Kristin and Nocturnal Seizures

This blog is about my friend Melanie’s sister Kristin.

I met Melanie at Kandu Summer camp and she ran the Respite program during my school years. Respite is like the Rose Club I attend now but it was for kids. We would go on field trips on most Saturdays, some sleepovers at the CAFCL office and lots of arts and crafts. The field trips were at the space and science centre in Edmonton, swimming pool in Edmonton, the corn maze. I did that for many years with CAFCL.  I remember going to the green house and I got to plant for my mom for Mother’s Day. 

Melanie stayed with me while my parents went on holidays. I often saw Kristin when I was with Melanie and Kristin was also an employee at CAFCL so I saw her when she was working.

Here is my interview with Kristin. Kristin had Nocturnal Seizures. Which are seizure’s that happen when you are sleeping.

Kelsey: What’s your favourite childhood memory growing up? Where were you born and raised?

Kristin: I grew up in a very small town called Daysland which is just outside of Camrose. Hmmm my favourite childhood memory…this is hard to pick just one, but I think the thing I enjoyed most about my childhood is growing up in a small town where my parents never had to worry about letting us roam the town on our bikes with our friends.

Kelsey: How did you find out that you were getting seizures?

Kristin: Back in April of 2016 (I was 26 years old) I had an episode where I could not talk for seven minutes. I knew words in my mind but for whatever reason I could not say them. I went to my doctor and was referred to a neurologist who booked an MRI. The MRI found that I had a tumour on the speech side of my brain. She ordered another MRI to get a better look at the tumour and before I got those results, I had my first seizure on August 29/2016 while I was sleeping. All my seizures have been nocturnal meaning I have them in my sleep and have no idea when they are coming.

Kelsey: What kind of seizures do you have Kristin?

Kristin: I have nocturnal Grand Mal seizures. Meaning they happen during my sleep and I shake violently.

Kelsey: How did Melanie and Ryan act when you were having a seizure?

Kristin: My first seizure actually happened when Adam and I were living with my sister and brother-in-law. Adam called up for Ryan and Melanie to come downstairs and they both helped Adam out. Thankfully, we were living with them because Melanie being a nurse was able to calmly help Adam through the situation and help him call the ambulance. Both Mel and Ryan have been a huge support to me.

Kristin: My husband is the one, who I believe, this has been impacted the most as he was the person who had to witness me having these seizures. I couldn’t imagine having to watch someone you love have seizures. We also had no idea when the seizures were going to happen so it’s not like he could prepare for me having one. He would just wake up to me having a seizure and help me.

Kelsey: Were you ever worried about your seizures and why did they happen?

Kristin: When I found out I had a tumour I had a moment where I cried but after that moment, I was 100% okay. I had many MRIs to keep track of the tumour and when it came to the point where the tumour needed to come out, I was okay. I only got a little nervous the day before the surgery, but I had faith that everything was going to be okay, 

Kelsey: Did you guys change your plans for the day when you get seizures?

Kristin: When I would have a seizure, I would have to call in sick the next day for work as I was extremely tired, disoriented and would often feel nauseous.

Kelsey: How are your kids and your family doing?

Kristin: Since my kids are both so young (3 years old and 11 months) they are completely unaware of what went on with my tumour/seizures. When I had my surgery my three-year-old was aware that I was in the hospital but didn’t fully understand the extent of what was going on.

Kelsey: What did you guys do with the kids when you went into the ER?  

Kristin: When I first started having the seizures, we would get an ambulance to come get me and take me to the ER because this was something new for us and we didn’t know how to navigate it. As time went on though we stopped going to the ER when I had a seizure because we knew how to handle the situation and what to do. At the beginning we didn’t have kids, so we didn’t need to worry about finding someone to watch them. By the time we had kids we were comfortable with handling them on our own and didn’t require going to the ER, so we never needed to worry about finding care for our kids. When I had my surgery in March our families helped us with our kids while I was in the hospital. I am the type of person who wants to know if something is happening and what we can do to fix the problem or manage it.

Kelsey: Do you want more kids? 

Kristin: We do not want more kids; we like man to man defence which is what we have right now.

Kelsey: Are you feeling ok today or still not feeling good?

Kristin: This tumour caused me zero pain. It did affect my speech so sometimes I would forget words or mix my words up. I had brain surgery on March 6, 2020 to remove this tumour as we were told the tumour was growing. So far I have had zero seizures since the tumour has been removed. The picture on the left is me the day of my surgery and the right is about 5 days after surgery! (My shirt says Straight Outta Brain Surgery!)

Kelsey: Did people ask you about your seizures and how did you answer?

Kristin: Other than my close friends/family no one knew I was having seizures because I never had one in public since they were all nocturnal. Any questions my family/friends had regarding my condition I happily answered. I also made sure that the people I worked with were aware that I did have seizures in case I ever had one while working they would know to call the ambulance.

Kelsey: What did your doctor do?

Kristin: I see a neurosurgeon at the Foothills hospital in Calgary. He orders regular MRI’s to be done and then shortly after the MRI I see him for a follow up appointment for the results.

Kelsey: Are you on any other medication for seizures?

Kristin: I am on a seizure medication called Keppra. I am hoping that I can eventually get off this mediation since the tumour that was causing the seizures has been removed.

I asked Melanie to share her thought’s…

Her first seizure we didn’t even realize she was having one. She had what was known as an aphasic seizure, where she forgot how to speak, and at the time I though maybe she was having a stroke. Seizure never crossed my mind. Her first grand nap seizure was when her, and her husband, were living with us. It was late at night, and all we heard was him yelling from the basement. My heart dropped. When we got down there and saw her, and heard Adam’s description of what had happened, I knew it was a seizure. We had called the ambulance at that time, and they took her in. I was worried as to what was causing the seizures, and how this would change her life, but I also knew that she was a force and her team behind here would crush whatever was found.

When we found out it was a mass in her brain causing the seizures, my worry did increase a bit. Working as an oncology nurse, my mind tends to go to dark places at times. However, once I was able to calm and rationalize with myself, I knew what the doc had said and what they had seen, the darkness was a very slim chance. So, we kept truckin’ along as she did. My worry was always there, she is my baby sister, but I knew things would be okay!

When they finally noted that the mass was growing (this was about four years after initial diagnosis) and it was time to remove it, we had made the plan that I would come and stay with the boys while she was in surgery. In hindsight that was not the best choice to be alone with no adults to talk to. My mind could not stop racing while she was in surgery. So, the call that surgery was done and successful came as a very welcome and HUGE relief.

Thank you Kristin and Melanie for letting me do this interview. I hope people understand what a seizure is now.


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