Samantha Marie Blog

Tired of Hypersomnia

Five more minutes.

These are some of my favorite words. Any chance I get a couple more minutes of sleep, I’m going to take it. I’m tired of living with hypersomnia. I’m tired of explaining myself. And the biggest part, I’m tired of feeling like no one on this big flippin’ earth believes me.

Is it nap time yet?

Six years ago I was sent for a sleep study after struggling with excessive daytime sleepiness for too long. Okay, you’re probably already thinking…that happens to me. I’m tired too. Listen, I’m the first one to understand and respect being tired. My point in this post isn’t to make anyone to feel bad for me because I know I don’t have a bad life, at all. I’m just looking for a little understanding of this invisible disease and how it effects my life.

I was 20 years old and could barely keep my eyes open on my 35 minute drive into work. Never mind, my drive home in the dark after working all day. My mom knew if I was calling it was because I needed someone to help keep me up. I was getting plenty of sleep but it still didn’t matter. Nothing seemed to help. I thought of everything in the book to blame it on. Everyone’s tired – suck it up.

I have a family history of narcolepsy, which is a tad bit different than hypersomnia. After I denied that narcolepsy could be a possibility for some time, my cousin finally convinced me to go for a sleep study. It was around the same age that she was diagnosed after struggling to stay awake for most of her life. I was beyond surprised when I got my results back and she told me that I didn’t have narcolepsy. All I could think was, I knew it. Maybe I had been overreacting, this was normal. Then she told me that I had idiopathic hypersomnia. Yup, I said that too. What the hell is that?

Let me just rest my eyes…

Idiopathic hypersomnia  is a chronic neurological disorder marked by an insatiable need to sleep that is not eased by a full night’s slumber. People with idiopathic hypersomnia sleep normal or long amounts of time each night but still feel excessively sleepy during the day. They may take long naps, but wake up feeling no better or worse than when they fell asleep.”

As I mentioned, I had to not only complete a sleep study but a multiple sleep latency test which is a daytime test that measures how quickly you fall asleep. It consisted of 5 scheduled 20 minute naps every 2 hours. Falling asleep under 10 minutes was abnormal and under 5 minutes was considered very abnormal. Each nap I fell asleep in under 5 minutes. Easiest test I have EVER had to take!

I slept in, AGAIN.

Here’s a little insight of my day. Each morning I struggle to wake up. I have to set about 8 alarms in hope that one of them will finally push me out of bed. And it’s usually the last one. Once I get up, I scramble to get ready and out the door because once again I slept too late. Even though the entire night before I convinced myself that this morning would be different. I would get up early, maybe even do a workout or how about just do my hair and makeup for work.

Kyle and I usually talk on our way to work which helps me stay awake and keep the mouth open, dazed look to a minimum. Our conversations usually go something like this:

S: “Oh did I tell you about…”
K: “What?” (Bless his soul!)
S: “Oh you know about that…”
S: “What was I talking about?”
K: “You were going to tell me something.”
S: “I forgot what I was going to say”

I wish this was an exaggeration but it’s pretty spot on. My brain seems to always be in a fog. My words are never within reach and sometimes I can’t find the end of my sentences. It’s beyond frustrating. I know what I want to say – I’m just too tired to put it together. Kinda like that first minute after you wake up except mine can last all day.

My bed is calling my name

I get to work and usually around 10 AM I can feel the heaviness of my eyes. It’s a love/hate relationship with the medicine I take to help keep me up. I don’t love the way I feel so I try to push it off as long as I can. People ask what’s wrong or how’s my morning going and I always respond with, “I’m tired.” People are understanding but I get comments back like “you think you’re tired now, wait until you have kids.” And you know what? I have so much sympathy for them. I know how it feels! But for some reason it seems like it’s more acceptable that they would be tired more than me. I’m young, healthy and don’t have any children, I shouldn’t be tired. But I am – every single day.

I usually wait until after lunch to take my medicine because it kills my appetite. I love to eat, so I hate when I feel this way. Once I take my medicine the energy pulses through my body. Literally! My heart starts beating a little faster, my mouth gets all sorts of dry and I try to not let myself talk everyone’s ear off. During this time, I’m awake and focused but deep down, I’m still tired.

I can usually get away with taking one pill a day (I’m very lucky!) but depending on how I feel I’ll take a half for the ride home. The entire ride home I’m convincing myself of everything I’m going to get done tonight. Some extra homework, a workout, the laundry that still needs to be folded. I eat dinner and again, crash. I don’t want to move or do anything. I’m too tired.

Hi – I’m tired.

By now you’re probably really interested in learning something new about me or you might be thinking, who cares about any of this! Let me be clear. I’m by no means writing this post for sympathy or a free pass. I want people to be aware of this because sometimes I feel a little misunderstood.

If you can’t see it, is it really there?

Idiopathic hypersomnia is invisible. I want to thank everyone who has always believed me. Those of you who have talked to me on the phone to help keep me awake, reminded me to take my medicine before we go somewhere and always understands when I just need to take a couple minutes to rest or nap. Thank you from the bottom of my heart.

If you are struggling with idiopathic hypersomnia, narcolepsy or any other kind of sleep disorders I would love to chat with you! And if you’re thinking that you might have a sleep disorder, I highly recommend talking to your medical provider about it to see what the next steps are.