Emily C. Shares Her Epilepsy Journey

February 23, 2022
Personal Stories

As part of our ongoing interview series, we connected with Emily C., one of our Neureka® users, to learn about her epilepsy journey and help raise awareness.

Meet Emily C.

I was diagnosed with epilepsy a couple of months before I turned seventeen years old. I had been having déjà vu feelings for about a year, but I had been told by three different doctors I was making it up to get attention. I was found convulsing and had a generalized seizure when I fell asleep on a couch in the same room as my mother during August of my senior year of high school. We were then told I had been having seizures during the previous feelings. 

Both of my parents cared about my health greatly, but my mother was the one who looked for a doctor who was able to help with my seizures. The first medication I was put on we found out I was allergic to. The next medication I was on caused me to gain forty-five pounds in only six weeks and my hair was falling out.

After having been diagnosed with epilepsy for slightly over a year, my parents wanted to try and see if there was anything that could be done to reduce the seizures since the medications I had already been on did not reduce them very well. We were told at Johns Hopkins in Baltimore, Maryland, that surgery was an option. I was to have an EEG put in from a surgery and after ten days they would do a resection. After three days with the grid implanted a couple of seizures originated on the opposite side of the brain and the resection was canceled. The grid was removed the next day and I was told surgery was not an option anymore.

I was then put on other medications and was in several studies through the hospital for new seizure medications before they were available for prescription in the United States. Then my mother had looked into some things and read about the Ketogenic Diet. I was told I was too old to do that diet by the doctor I had at that time. Then the doctors at that hospital agreed that they would give me the option to try the Atkins Diet for a couple of months, and if I was able to remain on it, I would be permitted to go on and do the Ketogenic Diet. After a couple of weeks of the “Modified Atkins Diet,” my seizures had started to reduce greatly. 

The doctor at Hopkins decided to tell me to stay on that version of the diet for a while to see how it did before having me change to the Ketogenic Diet. I was to fax them every week what I ate, the amount of water I drank, my exercise, my current weight, ketone level, seizure activity, and other items. The diet helped greatly and the doctor at the hospital who did the diet for children signed the book for me and wrote in it, “Wow! Congratulations! You are our first on the Modified Atkins Diet—hopefully not our last!” I then had to come off of the diet due to what it started to do to my cholesterol after I was on it for about four years.

My seizures at that time occurred a lot during hormonal times and my mother took me to another doctor who specialized in them at a hospital in Philadelphia, Pennsylvania. I was then told brain surgery was another option. I went ahead and tried surgery again and had part of my left temporal lobe and hippocampus removed. It helped reduce my seizures to some degree, but I now have memory issues and do not remember what has occurred for about two hours before and two hours after any seizures happen. I was put in other studies with new medications at that hospital, but the seizures still continued while taking medication as prescribed.

I found out about service dogs for epilepsy seizures and applied for one at a certain non-profit location. I was put on the waiting list for a while and then I went to a camp to receive a dog with my mother in May of 2008. The camp was with other people who were receiving service dogs for other reasons. It was a two-week camp and my mother and I had been there a few days when something occurred while in the class. All of us were receiving dogs and the staff were in a large room, and one of the dogs had started barking. I did not know any of that was occurring, and I had just moved from sitting in a chair to sitting on the floor because a seizure was getting ready to occur. I did not know it, but the dog whose name was Callie had already come over to me. This was because she had detected ahead of time that I was going to have a seizure. She was the dog I received from that non-profit location after a two-week camp. Callie allowed me to be able to sleep in a room by myself because I still lived with my parents. She was a golden retriever and black lab mix.

It was amazing what Callie was capable of doing. We had to say goodbye to her in 2020 and it was tough. She was a couple of months shy of turning fourteen years old. She was with me everywhere I went and it did not matter if I was with my parents, husband, or another person—she was always with me. Therefore I was asked every time I was seen in public after we had to say goodbye where she was and it was tough to answer, but I would somehow manage to. 

Callie would always stay in her kennel while I was at work unless she needed to go outside, it was lunch time for her, or if I was giving her a drink of water. I worked at a retirement center, and one time she started barking at the lady who I shared the office with. The lady thought Callie just needed to go outside, but what Callie was actually doing was trying to let her know I was at another location in the building having a seizure. She took that lady to a certain stairwell in the building where I was at and the lady opened the door and followed her. The lady then found me there having a seizure. How she was able to know where I was and that I was having a seizure I am not sure and again I do not know if I would have ever believed that if I had not received her. I was asked by the foundation if I wanted to apply for another dog, but I said I did not since I felt there would never be another one like her, as in her personality. I also told them I would rather another person receive one as for me taking another dog considering I am now married.

I thankfully met a man in 2010 who accepted me with having epilepsy seizures. After being together for a while he asked me to marry him and we have now been married for almost eleven years. He is willing to do anything for me and take me anywhere considering I am unable to drive because of the seizures. It was hard to believe I met someone who accepted it considering another person I had dated decided they did not want to be in a relationship because of the seizures I had.

After receiving the Neureka® watch in January 2022, my husband and my mother felt good about me having it considering my late service dog would get one of them if I were in a different room having a seizure and unable to let them know myself. With Neureka®, I could easily send them a message if I were to have one while in a different room or a slight distance away in the yard or another place where someone with me would be. It may allow me to have a bit of independence again as I had with the service dog who was always with me.

Previously, I would always try to have an ink pen beside me at home or use my phone while in public to write the information pertaining to any seizures that were to occur since I would not remember they occurred later that day. My husband also tries to keep track of the seizures when they occur. With Neureka® I can now push a couple of buttons to make the information and also contact the other person I need to at that time to let them know about it occurring. The information will all be there and together for when I need to check when my recent seizure occurred, or if I may need to track what may have caused certain ones. I will also easily be able to access the seizure history when I am to see my neurologist in person. 

I would like to say I am thankful for what I am able to do and more than thankful for the family I have. I have learned since being diagnosed in 1999 to be thankful for what I can do and never give up even though it may get challenging at times.

-----

Want to share your epilepsy journey with us? Email us at hello@neureka.ai

Newest Posts