Comment by exhypothesi
Comment by exhypothesi 8 days ago
Wow I'm sorry to hear that, but it's also refreshing to hear from someone with a similar experience.
> just a more extreme case of the first is a complete inability to wake up.
> everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head.
I've tried to describe this feeling to others, but it's difficult. I call it my "death sleep," not to be dramatic, but because it's like waking from the deepest, most complete unconsciousness I can imagine. The heaviness in my body and chest make it feel a burden even to keep breathing; so I fall back asleep quickly.
After months of this, and visits with many specialists including a cardiologist, endocrinologist, and pulmonologist, an MSLT [1] gave the diagnosis of Idiopathic Hypersomnia [2, 3], which makes me laugh when you break it down: ("idio" = Unknown, "pathic" = Cause, "hyper" = Very, "somnia" = Sleep).
That diagnosis, while frustratingly vague, has at least allowed me to be prescribed medication that has made a big difference in my day-to-day alertness.
[1]: https://stanfordhealthcare.org/medical-conditions/sleep/narc... [2]: https://www.mayoclinic.org/diseases-conditions/hypersomnia/s... [3]: https://www.hypersomniafoundation.org/ih/
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.