Comment by RevEng

That's the best guess my family doctor can come to as well. I've not been given a formal diagnosis, but we have proceeded assuming that is the case. Unfortunately that doesn't lead to many options for treatment. Modafinil helped to keep me awake but laying awake through those major episodes was a special kind of hell that I didn't want to live through. Methylphenidate has helped to keep me more alert and capable during the minor episodes, though it doesn't seem to have affected the major episodes. The only other treatment available seems to be Xyrem but it's really expensive and the side effects don't seem worth the risk - there's a very real chance of dying in your sleep. I find it funny that I would be trying to treat an ailment where I'm unable to move or wake up by taking a drug that will ensure I can't move or wake up.

The only other diagnosis that seems plausible is Klein-Levine syndrome. I'm hesitant to believe it's that because it doesn't explain everything and it's quite rare, but the major episodes sound similar and that's a rather unique symptom. I would say I also experience the increased hunger during those episodes. They do tend to last at least a day with periods in between where I will be awake but groggy for a few hours and I'm usually insatiably hungry during those breaks. However, if that's actually what it is, it's even less understood and treatable than idiopathic hypersomnia is, so other than having a name to put to it, it doesn't really help any.

That's why my doctor and I have just kind of left it where it is. We have tried the available treatments for these conditions with some limited success, and otherwise there isn't any benefit to having a formal diagnosis. In fact, the sleep pathologist suggested I may not want to pursue a formal diagnosis because, if diagnosed with something like narcolepsy, I may lose the ability to drive. My symptoms aren't such that I would become incapacitated without warning, but even just putting that name on it could lead to being treated as if that were the case.