TammyMy name is Tammy, and I live with a seizure disorder.
I have something called functional neurological disorder, and as a result, I have functional seizures. Functional seizures look like epileptic seizures, but they do not occur due to abnormal electrical activity in the brain. Instead, they stem from a problem with the functioning of a person’s nervous system. For example, they can be a physical manifestation of repressed trauma.
For 17 years, I lived with a barrage of symptoms that looked like multiple sclerosis. Before my doctors told me they thought it was multiple sclerosis, I saw over half a dozen specialists; had a dozen MRIs; had a spinal tap; went through muscle testing; had two nerve conduction studies; and was tested for Lyme disease, lupus, HIV, Lou Gehrig's disease, primary lateral sclerosis and Tay Sachs disease. Just over a year ago, I started having little tremors. They wouldn’t last very long, but they got progressively longer and progressively worse. So, I was tested for epilepsy. But my EEG was completely normal.
One morning, I woke up and I started to have an episode. This time, it was a bit different – I could talk, but I wasn’t speaking English – it was more like baby talk. I was fully conscious: I could hear everything, I could see everything, I could understand everything – but English wasn’t coming out of my mouth. My husband called the paramedics because we thought I was having a stroke.
I was taken to the hospital, and they gave me a CT scan. And they said it was not a stroke.
The neurologists pulled my MRI history, and that’s when they diagnosed me with functional neurological disorder. Functional neurological disorder is a condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals. So it’s like a software problem in a computer. Functional seizures are the connection between past trauma and how it manifests itself as a physical symptom, which is a seizure.
Fourteen months ago, I was having two or three functional seizures a day.
Then, my psychiatrist referred me to Epilepsy Toronto because he knew the organization offered support for functional seizures. After working with Epilepsy Toronto, the seizures are completely under control. I have one seizure about every five to six weeks.
People who have faced trauma think it’s difficult to talk about it because they relive it. But I’ve learned it’s actually better to talk about it, get it out there and deal with it, instead of packing it up and burying it.
My biggest piece of advice while on this journey is to listen to your body and find people in your life who you can be yourself with. Learn to say what you need and how you feel. And don’t be embarrassed by your seizures because people are far more understanding than we give them credit for.
*stories have been condensed and edited
Learn more about Epilepsy Toronto's Functional Seizures Services here.