What's It Like to Have Idiopathic Hypersomnia? My Life with a Rare Sleep Disorder

Friday, October 4, 2019

It's been about 10 months - nearly an entire year - since I started medication to treat my idiopathic hypersomnia (IH), a neurological condition that causes my body to need/want more sleep than your average bear - literally, almost like a bear, all my brain wants to do is hibernate.

I now take medication every morning to try to control my condition - & truly, I have never felt better. Are things perfect? No, & I still follow up with my neurologists every two months to address ongoing concerns. But for the most part, things are better than they ever have been, awakeness-wise.

I started to put together a big, long Q&A answering questions about life with IH, but I realized I had more to say than fit into a single blog post. Instead, this post is going to be the start of a long series in which I answer those questions & break them down into smaller, more readable categories.

So today, let's talk about the general gist of idiopathic hypersomnia: what it is, what it does, & how it affects me, in particular. As they say, your mileage may vary.

"Hey, Kate! What is idiopathic hypersomnia, anyway?"

Idiopathic hyopersomnia is a chronic neurological sleep disorder. Although some people may experience bouts of hypersomnia in relation to other health issues, that is not idiopathic hypersomnia. "Idiopathic" means there is no known root cause; thus, IH is a chronic & persistent condition for which there is no known cause or cure.

The National Institutes of Health says IH is characterized by "[having] a hard time staying awake and alert during the day (chronic excessive daytime sleepiness, or EDS)" & that people with IH "may fall asleep unintentionally or at inappropriate times, interfering with daily functioning. They may also have difficulty waking up from nighttime sleep or daytime naps. Sleeping longer at night does not appear to improve daytime sleepiness."

"You just... sleep a lot? Is that really a medical problem?"

In a word, yes & yes. Remember what the NIH said: IH interferes with daily functioning. 

Throughout the course of my life, I have made significant efforts to accommodate my sleepiness & to cover up those accommodations from others. This has included napping in the basement or back room of my office, taking midday naps while working from home, pulling over my car to take naps at rest stops during road trips, calling off "sick" so I can sleep, & more.

Imagine yourself at your tiredest, right before bedtime, & now imagine that you feel like that frequently, midday, at random, & at times when you almost assuredly can not go take a nap. That's me. And yes, it's pretty problematic.

"How common is hypersomnia?"

Not very. IH is considered a "rare disease," believed to be at least 10 times less common than narcolepsy - & thus, there's much much less awareness around IH than around narcolepsy.

"Do you have all the symptoms of IH?"

Everything the NIH describes is true of me, aside from "falling asleep unintentionally." My sleep needs have certainly interfered with my daily functioning (we'll talk about that later), but I never really, like, drift off at random.

I do, however, experience excessive daytime sleepiness (EDS), times of pressing & persistent need to go to sleep, & I have to make immediate accommodations for that need.

I also sleep a lot - my brain doesn't seem to know what "too much sleep" means or have any internal version of saying, "OK, that's enough!" Also, unfortunately. sleeping doesn't feel particularly refreshing or helpful. I can sleep until 4pm if left to my own devices - & I've done it.

"How did you know you had a problem?"

Aside from being a thirtysomething who can sleep until 4pm, you mean? That was a sign, right there... but truly, I always chalked it up to some form of laziness because I had no idea a medical diagnosis could even be possible (though I was tested for mono multiple times in college - & never had it).

People have always, always, always thought I was just lazy. No one ever came out & said so, but it was implied: "Kate sleeps so much." "Kate, are you going to sleep through this beautiful day?" "God, Kate is, like, never awake." "Man, Kate, you slept through a really fun night... again..."

I'm not an inherently lazy person. I get a lot done! But my body has always felt like it's time for bed - like, basically all the time - & eventually, I started to realize how not-normal that is.

The realization especially dawned on me in 2018, when I was spinning three to four times a week & still not feeling more awake. I'd yawn through an entire ride, even when my endorphins were at their highest! Finally, I knew it wasn't just laziness; something was going on

"What does your tiredness feel like when you're not medicated?"

I describe it this way: I'd never say no to a nap. At any given point, I could sleep - so while I don't fall asleep at random or mid-sentence, as narcoleptics do, I'm perpetually exhausted

The other way I describe the way I experience my hypersomnia is similar to the way people experience migraines: I experience bouts of tiredness (there's that EDS again) that come on suddenly & forcefully, making me feel not only exhausted but confused, dizzy, & foggy. If I push through, these episodes sometime dissipate - & if they don't, I have to go to sleep.

"OK, so do naps help?"

Here's the crummy part: No, naps don't help. I mean, they "help" in that I'm sometimes unable to function while awake & thus have to go to sleep - but I don't wake up feeling refreshed or rested.

In fact, most people with IH wake up with what's called "sleep drunkenness," an inability to shake it off or truly awaken - which makes waking up from a long nap or a "good" night's sleep pretty unpleasant. I don't know that I've ever considered myself "well-rested" a day in my life, even when I've slept for 16 hours at a time.

And yes, I've done that. Recently.

"How did you pursue a diagnosis?"

Quite simply, I wouldn't take "no" for an answer.

For a long time, every doctor with whom I raised my "I sleep too much" concern told me it was nothing to worry about. They told me to take more vitamins, to exercise more, to eat better. They told me it was all in my head.

I knew I needed to see a doctor who would listen to me - so I kept looking. I called a neurologist to schedule a sleep study, & during our first appointment, he floated the idea that I might have hypersomnia. He listened to me - & when my test results came back indicating that he was right, we moved forward with a real plan that addressed my real sleep issues & didn't shame me into thinking I was just unhealthy or lazy.


That's it for today, friends - but if you've been at all interested in this strange sleep journey of mine, well, that should keep you satiated for a bit.

If you have any questions, leave 'em in the comment section below, or you can shoot me an email or a DM on Instagram. I'd love to hear from you so I know what to answer in future Q&As on this topic. And if you have idiopathic hypersomnia or know someone who does, I'd love to hear from you, too!

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