Ok, going to get clinical for a minute. I promise to try to keep this to a brief-ish overview. We can get into the nitty-gritty in future posts. There is some really interesting stuff there.
According to the National Institute on Health, idiopathic hypersomnia (IH) “is a central disorder of hypersomnolence, with the primary complaint being the irresistible need to sleep and waking up non-refreshed despite the prolonged duration of sleep.” So really, it’s a big fancy name for a disorder that makes you very sleepy during the day even after a full night of sleep. Fun!
Not a lot is really known about IH, especially compared to other, similar disorders like narcolepsy and Kleine-Levin syndrome. Why? Well, partly because IH didn’t show up on anyone’s radar until 1956. And in 1956 it was only “conceptualized” (i.e., described/given a label without a ton of thought or research) as “sleep drunkenness.” Nice, right? An initial diagnostic description of IH didn’t make it into the International Classification of Sleep Disorders (ICSD), the most widely used reference for diagnosing sleep disorders, until 1976. Forty-eight years of research in the medical world is nothing. Thus, we still have so much to learn about this disorder.
But what do we know?
- It’s relatively rare: prevalence rates have been around 7.8 per 100,000 people in the US, and it’s equal between men and women. But rates have been rising – it’s unclear at this point if the rate of the disorder is actually growing or if we have just become a little better at recognizing and diagnosing IH
- Core symptoms: excessive daytime sleepiness, sleep inertia, uncontrollable need to sleep with long, unrefreshing naps – brain fog is also
- Considered a neurological disorder but there is some new research that suggests that it might be an autoimmune disorder (more on that in a later post)
- Etiology is unclear but triggers are thought to include abrupt change in sleep-wake habits, overexertion, general anesthesia, viral illness, mild head trauma. There may also be contributions from dysregulation of microRNA and/or abnormal immune system processing
- There is no cure right now, treatment is all about managing symptoms. And we haven’t so far been able to find really effective symptom management.
- In most people, symptoms remain fairly stable, but 1 in 10 can have spontaneous improvement in their symptoms (man, I wish I was one of those lol)
- It can be so hard to get people to believe you and it can take forever to get diagnosed. I know I have definitely felt brushed off by my sleep medicine doc and I know he really didn’t fully believe me until he say my multiple sleep latency test – although having a “told you so” moment was kinda fun and validating
I guess the good news is that IH is starting to gain more attention from doctors and researchers. But that doesn’t make it any easier right now for those of us living with IH and those living with other poorly understood and under-researched conditions. So we all go to sleep and wake up to a new day tomorrow, one day closer to a day where we can treat all disorders. And it’s kinda exciting that we can be advocates for ourselves and others and help be drivers for change.
Happy Napping!
Dad and I loved the lasted entry! Keep up the good work!