Idiopathic Hypersomnia, Sleepless Overseas

An interview with UK-based writer Anne Wollenberg, who lives with Idiopathic Hypersomnia.

Idiopathic hypersomnia is a rare sleep disorder that causes extreme daytime sleepiness. This extreme tiredness remains even after a night time sleep of over ten hours. People with idiopathic hypersomnia have trouble waking up even after sleeping 12-14 hours, and naps do little to relieve their symptoms. Upon awakening from a nap or a full night's sleep, the hypersomniac may appear dazed and confused, a condition called "sleep drunkenness." This disabling disorder usually occurs in people over the age of thirty and may worsen with age. (http://www.sleepeducation.com/Disorder.aspx?id=48)

Q: You were tired all the time? You sought medical care and received tests. What conditions do you not have?

Pretty much any medical complaint that could be detected from a blood test, such as diabetes or thyroid problems.


Q: Are you currently in a relationship and if so, when did you first discuss this with your SO?

I'm not in a relationship right now - and when I do meet people it's hard to know when to bring this up. Recently I went on a date with someone new and tried to explain I had a sleep disorder (though I hadn't been formally diagnosed yet). His response was "Oh yeah, I fall asleep in front of the TV sometimes too." I instantly went off him!

Q: Does having a name for the tiredness make you feel better in any way?

It's not so much about having a name for it, as having doctors acknowledge that, yes, I really do have a genuine problem. Having evidence of that problem makes me feel much better, as it took so many years to find someone who would believe me and investigate.


Q: What did you study in college?

I have a BA in English and Sociology, and an MA in English with a creative writing specialism.

Q: Have you tried natural remedies, vitamins, mushrooms someone mentioned in response to the article?

I have tried vitamins, which didn't make much difference, but wouldn't try anything too outlandish. To be honest this is something where traditional medicine was needed in the first instance, but I'll be looking into complementary therapies too.


Q: Would you try acupuncture?
Definitely. It's something I'm going to look into.

Q: Are you tired right now?
I'm almost always tired, and I'm tired right now - but the difference is I'm awake and alert instead of being sleepy.

Read more from Anne Here