I’ve been sleepy for a really long time, and if given the opportunity, can and will take several naps per day. I thought it was due to my poor sleep habits until two years ago when I took a sleep sciences course. After applying what I had learned, my insomnia symptoms disappeared, and my sleep habits became award-winning. I was getting the much-needed amount of sleep I needed every night, but unfortunately, I was still tired all the time. It’s funny to me that I had to become a sleep specialist to realize I had sleep issues, but at least I can speak from experience, right?
It was while I was reading Julie Flygare’s book, Wide Awake And Dreaming; A Memoir of Narcolepsy, that I first realized there was something going on. Julie is the Founder and CEO of Project Sleep, and she’s a passionate advocate for people living with narcolepsy.
I was reading about Julie’s extreme sleepiness and relating to a lot of it. I guess I didn’t realize my own sleepiness was so extreme until I read about it through someone else’s eyes. I knew what it was like to get a sudden overwhelming urge to sleep and trying to force my eyes to stay open because it wasn’t a good time or place to take a nap. I could relate to the feeling of waking up from a long nap and having creepy dreams that felt so real. I understood the dangers of driving long distances at night because my eyes would slowly start to close no matter how loud the music or cold the air blasting through the vents. Even as I write this I’m looking forward to my next nap.
When I finished the book I sent her so many long-winded private messages on Instagram that I can’t believe she responded as sweetly as she did. Anyone else would have been like, Whoa, girl. Relax. Ain’t nobody got time for this!
So, since reading your book and learning about narcolepsy, I typed furiously with two fingers, I’m wondering if I have it. Then I told her all the symptoms I’ve experienced for so many years, and she chatted with me for a while. She encouraged me to see my doctor and push to have a sleep study done. Since that night I’ve done a lot of research into sleep disorders, and my symptoms sound more like idiopathic hypersomnia, which is a neurological disorder that is a milder form of narcolepsy.
According to hypersomniafoundation.org, People with idiopathic hypersomnia sleep normal or long amounts of time each night but still feel excessively sleepy during the day... Additional symptoms and complaints commonly include unrefreshing or non-restorative sleep, sleep inertia and sleep drunkenness. Symptoms often first appear in the mid-to-late teens or early twenties, although they can begin in childhood or at a later age.
Well, shit. That sounds a lot like me.
MY OVERNIGHT SLEEP STUDY RESULTS
So, I went to have a sleep study done, and my results were both expected AND unexpected.
(Listen to my sleep study podcast episode HERE.)
The first 20 minutes of my appointment was spent in a small room that looked like both a hotel room and a storage room. It had a bed, framed floral pictures on the walls, and several stacks of boxes. I tried not to make eye contact with the bed so I wouldn’t start fantasizing about napping on it. The woman asking the questions was nice and funny, and we laughed while she took my blood pressure and asked about my family health history.
The doctor came in, checked my heartbeat and asked me to follow him to his office. He was a soft-spoken man who looked small behind his giant elaborately-carved wooden desk. He showed me pages of my sleep study on the computer monitor beside him. He wasted no time telling me what he found.
You have very mild sleep apnea. He said.
I never would have seen that coming. My response was, Really!?
When you are in your deepest sleep your breath becomes very shallow. He continued. You slept for almost 6 hours and woke-up 19 times.
I didn’t remember waking up that many times. I have never woken up with dry mouth or gasping for air. I don’t commonly snore, not unless my allergies are bad or I have a head cold. This diagnosis came as a complete surprise.
He went on to tell me that my breathing was worse when I slept on my back, and that made me laugh out loud. I had been a side-sleeper until a few years ago. Sleeping on my back is said to be the best position to sleep, and now I was being told that it was causing mild sleep apnea! He said it was likely making me feel tired during the day. We discussed the lifestyle changes I’ve been making that should help. I cut out milk and cream because it was making my nose run. I told him I’ve been exercising daily, and he liked that.
Then the not-so-unexpected part. He asked how long I’ve been feeling excessively sleepy.
Oh, since high school. I said. Maybe 25 years.
I told him about the naps in strange places at inconvenient times. And then he said the words I had been expecting; idiopathic hypersomnia. He said it commonly starts at the age my sleepiness started, and if sleep apnea wasn’t the sole cause of my issues, he would look into it further.
Hypersomnia is treated with medication. He said. I must have made a face because he followed that up quickly with, If you want.
I thought for several seconds. He watched me, and finally, I shrugged and asked, So what do we do now?
I think you should continue to do what you’re doing. He said thoughtfully. Staying active, eliminating dairy, and trying to sleep on your side. Let’s give it three months and if there’s no change in how you feel during the day, we’ll test for hypersomnia.
Ah, another overnight science experiment followed by the famous daytime napping test. I have to admit, I was curious to see if I could fall asleep every two hours. I didn’t want to have hypersomnia, but at least it would explain the last 20-something years of sneaking off to sleep on other people’s beds.
I thanked him and was on my way.
FEELINGS AFTER RECEIVING RESULTS MAY VARY
Feelings about my results? Instant relief that I’m not being a hypochondriac. I am tired for a reason. I can’t imagine how frustrating it must be for people who are spending years trying to get a diagnosis, for them to have the people around them, not to mention medical professionals, not take them seriously.
I told a friend I was going for a sleep study because I was excessively tired and needing several naps per day. She told me everyone is tired and I probably need to take iron pills. That’s one annoying conversation with someone who doesn’t understand the seriousness of excessive daytime sleepiness, can you imagine having daily conversations like that!?
If you are having trouble sleeping, and you feel like you've tried everything, (and even if you haven't tried everything!) get an overnight sleep study done. Don't suffer any longer. Get some answers and some relief.