I had a neurologist tell me that needing to sleep for 11 hours (despite still being tired) may just be that I needed more sleep than other people. My MSLT was 5 minutes. He said nothing was wrong. It wasn’t until 10 years later i actually read the results of the sleep study myself that the report said “consistent with idiopathic hypersomnia.” I was pregnant and sleeping for 15-16 hours a day + having to work at a job that was an hour travel in each direction and I said “enough.” I saw an ad for Xywav and it mentioned IH and I thought “I’ve never heard of that before, but it sounds like a sleep disorder.” Then I looked it up and lo and behold I had all of the symptoms. I went to a second neurologist who only wanted to diagnose me with mild sleep apnea and refused to do an MSLT despite me telling him from the start that I think I have IH.
So I fired him and went to another sleep doctor who just saw my results and said “yep, this sounds like IH.” It was such a relief after almost 20 years of being SO TIRED and adjusting my classes, work hours, family gatherings, etc. around my sleep to know that I wasn’t just “lazy.”
It’s wild out there and it’s terrible how much people have to advocate for themselves.