Tracey & uncontrolled seizures
Meet Tracey who lives with uncontrollable seizures and has spent years fighting to get the right support for her epilepsy. Read her inspirational story below.
Tracey’s epilepsy story
As a baby, I had Roseola which caused me to experience febrile seizures. By the time I was 5 years old I was having auras. No one would really know what was happening and the only way I could describe it was a ‘funny feeling’ - my doctor put me on medication during school.
In the 7th/8th grade I was sent to Cleveland Clinic for 7 months. I was having 20 seizures a day! Following some investigation, it was clear that the medication I was put on was giving me seizures. I still experience seizures now, but not as many. I have lots of auras - sometimes they develop into seizures, sometimes they don’t. All the doctor’s in my area have given up on me. Now, I see an epilepsy specialist who said they can’t really do much more for me.
Read more: What is an aura in epilepsy?
The determination to learn
Unfortunately, seizures really affected my school work. One of my triggers is stress so at school I would study for hours, get stressed out by the work. I would have a seizure and forget everything I had studied. The doctor’s recommended I drop out of school at 16, as the stress was too much for me. I am pretty stubborn and determined, so I persisted by getting extra tutoring help.
My dream was to work in a nursing home. In school, they evaluated me for nurse aid training and said the only way I’d be able to do it was if my seizures were controlled and my reading level improved. I tried everything. I had brain surgery and I even did a GED course to improve my learning average. Sadly, it didn’t work and something told me it isn’t what God wanted me to do. However, I did graduate high school and I even received a $500 award at graduation for exceptional achievement. I now volunteer at a nursing home instead!
I got a job at a cafeteria, but it got hard when I began to forget where things went due to post-surgery memory loss. In 2010, my seizures were occurring every 2 weeks. I knew it was something to do with my menstrual cycle, and my doctor would not believe me. I was then diagnosed with terminal colon cancer and had a hysterectomy, it was an intense procedure and the doctor’s said it was a miracle that I lived!
Dealing with her seizures
My only family was my church group and my husband. I also just started attending a support group on Zoom, which is great. I love chatting with people, I feel I can relate to people at the support group, and I can give advice to help them - I really enjoy helping others! The doctor’s also make me go to counselling to ensure I am dealing with any stress to control my seizures.
Find out more about how to find epilepsy support groups.
Experience with the Epsy App
I use Epsy to keep track of my seizures, I have to keep a journal of these to take into my doctor’s appointments. Epsy lets me note down what type of seizure I had and any details to make sure I remember to share this with my doctor.
I love to walk, it really helps me manage my stress and I find it relaxing! The cancer doctor told me that’s what saved my life. I try to walk 5 miles a day - my husband does worry I will have a seizure, but the community is helpful and someone will always stop and stick with me if I feel an aura and a potential seizure is coming on!
Can you exercise with epilepsy? Find out more here.
Tracey’s advice to others
Make sure you have a doctor you trust and one that believes what you tell them. My last neurologist wouldn’t believe I was having seizures as nothing he was doing would work, he said I was faking it and manipulating people! That really destroyed me, it’s so important to have a good doctor that listens.