A Case for SUDEP AWARENESS – A Guest Blog by Nadine Bonnett

I’m going to be sharing a recent experience I had with a seizure in early September.  This is a heads up for everyone out there who has seizures.  After this seizure on September 6th, I awoke with the usual battle scars, but I was not yet aware that during the seizure I tried removing my t-shirt.  When I found my t-shirt later, I saw that there was blood and handprint on the back.  I took the t-shirt to an appointment with my neurologist for his thoughts and his conclusion was about the same as mine:  During the seizure I had tried to remove my t-shirt, and had twisted it around my face, which would explain the blood and handprints on the back.  I am lucky I’m sitting here now offering up this word of caution, as I came very close to having choked myself to death.

I’m now wearing a heart monitor to see what has been going on when I sleep and am planning for an MRI at the Foothills Hospital Epilepsy Clinic.  During my visit, my neurologist noted that I am one of about 10% of the people for whom medication does not work; I have tried many medications.  My neurologist is now considering surgery to control my seizures.

At this point in my life, I have everything to gain and nothing to lose.  I have every bit of faith in the specialist.  I’ve been blessed with one of the best neurologists in Canada so I’m feeling safe and have no doubts.  I did have a meltdown moment when I realized (as I suspected) that I had come so close to death.  So please – make sure you are not going to bed in clothing that can smother or choke you if a seizure were to occur during sleep.

If you find evidence on your clothing that something happened, show it to your doctor so the he or she is aware of what has happened.  And please take time to learn about SUDEP and report changes or incidents, such as this, or anything out of the ordinary, to your neurologist!  Finally, make sure your family and friends know about your epilepsy, SUDEP, and any risks that may affect you.  If I can save one life with my story, then ‘coming out’ will have been worth it!

I have struggled with epilepsy and seizures that are violent and nasty, but am relieved to be getting great treatment and support from my medical team, headed by Dr. Agha Khani.  Going forward, I am looking ahead to the future.