Yes, what you describe, the hypnogogic state, is something that almost everyone experiences to varying degrees and frequencies:
> "Although experiencing a hallucination might prompt confusion or fear, hypnagogic hallucinations are relatively common. Hypnagogic hallucinations are a common symptom of narcolepsy, but can also occur in people who do not have narcolepsy. In fact, one study found that 37% of people report experiencing hallucinations as they fall asleep."
Their association with narcolepsy is one of several features, and it occurs more frequently and often during daytime naps in patients with narcolepsy:
> Hypnagogic states are not only an associated feature of narcolepsy, but they also are favourable for a diagnosis. Accordingly, the prevalence of hypnagogic states was higher in patients with narcolepsy than controls (Bosch et al., 2012; Fortuyn et al., 2009). Moreover, patients with narcolepsy are also more prone to experience daytime hypnagogia (Fortuyn et al., 2009), most likely due to excessive daytime sleepiness.
It's easy to miss! The only reason I know is because of all of the research I've done into my Idiopathic Hypersomnia diagonsis. Mignot is well-respected because of his research.
It seems it's possible to get it from hypocretin deficiency via other routes like brain trauma, but they are confident enough to put this explanation in the DSM-5:
> Narcolepsy-cataplexy nearly always results from the loss of hypothalamic hypocretin
(orexin)-producing cells, causing hypocretin deficiency (less than or equal to one-third of
control values, or 110 pg/mL in most laboratories). Cell loss is likely autoimmune, and approximately 99% of affected individuals carry HLA-DQBl06:02 (vs. 12%-38% of control
subjects). Thus, checking for the presence of DQB106:02 prior to a lumbar puncture for evaluation of CSF hypocretin-1 immunoreactivity may be useful.
Thank you for the input, but a full blood panel for vitamin and mineral deficiencies is the _first_ thing a primary care physician checks when reporting these symptoms. To get to an Idiopathic Hypersomnia diagnosis, you have to exclude many things most people think of: vitamin and mineral deficiencies, poor sleep hygiene, depression, sleep apnea, etc.
Tangential: The story of the discovery of the cause of Narcolepsy is fascinating [1], [2], [3]
TL;DR: Narcolepsy is an autoimmune disorder caused by the destruction of the approximately 70,000 neurons that are responsible for producing the neurotransmitter orexin. [2]
A key piece of evidence was data analysis that showed a correlation between seasonal flu epidemic in China and subsequent new narcolepsy diagnoses. [1]
* Modafinil (400mg, 1x daily) - Started with 100mg and tried several variations of timing/dosage. Currently, 400mg upon waking in the morning has worked the best.
* Duloxetine (30mg, 2x daily)
My PCP prescribed the Duloxetine early in the process when they suspected I had ME/CFS. It did not seem to do much other than make me feel calm in situations that would normally cause anxiety, but later I got the IH diagnosis and was also prescribed Modafinil. My PCP offered to help me stop the Duloxetine, but I decided to stay on it because: 1) I was so grateful for the relative energy I had after starting the Modafinil that I didn't want to do anything to compromise that, and 2) I was enjoying the anxiety-reducing effect.
The Modafinil has not completely relieved symptoms; I still have fairly bad sleep inertia and will crash with a "sleep attack" about once a week, but that is far better than before, when I was sleeping 11-18 hours _every day_.
Sorry--I'm sure that's not too helpful to you, as it seems Modafinil is doctors' standard starting point for IH "treatment" (at least in the US).
Edit: Oh, and despite the "warnings" in the Modafinil instructions, I also drink about 3 cups of coffee a day (stopping at noon), and I feel that has been a vital supplement.
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.
> "Although experiencing a hallucination might prompt confusion or fear, hypnagogic hallucinations are relatively common. Hypnagogic hallucinations are a common symptom of narcolepsy, but can also occur in people who do not have narcolepsy. In fact, one study found that 37% of people report experiencing hallucinations as they fall asleep."
Source: https://www.sleepfoundation.org/how-sleep-works/hypnagogic-h...
Their association with narcolepsy is one of several features, and it occurs more frequently and often during daytime naps in patients with narcolepsy:
> Hypnagogic states are not only an associated feature of narcolepsy, but they also are favourable for a diagnosis. Accordingly, the prevalence of hypnagogic states was higher in patients with narcolepsy than controls (Bosch et al., 2012; Fortuyn et al., 2009). Moreover, patients with narcolepsy are also more prone to experience daytime hypnagogia (Fortuyn et al., 2009), most likely due to excessive daytime sleepiness.
Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC10078162/