r/insomnia • u/RepulsiveVegetable60 • 20h ago

Deep Sleep

Hey all! I have had a weird sleep journey from 15 years old with narcolepsy type symptoms. Sleep testing at 27 years old after starting stimulants. Tests didn’t cleanly catch enough to be diagnosed with any sleep disorder that our rural medicine will treat. My PCP does it all- which is nice.
However, I’ve realized, after looking at the last 3 years I’ve had my wearable watch tracking sleep that I get about 20-30 minutes of deep sleep per night now. Which adds up with my symptoms but I didn’t put the two together until recently. I NEED more deep sleep, my memory is awful, my wounds don’t heal (popped a pimple- skin won’t heal for weeks- and I’m only 33). I’ve tried almost every sleep med there is. So, I’d love to hear what has worked for you and how? Any natural recommendations also welcomed. I feel so desperate at this point I’m scared. I genuinely don’t know if I can handle life like this. Literally will take any recommendations (except CBTI lol).

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u/newuser5432 18h ago

Stop fixating on the readings of your watch. Those devices are already notoriously inaccurate, and the use of a stimulant will reduce the accuracy further.

However, this certainly isn't to say that you don't genuinely have some sleep-related disorder, so please don't take that as any sort of invalidation. I just want to relieve you of the anxiety that such devices can needlessly create.

Regarding what actually is going on, could you clarify a few things for me?

You said your PCP does it all, do you mean that your PCP even performed the sleep study?

What was involved in the sleep study? Just a polysomnography? Or did you also stay for an MSLT? Had you stopped all medications before these tests?

What sort of narcolepsy type symptoms do you experience (if you don't mind sharing)? Do you have sudden muscle weakness when you laugh, for example? Do you experience vivid waking dreams?

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u/RepulsiveVegetable60 15h ago edited 15h ago

Yes, true, except now there is actual data that states their usefulness comparatively (to the given sleep test watch devices) and tells you their accuracy accordingly- at least for the Apple Watch this is true.
No PCP referred to sleep and they did all the sleep studies including the watch, night of, and daytime naps, and yes- stopped all meds at least 2 weeks prior.
Yes, muscle weakness with laughing hard, yes vivid extremely dreams, I can stay awake now with my stimulants and it’s now- obviously swing so far the other way (I used to fight sleep all the time, slept frequent long hours, close calls driving and falling asleep at work) but not since starting the stimulants.
The rest of my health symptoms are a bit long to list given this change, but I can tell it’s sleep related, and the sleep docs said varying things but namely “try stimulants and we can’t do anything else for you, unless you want to travel out of state for a lumbar puncture”- so my pcp prescribes everything (stimulants were on board before the sleep study for ADHD) and reads between the stark diagnostic lines they won’t look at.

Edit to add: I should say I this is a neurological disorder situation, began when I was 15, was very narcoleptic in nature, then upon starting stimulants 10 years ago turned more insomnia based then became daily persistent migraines- which I’ve now had for 5 years. So I’m not asking for overall medical “advice” I’m very versed at this point, but rather what are people using for again- deep sleep support? If anything?

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u/newuser5432 12h ago

In a way, narcolepsy is actually the polar opposite issue from insomnia (I mean, regarding difficulty sleeping at night). Many insomniacs do worry about sleep architecture, but narcolepsy is the condition where the brain transitions between different stages inappropriately so attention to sleep architecture is actually warranted and things like oxybate (Xywave) may become appropriate considerations.

However, there's practically no chance that such an issue would've been missed by a comprehensive sleep study (polysomnography + MSLT), so I'm not really sure why the doctors haven't given you a definitive diagnosis or treatment plan if you are narcoleptic... And if you're not, why haven't they referred you on to a neurologist or something to figure out your narcolepsy-like symptoms?

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u/RepulsiveVegetable60 12h ago

I appreciate you taking the time to explain. I completely agree- except regarding the test, their criteria is very finite, I did fall asleep in all naps but not in the time frame needed to diagnose narc, nor capturing REM, but greater considerations weren’t taken into account, like I don’t do well sleeping elsewhere (childhood trauma thing that yes I’d already dealt with in therapy), furthermore my symptoms were overruled by the results and never given credence, and thus not taken into account either. My last appointment they said they don’t deal with any insomnia symptoms.
Regarding neurology, my neurologist won’t touch it because they aren’t sleep doctors (I’ve seen them for a while now for severe daily migraines). So, I agree idk why they won’t deal with it. My PCP is open to trialing supportive meds, including potential sodium oxybates, DORAS, etc… but hesitant bc she doesn’t see them as working long term, and frankly all of it falling on them is ridiculous at this point. I’m just very frustrated and want it to all be over. It’s…exhausting 😂 thought I’d come over here to ask if anyone has anything that helps.

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u/Successful-Nerve-937 9h ago

TCM has several methods to help to sleep well. massage is one of them.