Seizures suck. Ask anyone who has had them.
Last September marked 15 years without a single seizure for me without any anti-seizure medication. April 1, 2008 was the date of my last seizure. I began to take Tegretol later that month and had not had a seizure since starting the drug. I still felt awful, had horrible digestion, and lost over 120 pounds in a 9-month period.
This was all after my 3rd child was born. During the previous pregnancy, I felt pretty good. Afterward, I began losing weight rapidly, I was not digesting my food, and every time I ate I felt like I had been punched in the stomach. The doctors were at a loss to the cause. Some guessed a form of postpartum depression. I knew it was not that.
Then the seizures began.
It was in the middle of the night in early 2007. My husband woke me up and said, "We need to go to the hospital." I was confused, and really tired. I was confused because my husband hates hospitals and would do anything to avoid them. I was really tired because I had just had my first grand mal seizure.
Thankfully, I went. My husband was scared enough to grab my phone and call all my friends, trying to find one awake at 3 am and ask them to watch the kids. They were 8 months, 2 years, and 5 years old.
After dropping the kids off at my friend Amber's house, we headed in. They did scans and found nothing abnormal, thank God. "If you did have a seizure...," they started the gaslight. My husband knew what he saw, but that didn't stop the medical system from doubting him. He had seen the same thing years before in the mall food court when someone fell down and seized. He remembered being very frightened.
They sent me home with a brand new anti-seizure drug, which is now off the market. It caused suicidal ideation and within the first two days I stopped taking it.
The prescribing doctor was indignant. "You need to take it, you had a seizure." When I refused to keep up with the drug, he sent in the paperwork to the DMV to revoke my licence. When I got the paperwork in the mail that I was to surrender my licence, I knew it was in retaliation of me stopping that drug.
I spent the next few weeks recognizing other symptoms. The "dizzy" spells my primary doctor prescribed anti-vertigo medication for were actually absence seizures. I was terrified at the thought of what could have happened if I had had a grand mal seizure behind the wheel with my kids in the car. Now that I knew what they were, there was no way I was driving anyone anywhere, licence or no licence. The doctor "taking" my licence in retaliation for not taking a drug that he was most likely getting a kickback from prescribing, was laughable. Dismissing my sudden and severe reaction to the medication was not funny in the least.
That is when I decided to fire my neurologist.
Then God brought me an angel of a doctor. She and her office were compassionate and caring. Even though she didn't find anything wrong on the EEG, she agreed with my husband that what he described was indeed a seizure, and the fact that it happened in sleep was an even bigger indicator that it was so.
Before I met her I had a total of 9 grand mal seizures, and hundreds of absence seizures, sometimes as many as 4 a day. One time I was writing at my desk in the early morning hours after my husband left for work. Next thing I knew, I was on the ground with my face two inches away from the filing cabinet, with a nasty bump on my head. The groggy feeling told me the unwelcome truth. I had just had my first daytime seizure.
As the seizures were getting worse, I waited for my appointment. She put me on a well traveled drug named Tegretol. This drug had zero side effects for me at first.
After just a few weeks my daytime seizures diminished, and my nighttime ones stopped altogether. During his time my mom, who was a nurse and a pretty good researcher herself, told me about celiac disease. She said, "seizures are a rare complication, but they can happen." That was enough for me to try the treatment, which is the gluten free diet.
It was June of 2007, and my family orderd me a flourless cake from Whole Foods. After I ate the dairy-rich "cake" I had one of the worst absence seizures ever. I then cut out dairy too.
That is when things really started to change.
I was two days in and a friend said, "You look different, there is color in your cheeks again." I had more energy, and the seizures had all but disappeared.
I went another few months on the diet, and on the medication, not sure which was giving me the most success. That is when I got my latest bloodwork back, my blood counts, all of them, were bottoming out.
Because of this in September of 2008, my doctor said we needed to try something else, I said, "Can we try nothing?" She shrugged and rolled her eyes. She expected the seizures to return, but she aergreed to try.
"Can I have my driver's license back?"
I had been seizure-free for almost 6 months. I had hoped to gain my freedom back.
"Uhh, no."
I hoped the answer would be different, but expected the refusal.
I felt so much better not eating wheat that I refused to reintroduce it into my diet so I could be tested for celiac disease. I had little to no "auras" which those with seizures sometimes call the warning sign that a seizure is coming.
Now it is 2025. I have been seizure-free and medf-free for over 15 years. All of those three little children are adults now. We ended up adding to our family and have a wonderful and talented teen that our lives would not be complete without.
I am extremely greatful to have been given a chance to see my children grow to adults. Challenge after challenge, God has sustained us and even helped us thrive.
I know not every mom gets this chance. If you are going through a loss of a family member, or are going through a life altering illness, know that God is there. He loves you and is working.
He is even working when you become homeless, but that is another story. ;)
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