The need tosleepoverwhelms me.
Currently,not much is known about the pathology of IH.
But this “ability” isnt a blessingits a burden.
JGI/Jamie Grill/Getty Images
Sleep drunkenness is when patients have an extremely exaggerated difficulty waking up in the morning, says Dr. Trotti.
Those episodes can be really problematic for patients.
But thats certainly how I felt other people saw me.
It was even suggestedby everyone from friends and family to doctorsthat losing weight would help ameliorate my sleep issues.
I spent the night in a sleep clinic where I was hooked up to wires and sensors.
I dont doubt that this doctor meant wellwhat Idodoubt is that he was really listening to me.
My sleep schedule shortened from 10 to 8 hours a night and my coffee intake grew exponentially.
I fell asleep on the bus.
I fell asleep on a park bench.
I even fell asleep at my desk.
All the activities that made me happy were replaced by the need to be asleep.
Sleep helped me conquer heartbreak.)
She told me that the previous sleep doctor should have ordered amultiple sleep latency test(MSLT).
An MSLT is performed the dayaftera patient spends the night in a sleep clinic.
The test consists of five 20-minute naps, each two hours apart.
Those criteria are what sleep doctors use to determine a diagnosis betweenIH and narcolepsy.
I wasnt always sure if I had fallen asleep and worried that this would leave me without any answers.
Turns out, on average across the five naps, I fell asleep in seven minutes.
In February, my sleep doctor called to inform me of the diagnosis.
I wasn’t quite sure how to feel, but I was relieved to have a diagnosis.
I hadnt wasted anyones time by pushing for more tests.
I hadnt wasted my own time waiting months for the appointments.
And as I learned more about IH, I began to feel validated.
Its as though I feel justified by being able to say definitively, I have a sleep disorder.
This fall, I searched idiopathic hypersomnia across social media to see what I could find.
It was baffling how similar her story was to mine.
I never felt any better after a nap and it was so frustrating, she tells me.
We echoed each others obsession with coffee, frustration with doctors, and feelings of isolation.
For so long I thought I was crazy, she says.
I couldnt agree with her more.
Since doctors dont yet know what causes IH, treatment options are limited and only work to alleviate symptoms.
I now take a medication calledmodafinil, a wakefulness-promoting drug with none of the shaky side effects from stimulants.
In addition to making me feel more awake, it also gives me tunnel-vision-like concentration.
While I scrolled through Instagram posts after searching idiopathic hypersomnia, I began to cry.
It forced me to confront something I had always felt: I was sleeping my life away.
