Feeling tired all the time? You might have Idiopathic Hypersomnia

I recently participated in a sleep study. After the doctor reviewed the results of my sleep study, we have a verdict: idiopathic hypersomnia. As I’ve mentioned before, I think it’s hilarious that I have something with the word idiot in it. But it’s a real disorder that many have, but I’d argue many don’t know about.

What is Idiopathic Hypersomnia?
When you break down the definition, it literally means you are very sleepy (hypersomnia) from an unknown cause (idiopathic). The symptoms are basically excessive daytime sleepiness that doesn’t go away, regardless of how much you sleep.

This is what made me go and visit a sleep doctor, I could sleep for 12 hours, wake up and not feel rested. I would even come home and take a nap during the day. No matter how much I slept, I would feel tired.

The doctor describes idiopathic hypersomnia as your brain not getting the message that you’ve slept. Your body is rested, but your mind doesn’t know.

This is a close relative to narcolepsy, both share daytime sleepiness as a symptom, but people with idiopathic hypersomnia do not suffer from suddenly falling asleep or losing control of muscles. Sleep apnea and restless leg syndrome are other disorders that can cause excessive daytime sleepiness.

How does the doctor know you have idiopathic hypersomnia?
It’s pretty simple: you do a sleep study. I describe the sleep study in detail here, but here’s a quick overview:

  • You spend the night hooked up to wires so they can measure every aspect of your sleep (snoring, restless legs, brain wars, etc.).
  • Most sleep studies are only overnight. However, to diagnose idiopathic hypersomnia, you have to spend the day at the sleep clinic (called the MSLT – multiple sleep latency test).
  • They tell you to go to sleep every 2 hours, but only allow you to sleep for 15-20 minutes.
  • If you can fall asleep during the naps, it’s a good indicator that you have idiopathic hypersomnia (or narcolepsy).
My results:
  • My overnight sleep test was, “very uneventful,” in the words of the doctor. I snored for about 3 minutes, woke up once (to go to the bathroom) and stopped breathing 3 times (which is normal – you need to stop breathing 4 times/hour to be diagnosed with sleep apnea). I had an overall sleep effectiveness score of 90 percent (very good, according to the doctor).
  • My MSLT (the daytime sleepiness test) was “extremely interesting,” according to the doctor.
  • I fell asleep in all 5 of the naps I was instructed to take, which is unusual.
  • My average time to sleep was 6.1 minutes. To put that into perspective, an extremely abnormal time to sleep is 8 minutes. Just another way I’m extremely abnormal. :)
  • I only fell into REM sleep (the dreaming sleep) once during my 5 naps. People with narcolepsy typically fall into REM sleep at least 2 times during the 5 naps.

How do you treat Idiopathic Hypersomnia?
Idiopathic hypersomnia is typically treated with “wakefulness agents” (that’s the pharma industry way of saying stimulant). One of the most common drugs is Nuvigil (the newer version of Provigil).

I’ll probably devout a whole blog post to Nuvgil/Provigil/Modafinil (all are chemical cousins) soon. A lot of people without sleep disorders use these drugs for performance (in work and sports). It has very few side effects and it works.

Nuvigil has also been shown to help with ADD (something I’ve always thought I had, but was never diagnosed).

How many people have Idiopathic Hypersomnia?
The only research I could find says about 1% of the population. Not many, but still a substantial number.

Have questions?
Let me know in the comments. I’d love to help.

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