My battle with Narcolepsy

This is something I haven’t talked about openly until the last couple of years. Mainly because I was embarrassed by it. I thought others would judge me for it. For a long time, I thought maybe it was all in my head.

Throughout my life I had always suffered from excessive sleepiness. I know I know everyone this day and age feels like they suffer from excessive sleepiness, but just listen. I was a pretty normal kid, I did all the normal kid stuff. I had lots of friends, got good grades, I went to birthday parties, and had sleepovers. The older I got I always knew I felt different. I didn’t have the energy my friends did. I started to not like sleepovers because I wouldn’t sleep well through the night, waking often, and when I woke up in the morning I was so beyond tired I just wanted to go home, where I would sleep half the day away. When high school came around it got a million times worse.

My parents always left for work before I left for school. They would wake me up before leaving so I could start getting ready for school. I would wake up, I would start getting ready, but IF I laid back down in bed I was asleep again for hours. I missed so much school, the first 3 periods of classes most days. I got in so much trouble with my parents, teachers, and even the principal. I think at one point there was even talk about going to community high school because of how much of the school year I missed. I didn’t get it. I didn’t understand how when I slept at night I remained so indescribably tired during the day. To the point where I could fall asleep anywhere. I would fall asleep in class (yes I woke up once with drool all over my table) I would fall asleep in my car. I felt sick all the time. My parents just thought I was a lazy high school kid trying to get out of going to class, but I always kind of knew/hoped it was something else.

It wasn’t until many years later that my doctor brought it up to me at my routine physical. I had been tested for thyroid disorders, anemia, cardiac dysfunction (that’s another story), depression, etc. I was referred to a Sleep Disorder Dr. and was scheduled for a sleep study. I had to sleep through the night in a hotel like bed, with wires attached to every part of my head. I was also wearing a cardiac monitor because I was having issues with my mitral valve again. So I had wires everywhere and was extremely nervous and uncomfortable. Trying to relax for sleep for most people would be near impossible. According to the sleep study I entered REM sleep within 2 minutes of starting the study. I showed no signs of sleep apnea, seizures, or anything else to explain my symptoms. The next morning I had to stay and take a series of 5- 20 minute naps with an hour off in between. I fell asleep within a minutes of being told the next nap would happen over a speaker in the room, and I entered REM sleep immediately within seconds for multiple naps.

According to the cut “Roughly translated from Greek, narcolepsy means “seized by numbness,” and the primary symptoms of this chronic neurological disorder are excessive daytime sleepiness, sleep attacks, and the overwhelming urge to take regular naps — sometimes truly overwhelming. For those with narcolepsy the boundaries between wakefulness, non-REM sleep, and REM sleep can be impossible to decipher. People with narcolepsy often have trouble waking and may never know what a restful night’s sleep feels like.”

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This is the hardest part for me, not the cataplexy, not the waking during the night, but the overwhelming tired feeling and urge to nap during the day. I don’t know how many times Phil has said “I don’t know why you’re so tired, you slept for 12 hours last night.” Trying to get home from work and focused on school somedays is absolutely impossible. As soon as I sit down to study the urge to sleep takes over. I find myself telling Phil “I didn’t sit down after work today, so I actually got some stuff done” Can you imagine not being able to relax at all because you don’t want to fall asleep and miss out on assignments, work, and spending quality time with those you love? Yes, some nights I sleep for a normal amount of hours, but I wake up constantly, sometimes up to 10x a night. So my sleep is no where near regulated, which is needed to help manage narcolepsy symptoms.

According the Alaska Sleep Clinic “Narcolepsy is  one of the most common sleep disorders afflicting approximately 1 in 2,000 people. People with regular sleep patterns will have about five 90 minute cycles alternating between NREM and REM with approximately 75% of sleep spent in NREM. In the NREM stages of sleep the body relaxes so that it can repair and build tissues and bones and strengthen the immune system; in REM sleep, brain activity increases and most people experience dreaming. For those with narcolepsy, sleep begins almost immediately in the REM stages, and fragments of REM occur involuntarily during waking hours.”

I also recently developed more severe cataplexy symptoms. I always had mild symptoms of cataplexy, like trouble speaking, getting real hot or real cold, numbness and tingling in my arms and legs when I experienced strong emotions. This year I started to get full body cataplexy attacks. The first attack happened when I was getting my eyelashes done at a place in downtown Ferndale. For some reason, getting my eye lashes done is super relaxing, but not this time, I was so stressed about getting home. I was very stressed because I had tons of school work to get done and I had just gotten off work at 11am. She just finished my eye lashes and I sat up; I remember the warmth coming over my body and the tingling increasing from my fingers and toes to the rest of my body. I was completely awake through the whole thing, I watched myself slumping to the floor. It was so embarrassing. She tried convincing me to call 911 multiple times but by the time I explained my medical history to her she was comfortable not calling. I stayed at the salon for about a half hour afterwards then drove home. It was one of the scariest and most embarrassing experiences of my life. I called Phil in tears and he left work to come home.

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Funny thing is that maybe 2 days prior to this episode, my sleep Dr had told me if I didn’t try to regulate my sleep more (ie. get off night shift) and reduce my stress (ie. Get off night shift or quit grad school) that my symptoms would get worse, and guess what they did. I now rely on 400mg of prodigal daily. I take a 100mg pill up to 4x a day just to stay awake, and feel “normal.” This in itself doesn’t feel normal to me. I don’t like relying on a medication to feel normal.

I have missed out on so many parts of life. I have to cancel plans with friends because I can not find the energy to get out of bed. I miss family events, miss doctors appointments. Catch myself not listening when others are talking because my head is in such a fog. Fall asleep during every single movie. When I worked night shift I would wake up for work after trying to sleep during the day and I would get sick to my stomach and have to call into work because I couldn’t drive an hour there without the fear of falling asleep on the way. No amount of caffeine affects me. Almost daily I would get home from work at 8am after work a 12 hour night shift and would fall asleep in my driveway only to be woke later by the sunlight. It’s a pretty indescribable feeling and very poorly understood by most.

Im turning 30 this year and have decided to take my health into my own hands before it gets any worse. I have turned to multiple podcasts, and books to assist. I’ll invite you guys on the journey in the next couple of posts. Sorry for the delay between posts, life really got the best of me these last couple of months.

Xo,
Cat

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One thought on “My battle with Narcolepsy

  1. I can totally relate to a time period where I just could. not. stop. if I wanted to accomplish anything. Around the time I was diagnosed with narcolepsy I was an RA in the dorms and found myself up between the hours of 2 and 6 am waay too often dealing with freshmen shenanigans. It took me a long time to finally decide to take care of myself, so wishing you the best going forward!

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