Epilepsy Awareness Day: My Story

Jillian Enright

My personal experiences with seizures and idiopathic epilepsy

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. After a short phone call, Dr.-Sister-in-Law suggested I be tested for Celiac disease.

I had very low iron, which can be caused by malabsorption, an issue in Celiac where the body is less able to absorb nutrients from food. Unbeknownst to me, Celiac can also cause neurological symptoms in some patients.

The longer a person’s body is being deprived of essential nutrients, and the longer a person’s body is being stressed by untreated Celiac, the more likely they are to exhibit neurological and extra-intestinal symptoms (extra-intestinal simply refers to symptoms that are not GI-related).

Some non-GI Celiac symptoms which can be treated with a gluten-free diet are:

  • Poor growth
  • Anemia (low healthy red blood cells)
  • Elevated liver enzymes
  • Arthralgia (stiff, sore joints)
  • Decreased bone density
  • Dermatitis herpetiformis (DH, a skin condition)

I had 5 out of six! Despite being considered lactose intolerant (which I actually wasn’t, it was just another Celiac symptom), I did not have decreased bone density.

Unfortunately, the Internist was just as dismissive as the paramedic and nurse had been. He said my low iron was due to not eating enough meat, despite the fact that I was an athlete and had quite a healthy, balanced diet.

According to the doctor, my short stature was due to being born prematurely, even though my immediate family are all tall. My joint stiffness and pain were from playing sports, and my rash was eczema, not DH.

Sigh.

Hide and seek

Thanks to my attentive PCP, and knowledgeable SIL, I got tested for Celiac anyway. The blood test came back positive. What that means is I had elevated Transglutaminase (tTg) IgA antibodies because my body thinks gluten is a foreign invader to be attacked.

A normal tTg IgA level is 15–20 U/mL or less (depending on which type of test is being used), whereas mine was above 75 U/mL. On this particular test, anything above 25 U/mL is considered a clear positive.

When the immune system mistakes gluten for something against which it needs to defend, the antibodies inadvertently attack other areas of the body as well.

In order to confirm the diagnosis, I also had to undergo an endoscopy (not a colonoscopy). For Celiac, the test is in the upper digestive tract, which include the esophagus, stomach, and small intestine.

The doctor guides a flexible tube down the patient’s throat and into the small intestine, then takes several biopsies (tissue samples) to test for damage to the villi which lines the small intestine.

For children and anxious adults they are usually sedated. My doctor was old-school so I was wide awake the entire time. It was not painful, but the endoscope triggers the gag reflex, so I was choking and gagging the entire time — which was about 20 minutes.

Please note, this was in 2009 with a doctor who was about a day away from retirement. What I’ve been told from fellow patients is these procedures tend to last 5–10 minutes and most patients at least get anxiolytic medication, such as a benzodiazepine.

The good news

The good news is once Celiac is identified, it is usually easy to treat with a gluten-free diet. That’s it. I was diagnosed in 2009 when it wasn’t quite so easy to find gluten-free (gf) replacement foods, and it felt nearly impossible to eat fast food or dine in a restaurant.

Nowadays it’s much easier, there is much greater availability of “health food” products and gf foods, as well as menu options in restaurants. It’s always a risk dining out, however, as someone could easily make a mistake and accidentally cross-contaminate your meal with gluten.

For someone with Celiac it may only take a toast crumb to make us sick. I have been faithfully gluten-free for almost 13 years now. I have zero eczema, my asthma is much better controlled, and I haven’t had a seizure in 12 years.

Although I am fortunate to have put this behind me, many are not so lucky. Many people still suffer with seizures on a regular basis. If you are interested in learning more, please visit PurpleDay.org.

If you’re able to donate, please research a reputable charity in your area, or donate to Epilepsy Canada.

© Jillian Enright, Neurodiversity MB

References

Abood, W., & Bandyopadhyay, S. (2022). Postictal Seizure State. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK526004

Laurikka, P., Nurminen, S., Kivelä, L., & Kurppa, K. (2018). Extraintestinal Manifestations of Celiac Disease: Early Detection for Better Long-Term Outcomes. Nutrients, 10(8), 1015. http://dx.doi.org/10.3390/nu10081015

McWilliam, M., & Al Khalili, Y. (2022). Idiopathic Generalized Epilepsy. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK546611

Patel, B., Wi, C. I., Hasassri, M. E., Divekar, R., Absah, I., Almallouhi, E., Ryu, E., King, K., & Juhn, Y. J. (2018). Heterogeneity of asthma and the risk of celiac disease in children. Allergy and asthma proceedings, 39(1), 51–58. https://doi.org/10.2500/aap.2018.39.4100

Triantafillidis, J. K., Merikas, E., Nikolakis, D., & Papalois, A. E. (2013). Sedation in gastrointestinal endoscopy: current issues. World journal of gastroenterology, 19(4), 463–481. https://doi.org/10.3748/wjg.v19.i4.463

Trovato, C. M., Raucci, U., Valitutti, F., Montuori, M., Pia Villa, M., Cucchiara, S., Parisi, P. (2019). Neuropsychiatric manifestations in celiac disease. Epilepsy & Behavior, 99, 106393. https://doi.org/10.1016/j.yebeh.2019.06.036

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Neurodivergent. 20+ years social work and psychology experience. I write about mental health, neurodiversity, advocacy, education, and parenting. Founder of Neurodiversity MB. CYW, BA Psychology.

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