctor didn’t have this history and he said I must have fainted and bumped my head which caused the seizure. Back at home following up, my primary doctor didn’t seem too concerned about this either. They did order the EEG and MRI testing as recommended by the ER doctor. My mom didn’t push to get the results even though I asked her about it all the time. I was at the Perpich Center for Arts Education for my senior year in high school. After the grand mal seizure I still got the funny feelings and they seemed to be more frequent. I started working with the Health and Wellness Counselor at school and with her help I was able to see a doctor, finally find out the results of the EEG and start a medication. Six months after the grand mal and years of having auras I was diagnosed with epilepsy and started a new journey to find the best treatment.

Through college and years after college I worked with my doctors to find the best treatment. I think I was on just about every medication possible and dealt with numerous side effects. Around 2004, the neurologist I was seeing mentioned that surgery could be an option. They were not ready to look at that yet, but he wanted to let me know about that option so I could be prepared if it did come to that. At that point there were still medications to try. In 2006 I had to change clinics due to insurance changes. The new doctor I was with for a year didn’t seem to get what I was dealing with. Her goal of 0 zero seizures was great but it came at the expense of overmedicating me. In the year that I was with this doctor the seizures were not stable since she kept changing my medications. Through this experience I learned that it is best to stay with a medication treatment long enough to give it time to work. Changing to a new medication each month does not give enough time to see if it will help you. It wasn’t really a new medication each month, but it felt like it since I was having the small particle seizures all the time. Also the doctor you are with needs to understand your type of seizures. My options were to be over medicated to achieve 0 seizures a month or realize that I may have a few break through seizures with the goal of keeping them small.

In 2007 I started seeing a doctor at Minnesota Epilepsy Group. I was glad to find a doctor that seemed to understand what I was dealing with. The summer of 2011 the number of seizures 1 increased. They were still small particle non loss of consciousness, but I was having 1-2 a week instead of 1-3 a month. When I saw my doctor in August I could tell she was frustrated. Things were not changing enough to warrant more testing, but something was going on. In September 2011, I had another grand mal seizure. That was the prompting we needed to get me in for more testing. In October 2011 I was in the hospital for intensive video EEG testing. A seizure was finally recorded on EEG, up to that point I had never had an actual seizure recorded. The week in the hospital recorded enough testing to show that surgery could be an option. My case was reviewed by the group that reviews surgery candidates and I was approved to have surgery. In January 2012 I had a Right Temporal Lobe Resection, meaning the trigger spot was cut out.

Since then I have been seizure free and able to lower my medications. I had been on really high doses of two medications and I have been able to eliminate one all together and lower the other one.

Encouragement to others – realize it can take time to be diagnosed as well as find the right treatment. Don’t give up after trying one medication, realize that it may take trying a number of types to find the right treatment. Be sure to honestly communicate with your doctor on what is going on. They can’t help you to the best of their ability if you do not speak up and tell them what is going on. If the medication has weird side effects tell the doctor. You can work together to find the best treatment for your case.

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