My name is Mary and I want to share my experiences with epilepsy with you. It took a few years to find the right treatment for me so don’t get frustrated if it takes you awhile too. I was around 12 when I started to get these funny feelings. Nothing I could really explain just something I knew was not right. At first my mom said it was sinuses and that it wasn’t a big deal. I started to get more of these funny feelings even at night waking me up from sleep. When my parents finally brought me to a doctor, the doctor looked at things you can easily test. I was tested for Mono, Anemia, Low Blood sugar and nothing ever showed up.
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.