I had my first seizure just before my 13th birthday at a friend’s birthday party while jumping on a trampoline. Even though this was my first seizure I grew up around epilepsy as my dad also had epilepsy. I was referred to a child neurologist and was diagnosed with epilepsy. I was given medication but didn’t take things seriously. I would typically have a seizure every year and a half or so, so it didn’t bother me especially being young and foolish.
Things started to change just before my 16th birthday. That was when unfortunately, I lost my dad to SUDEP. After that my seizures increased in frequency and severity. With that I then started seeing a neurologist who had just moved to Kingston who was wonderful. Even with her assistance we had a hard time getting my seizures under control for a long period of time. We tried various medications and it took several years to get my seizures under control with medication (even then I wasn’t the best at adhering to my medication regimens).
After a couple of years of controlled seizures, I had some intermittent seizures.
As I approached 30 my seizures really started to become much more uncontrolled. My neurologist tried various medications, tests, and treatments. Through this time frame I was lucky to have the support of a loving wife and family who were by my side through the ups and numerous downs and the time I spent below the ice level of the iceberg that is epilepsy.
I also started to use some of the great resources available from the Epilepsy Resource Centre of South Eastern Ontario, through the monthly support meeting I listened to many great guest speakers who offered great advice and gave insights into new potential treatment options to discuss the pros and cons of with my neurologist. I also was provided with ways to better communicate how I was feeling when my epilepsy had me feeling down or that things wouldn’t get better. Most importantly to myself and my family, the Epilepsy Resource Centre gave my wife and I important information about how to speak to my daughters about my epilepsy without trying to scare them too much.
It has now been almost 3 years for me without a seizure now. I have fully regained my drivers license and feel the best I have in years both mentally and physically. The Epilepsy Resource Centre of South Eastern Ontario and other Epilepsy Resource Centres through Ontario work together to provide education and support to those in need. I have used their resources and found them to be invaluable.
To support folks like Dan, please visit: https://www.canadahelps.org/en/dn/13841