#21

The trazodone profile appears to be more safe, and less disruptive or even improves sleep architecture.

but you did nor feel that, correct?

Thanks for the help

#22

I should clarify, small molecules have been shown to help, but the difference is a well adjusted CPAP will eliminate the problem, reducing apneas to 0. All small molecule interventions only partially reduce the problem.

In terms of small molecules, trazadone, possibly in combination with atomoxetine can help. Here are some studies.

#23

THAK YOU

I have a CPAP machine, and my index is never more than one, generally 0,5. Its use was somewhat uncertain because my apnea index is low. During the test, due to the old equipment, I had to lie on my back, though I normally sleep on my side. I use the CPAP, but it often disrupts my sleep—it’s not an easy solution. I wish I could use an EEG to monitor my sleep for a few nights. I’ve noticed on my Holter monitor that the CPAP slightly increases my lower heart rate during sleep, which I don’t view as a negative since it’s close to 32 bpm.

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#24

I was also thinking about Baclofen.

Baclofen for narcolepsy with cataplexy: two cases - PMC.

#25

Got it. Glad to hear you’re using the CPAP and that it measurably reduces your apnea index. I would see about adjusting the settings or the mask type to see if that might help with the comfort. Masks also have a tube that comes out of the top of your head that can make side sleeping more comfortable (that way the tube is sort of behind the bed instead of in front of your face and getting tangled with movement/side sleeping).

Beyond fixing the apnea index, your first stop is Trazadone. While it’s primarily used for sleep onset, it’s been shown to improve architecture and help with sleep maintenance. There’s practically no know side effects of low dose Trazadone, just make sure you’re using a low enough dose that night time erections (and risk of priapism) aren’t an issue. Next stop, IMO, would be dual orexin receptor antagonists like Quviviq. These can be used in combination with Trazadone. They might take some trial and error as they have very different half lifes and people respond to them in very different ways, despite the exact same mechanism. Not sure if this would be contraindicated for narcolepsy.

While I appreciate the effort folks put in for OTC remedies, as someone who also has sleep difficulties, I would be shocked if something as simple as melatonin or lavender would help. Of course, now that the apneas are resolved, make sure to take care of your sleep hygiene as others have mentioned.

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#26

Narcolepsy has actually a deficiency or absence of Orexin, so Quviviq, is not the best option for me.

But big thank you!

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#27

I find trazodone by itself is more effective at reducing sleep onset time than increasing sleep continuity.
For me, the quetiapine is much more effective at promoting sleep continuity.
Again, IMO, the safety profile of quetiapine in the amount needed to promote sleep continuity is quite safe for most people.

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#28

“Does a supplement really pass the blood-brain barrier?”

I wondered about that, but I read somewhere that it acts on the CNS so doesn’t need to.

I’m sorry to be so vague but the above protocol dates from 2019 and was just personal notes to myself, so I didn’t use any references. Here’s the link to Examine:
https://examine.com/supplements/gaba/

I have found GABA did improve sleep quality moderately, so somehow it works for me. :woozy_face:

#29

Not implying anything but regular waking at 3-4 am regardless of when sleep initiated is a classic side effect of anxiety or depression, mental health issues not often raised by doctors. If nothing else works, you might try to get evaluated for those issues. Meditation and talk therapy are superior solutions to drugs, in my opinion.

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#30

I take Ambien 5 mg. at bedtime. At 79 yo, tried everything and this works great. No side effects. Sleep for 4-6 hours at a time, only 1 bathroom break a night. Like I said, tried all supplements. Losing sleep is a bigger detriment than taking drug.

#31

I understand.

But it affects also sleep architecture. So it’s a no go for me. But thank you very much :raised_hands:

#32

Thank you for your detailed answer. I appreciate your time.
I will see about the LDN, and how to get it.
I will see and maybe try one by one again

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#33

Trazodone has been shown to improve sleep fragmentation. Here’s the link.

ChatGPT - New chat

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#34

You should research ambien’s potential deleterious effects on cognition. Trazadone is a safer option if it works for you.

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#35

I started cjc 1295 and ipamorelin peptide injections at night to help sleep. 1 week later and sleep has greatly improved! Finally something is helping after 5y of no sleep!

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#36

I guess I am confused on the question here:
Do you have narcolepsy(as in been diagnosed)? Or is it more of a self observation?

In terms of sleep fragmentation, theres a lot of factors that can fragment your sleep. One factor is dim light melatonin onset (DLMO), which has been used clinically to evaluate problems related to the onset or offset of sleep. DLMO usually occurs 2–3 h before the onset of sleep and is considered the reliable marker of the circadian rhythm phase in humans . In people with insomnia, DLMO occurs later. DLMO is one of the reasons that taking melatonin without knowing your circadian phase is detrimental to your rhythms and can actually advance or delay your rhythms( this is why I am not a proponent of supplementing melatonin unless you have reliable measures of your circadian rhythm).

There are orexin agonists that are coming out that have a lot of promise for narcolepsy. One I am more familiar with is Suvorexant, which is showing alot of promise for sleep disorders, insomnia and even addiction( although more data is needed to assess long term effects), it has a pretty high safety profile as of now.

Best treatment for insomnia is CBTI, but not many people want to hear that as it involves some work.

Hard to really know though what is causing or influencing your sleep fragmentation as I don’t know your lifestyle, age, medical history, etc. I can just suggest to focus on basic principles, such as sleep hygeine and not drinking caffeine late…

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#37

Yes, I have been formally diagnosed with narcolepsy, and I also experience cataplexy, so it is classified as type 1.

I would consider myself a healthy 40-year-old—182 cm, 68 kg, with about 5% body fat (not intentional). I follow a 99% whole-food, plant-based diet, and my VO2 max is 62. I don’t take any medication and am currently focused on optimizing my sleep naturally.

I appreciate your insights on sleep fragmentation and circadian rhythms. I’m very open to CBT-I or any other evidence-based strategies that could improve my sleep quality. If you have any specific recommendations, especially in relation to narcolepsy and maintaining sleep stability, I’d love to hear them.

#38

5% body fat could be the issue? Do you have more context on that?

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#39

What info do you want?
just to put everything in the same place

I’m 182cm, 68kg, DEXA lean mass 91.1%, fat 5.2%, BMD T-score -1.4. My results have been similar for the past 15 years. I’ve never really dieted, though I’ve been 99% whole-food plant-based for the last 5 years.

My VO2 max is 62ml/kg/min.

Blood Test Results:

Cholesterol mg/dl: total 122, HDL 78, non-HDL 44, LDL direct 43, APOB 27
HbA1c 5%, fasting insulin 16 pmol/l
Testosterone 17.6 nmol/l, SHBG 60.9, free testosterone 0.243
IGF-1 154 mcg/L
CRP < 0.6, sedimentation rate 2 mm
Hemoglobin 15
WBC 2930/mcL (always on the low side)
My IgE is always elevated, currently 295 kU/L
Positive antinuclear antibody, dense fine speckled (AC-2), +320, only DFS70 is positive, all other antibodies are negative.

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#40

5% body fat is very atypical. Most people can only achieve that temporarily and at high cost to their hormones and overall health. Seeing as your testosterone is normal, that doesn’t seem to be a problem here, but unknown sleep issues are very common on the way down to 10%, let alone 5%.

My request for context was primarily because it sounded like you might have some medical reason for being at 5%. Not that I necessarily want to advocate changing something that seems to have worked for you for 15 years, but I’d be highly suspicious that it could be at least part of the problem, given your otherwise normal markers.

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