What is a seizure?
A seizure is a burst of uncontrolled electrical activity in the brain which causes temporary abnormalities in muscle tone or movements, behaviours, sensations, or states of awareness.
There are many different types of seizures, and seizures look and feel different for each person. Some general types are:
Absence seizures, which cause a person to seem mentally “absent”. They may stare off into space and seem completely unaware of their surroundings. Afterward they may experience confusion or feel unwell.
Myoclonic seizures consist of sudden body or limb jerks that can involve the arms, head and neck.
Tonic-clonic seizures involve convulsions, or full body movements, where the muscles in the body seize and jerk.
My personal experience
I am not currently diagnosed with epilepsy, but I did struggle with idiopathic seizures in my mid-twenties (idiopathic essentially means they don’t know how or why they started).
I had always struggled with my health, but was well enough to play sports and live an almost “normal” life, so nothing much was ever done about it.
In 2009 I started getting worse. I was exhausted every day, I could barely function. I was finishing up a degree in University and stopped attending classes. I couldn’t work.
I saw my doctor who figured I was depressed and put me on anti-depressants, but I continued getting more and more sick. I was still playing sports, but would push myself too hard and have fainting spells afterward.
Then I started having seizures.
At first they still seemed like fainting spells, but it was much harder for me to snap out of it. Then I had a clonic-tonic seizure in the locker room after a hockey practice. A clonic-tonic seizure is what most people think of when they hear the word “seizure”.
We used to call them “grand mal” seizures; they involve convulsions, or full body movements, where the muscles in the body seize and jerk. They often leave your body feeling sore and exhausted, like you just ran a marathon.
Afterward, not only did I feel sore and tired, I was also postictal. This is a common experience after a seizure, where a person feels confused, maybe nauseous, or has a headache.
Thankfully, my teammates were awesome. The two women who were still in the dressing room when this happened both had first-aid training. They put me in a recovery position and one stayed with me while the other went for help.
I woke up in the hospital having no recollection of anything that had happened.
Medical missteps
Unfortunately, being a young female with mental health issues and unexplained medical problems often leads to doctors and other medical professionals to assume one of two things.
Either you’re faking or it’s “just anxiety”.
That day, the paramedic who was waiting with me in the emergency department told me I hadn’t had a seizure. I have no idea how she would have known that, given she wasn’t actually present when I had the seizure.
After another incident where a friend brought me to a different emergency room, I had a nurse tell me I didn’t have a seizure, despite the fact that she also was not present when it happened.
I am fortunate and grateful my primary care physician was much more compassionate and competent and referred me to a neurologist, who confirmed I had in fact been having seizures.
This is determined by performing an electroencephalogram (EEG), in which a technician glues or tapes a lot of wires to your head. If you’re lucky (I wasn’t), you get one of the fancier ones and you don’t end up with a hair full of glue (I did).
The EEG monitors electrical activity in the brain, which is recorded for the neurologist to assess. I was given what’s called a sleep-deprived EEG: I was asked to stay up all night and then come for the test first thing in the morning.
I fell asleep during the test, which is common (hopefully I didn’t snore).
Most medical professionals already know this, but apparently the paramedic and nurse I encountered did not: One should never diagnose — or rule out — a condition when not qualified to do so, and when proper diagnostic tests have not yet been performed.
They were wrong and they could have discouraged me from pursuing further testing and finding out what was causing the seizures — because, as determined by a qualified neurologist, using proper diagnostics — they were.
Searching for answers
As I mentioned, I was fortunate to have a doctor who took me seriously and wanted to figure this out almost as much as I did. When he and the neurologist couldn’t find the cause of my seizures, they referred me to an Internal Medicine Specialist, also called an Internist — or on T.V., a “diagnostician”.
One of my in-laws is actually an Internist, unfortunately she lives in another province, more than two thousand kilometres away. She did call me and speak to me on the phone.
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