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exhypothesi commented on Narcolepsy is weird but I didn't notice   fortressofdoors.com/narco... · Posted by u/bfelbo
kypro · 8 months ago
I've wondered if I've had some mild form of narcolepsy for a while now because I often get hit with a strong and sudden urge to sleep and will fall into a deep sleep rapidly if I'm sitting down. I don't remember this happening when I was younger, but it started happening more and more often in my 20s to the point I'd normally have at least one 20-30 min nap a day.

The author also describes dreaming while awake, and specifically just before sleep. Surely this is something that happens to everyone, no? My mind goes crazy when I'm about to fall asleep, and that's how I normally know I'm going to be asleep in the next minute or two. Typically I'll start thinking about strange interconnected things and people, objects and voices will randomly appear in my consciousness. Is this honestly not normal? Isn't that just what happens when you drift off to sleep?

exhypothesi · 7 months ago
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."

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/

exhypothesi commented on Narcolepsy is weird but I didn't notice   fortressofdoors.com/narco... · Posted by u/bfelbo
larsiusprime · 8 months ago
(author here) Wait, we finally know the cause now? When did this happen? How did I miss this!!! How definitive is this finding?
exhypothesi · 8 months ago
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.

https://ia800900.us.archive.org/0/items/info_munsha_DSM5/DSM...

pg 374, par 4 (pg 409 if using a PDF reader).

exhypothesi commented on Narcolepsy is weird but I didn't notice   fortressofdoors.com/narco... · Posted by u/bfelbo
greenavocado · 8 months ago
Iron deficiency anemia
exhypothesi · 8 months ago
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.
exhypothesi commented on Narcolepsy is weird but I didn't notice   fortressofdoors.com/narco... · Posted by u/bfelbo
exhypothesi · 8 months ago
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]

[1]: https://med.stanford.edu/news/all-news/2011/08/study-draws-c...

[2]: https://med.stanford.edu/news/all-news/2022/09/emmanuel-mign...

[3]: https://med.stanford.edu/content/dam/sm/narcolepsy/documents...

exhypothesi commented on Narcolepsy is weird but I didn't notice   fortressofdoors.com/narco... · Posted by u/bfelbo
slurpyb · 8 months ago
What are you prescribed? Similar situation; still trying to find the right meds.
exhypothesi · 8 months ago
* 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.

What has your experience been?

exhypothesi commented on Narcolepsy is weird but I didn't notice   fortressofdoors.com/narco... · Posted by u/bfelbo
RevEng · 8 months ago
This is fascinating. Three years ago, after recovering from COVID, along with many long haul symptoms I developed several similar to but still distinct from narcolepsy. Even now as the CFS-like symptoms have mostly faded, the narcoleptic symptoms are still present. Unfortunately I've not been able to get a positive diagnosis of any sort because it's atypical.

There are two main symptoms I experience. First is that, often without any clear provocation, I will become very fatigued and weak. This usually occurs over about 20 minutes, but the initial onset is a distinct event I've come to recognize. It gives many of those same long COVID symptoms: brain fog and drowsiness, weakness to the point of struggling to stand up or keep my head up, uncoordinated movements, and a feeling like I've been up all night and I desperately need to sleep. This often subsides after an hour or two, but it may last several hours.

The second which is perhaps just a more extreme case of the first is a complete inability to wake up. I may be slightly aroused and fade in and out of consciousness, but I have no ability to control this. I typically cannot move during this: 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. Depending on how conscious I am at any moment, I may realize I'm in this situation, or I might imagine that I'm just really tired or depressed and that's why I can't move. These episodes tend to last many hours, often 8 or more. They can happen as an extension of my random bouts of sleepiness, but often they occur as an extension of my normal sleep, resulting in me not being able to wake up - even when physically aroused by someone else - until well into the evening.

In both cases the sleep is not restful. Instead I often feel it come on again a few hours later, though less extreme.

exhypothesi · 8 months 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/

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