Why was I having severe headaches and seizures? My Diagnosis Surprised Me

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Around 20 years ago, I woke feeling sick one morning when I was in the second year of my teaching career. I was about to ask for a substitute when I felt dizzy. The next thing I know, I was lying on the floor. My husband told me that I had a seizure, and he called 911. My arms and legs moved, but I was unconscious the entire time. I was so terrified–I didn’t know anything had happened.

The doctors at the hospital examined me and told me I was fine. They sent me home because they thought I was sick (since I taught second graders, there was always a virus or flu going around).

It became a habit

Six months later it happened again, but this time I was alone at home. I felt dizzy, nauseous and then woke up in the middle of the floor. I called 911 and got to the hospital. They said, “Okay now we have a pattern.”

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I had not felt sick prior to this seizure so they knew that it was something else, but didn’t know what. I was referred by my doctor to a neurologist, and began getting tested for every possible condition. They checked to see if I had a heart problem, a brain tumour, diabetes or hypoglycemia. They even tested me to see if I had lupus. It was so discouraging. I kept hearing “Your test results were normal,” but I kept saying, “But this isn’t normal!” I was terrified as I had no control over my body and no answers.

Not just one, but two diagnoses

This continued for three years. My doctors were still trying to determine what was causing my seizures and which medicines would work best for me. I was always tired and felt like I wasn’t who I wanted to become. I was sent from specialist to specialists, and it felt like no one shared notes. My biggest fear was having a seizure right in front of students. Thankfully, this never happened.

I was then admitted to Barnes-Jewish Hospital, St. Louis. I stayed there for a full week, under observation. They tried to induce a seizure through adjusting my diet, preventing me from sleeping, and even flashing lights. The doctors confirmed I had epilepsy. A diagnosis changed my life. We could create a plan, and I could begin to live better.

The neurologist from Barnes-Jewish suggested that I see a headache specialist as I had terrible headaches ever since I was an teenager. I was diagnosed with migraine and now take two pills, one antiseizure medication and a monthly injection Aimovig to reduce migraine attacks. I’ve only had one seizure over the last 16 year period, which happened on a day when I forgot to take my medication. Some triggers, such as hormones and weather, I cannot control. However, I can control other factors, such as getting enough sleep and eating regularly. Migraine Road is a blog I started to help other migraine sufferers.


Lindsey De Los Santos

I’m now married to an amazing guy and we have two active sons. I teach fourth-grade, and my students have been wonderful. We discuss my health at the start of the school year and have a plan for what to do in the event of a seizure. They have big hearts. I spent years searching for the answers. I’m glad I didn’t give up because I wouldn’t have the life I have now.

What is epilepsy?

Around 3.4 million children and adults in the U.S. suffer from epilepsy. This chronic condition is diagnosed when a person experiences two or more unprovoked seizure. Seizures result from asynchronous brain activity, which manifests as involuntary movements or “spacing-out” or full-body convulsions.

Pooja Patel M.D. explains that seizures can be caused by many other things, such as alcohol, drugs, infection, or electrolyte balances. “But if someone has two seizures without a known cause, it may be diagnosed with epilepsy.”

In some cases, epilepsy is traced back to genetics or brain injuries, but in most cases, the cause is unknown. Stress does not cause epilepsy but it can lower the threshold of seizures in someone with epilepsy. Other triggers include lack of sleep and flashing lights. Researchers are still trying to find a link between migraine and epilepsy. However, many people with epilepsy — especially young women — also suffer from migraine.

Antiepileptic drugs are the first line of treatment, and they control seizures in seven out of ten patients. Other options include surgery, the ketogenic diet or implanted neurostimulation device.

Seizures symptoms