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It’s been almost four years since I was diagnosed with Narcolepsy. I was always tired, and so my doctor had me do a nighttime sleep study to test for sleep apnea. When I arrived at the sleep testing center, I had to fill out a lengthy questionnaire about my sleep habits. One of the last questions talked about sleep paralysis. Just then I had a flashback to a time that recurred often as a child through adulthood—I lay in bed, looking at my room in the dark. I can’t speak, I can’t move, I can’t scream. I try so hard to scream out or move just a little bit, but it’s as if a ghost were holding me down.
I buzzed for the sleep technician and asked why on earth they would ask me such a question. The technician replied that it is a huge sign of narcolepsy. My entire life started to make sense at that very moment.
When I was little, I would sleep for fourteen hours, be up for a few hours, then want to go back to bed. I would go to the nurse’s office nearly every day because I was tired, didn’t feel well, and wanted to take a nap. I missed so much school, and would spend my study halls asleep on the couch in the library. I could nap anywhere–in fact, I slept through a tornado while on our way through Kansas on a family vacation.
After the nighttime sleep study, they decided that based on my results, I definitely didn’t have sleep apnea, but they wanted to do a day time sleep study, called an MSLT. I would arrive early in the morning, take a nap for 20 minutes, be up for a few hours, take another nap, and repeat this cycle several times. Each time, I fell asleep within just minutes, but I had no idea I was even asleep. I thought I was just looking around my room. I had even dreamed the sleep technician brought in breakfast for me and turned on the light…then all of a sudden, she really did turn on the light and brought me breakfast.
The doctor interpret ted the results and referred me to a pulmonologist for narcolepsy. I still haven’t figured out yet why a pulmonologist is considered a sleep doctor, but I digress. I was on several different medications, and they just didn’t seem to work. I was still very tired, but when I would try to sleep at night I couldn’t. The pills also made my blood pressure high, which has never been an issue for me since my blood pressure is typically quite low.
I decided to make a lifestyle change to manage my narcolepsy instead of pills—eat healthy, exercise, and reduce my stress. I have cataplexy, which is brought on by stress or laughter. This cataplexy is mild, I can tell when it’s happening and I just have to sit down because I get extremely weak. Since losing so much weight, my narcolepsy symptoms are minimal.
I don’t know what it’s like to ever feel fully rested. As you can imagine, this makes working, working out, or participating in life in general rather difficult, but not impossible. Imagine being up for days, finally getting to sleep, and someone waking you up after 20 minutes. That’s about what it feels like every day. I’ve had people ask me if my pregnancy has made it worse, and I’d say that yes, but only in proportion to what it’d be for anyone else. The first trimester and third trimester are always the worst, but it’s something you just deal with. I’m still able to be attentive to my kids, which is what matters most.
While each person’s narcolepsy is different, here are the ways I cope:
Get at least 8-10 hours of sleep per night
Make sure I’m getting enough Vitamin D
Take a nap on the days the kids are at their dads before supper
Avoid processed foods
Get up and walk around every hour while at work
Get rid of drama–no scary movies, gossip magazines, TV–keep things positive
Keep toxic people out of my life
Exercise daily, even if it’s just 10 minutes at a time
One very startling recommendation I saw was to have an elective c-section because of the risk of cataplexy during labor. Personally, I don’t agree with this one, but it’s best to ask your doctor. I was able to deliver vaginally–no c-section needed and no issues with my cataplexy!
Thank you so much for writing this! I’ve been contemplating how I will cope with having narcolepsy and being pregnant within the next 2 or 3 years. My cataplexy is like yours as well. This definitely gives me hope!
Kathy Haan says
I am so happy to hear that this post gives you hope!
good tips to manage with narcolepsy, I definitely try these tips to avoid day time sleep.