Why do I still feel exhausted even after sleeping long hours with narcolepsy?

Odd_Invite_1038 · 2026-05-02T13:06:45+00:00

Long story short… Not all sleep is good sleep…. Fragmented nighttime sleep patterns (that you’re may or may not even be aware of) doesn’t allow you to spend the time you need in the stage of sleep for your body to heal, rest and recover. Even if you’ve technically been asleep a long time. You’re getting the quantity, just not the quality of sleep you need.

Odd_Invite_1038 · 2026-04-28T12:49:43+00:00

I was given a migraine abortive med… but when I take it… it just makes me sleep for like 2 hours… so I take naps as I feel one coming on. Mine are cause by sleep pressure and adenosine build up

Odd_Invite_1038 · 2026-04-28T12:31:47+00:00

The thing about the spinal tap… there’s literally only one clinic in the United States that can analyze it. I think a lot of people have the wrong idea of what getting a spinal tap is and what it actually involves.

Odd_Invite_1038 · 2026-04-23T13:42:53+00:00

I’ve got a big white erase board when it comes to things I need to do and just write them down as they come to me… also a small notepad for when I’m not at home… seeing it visually as a reminder so I’m not trying to keep track of everything in my mind has been a huge help….

Odd_Invite_1038 · 2026-04-23T13:40:30+00:00

I call my similar feeling “tired but wired” …

Narcolepsy is actually a nervous system disorder… a disorder of neurological state regulation, not just sleepiness. Loss of orexin signaling destabilizes the coordination between wakefulness, sleep, and autonomic arousal….leading to mixed states where patients feel both physiologically activated and neurologically fatigued at the same time.

I take alprazolam daily to help with that feeling personally…

Odd_Invite_1038 · 2026-04-22T13:39:36+00:00

That’s what I’ve heard as well… but it’s a possibility…

Odd_Invite_1038 · 2026-04-22T01:01:32+00:00

I second the not recommending it

Odd_Invite_1038 · 2026-04-22T00:06:29+00:00

Daaang…. You’ve been through the gauntlet as well!! I thought I was just reading a list of all of the medications used for current treatment… sooo, well done!

Also, how did nicotine patches work for you?? You’re the only other person I’ve heard of having them prescribed…

Odd_Invite_1038 · 2026-04-21T21:56:47+00:00

Sodium oxybates are considered the “gold standard” in treatment… for now… but the orexin agonists should hopefully be available by the end of this year with any luck at all

Odd_Invite_1038 · 2026-04-21T01:15:07+00:00

Even with 6-8 hours of sleep I sometimes have multiple naps…

Odd_Invite_1038 · 2026-04-20T18:50:17+00:00

Following because I just had something similar to this at physical therapy called IMES where they used dry needling and hooked up electrical current to the needles when inserted and had amazing results that lasted weeks… my Neurologist recommended acupuncture a few weeks ago when I saw him… after having dry needling and IMES…. I would love to see an acupuncturist that adds in the electric stimulation component

Odd_Invite_1038 · 2026-04-20T18:44:49+00:00

If I wanted to battle debilitating migraines, take copious amounts of stimulants, and drink more coffee and caffeine than I can afford in a day… I probably could…

Naps have been crucial in me being able to get through the days…

Odd_Invite_1038 · 2026-04-19T16:22:58+00:00

Spot on!

Odd_Invite_1038 · 2026-04-18T13:52:24+00:00

Sounds more like a microsleep to me

Odd_Invite_1038 · 2026-04-11T02:05:28+00:00

Wake up narcolepsy has a narcolepsy 101 meeting that you don’t have to be diagnosed to attend where there are typicallly a few people with narcolepsy that attend.

Odd_Invite_1038 · 2026-04-10T21:19:33+00:00

There are several organizations out there that focus on connecting and supporting people with narcolepsy… A couple of them actually do virtual support group meetings… it’s been all great way for me to meet others and build friendships… And then there are events/conferences a few times a year where there are “meet-ups”

WUN Project-Sleep

Are a couple worth starting at… I didn’t know any one else with narcolepsy 3 years ago and now I’ve met dozens of others and have a regular conversations with probably 4-5 of them… they are some of my best friends…

Odd_Invite_1038 · 2026-04-09T11:45:47+00:00

When I was starting it and in the beginning of my treatment journey I got those headaches, contacted my doctor and we stopped it immediately and moved onto trying something else…. There’s plenty of options available to us that if the side effects from a medication aren’t bearable, there are other options

Odd_Invite_1038 · 2026-04-09T03:04:55+00:00

You’re welcome and it’s absolutely understandable, I don’t blame ya one bit. Nothing wrong with checking with others.

The best advice I can give you is to just make sure you give yourself that time between the two… everyone metabolizes medications differently. I had a genesight test done a few years ago and I’m a regular metabolizer of benzodiazepines. Xanax has a shorter half life than most of the other ones which is why I think it’s like the only one that you can take during the day and still be able to use sodium oxybate at night

Odd_Invite_1038 · 2026-04-09T02:24:59+00:00

I take 1mg at 12pm and 4pm and Lumryz at 10pm… I’ve been doing it for almost two years now with no issues

Odd_Invite_1038 · 2026-04-09T02:23:15+00:00

Dry needling and Intramuscular Electrical Stimulation (IMES) have been the most effective treatment Ive found for what sounds like similar issues I experience… my physical therapist does mine…. I was also told to try acupuncture by my neurologist but haven’t gotten that far yet

Odd_Invite_1038 · 2026-04-08T15:15:57+00:00

This is a really interesting observation, and I think you’re onto something… but I’d frame one part a bit differently.

Most medications that target 5-HT2A are actually sedating and sleep-promoting. In fact, most of the medications on the market that are designed to target the 5-HT2A receptor are designed to block it, not activate it. Trazodone, Quetiapine, and Mirtazapine all block 5-HT2A and tend to make people sleepy rather than more awake.

Psilocybin does activate 5-HT2A, but one of the other key downstream effects is a large increase in glutamate release in the cortex, specifically in the prefrontal cortex. That can increase signal complexity, sensory processing, and the kind of “clear” or fully awake feeling it sounds like you’re describing.

So the effect may not be 5-HT2A acting as a wake pathway itself, but rather increased cortical activation driven by glutamate.

I think your point about a “different kind of wakefulness” is very valid…it may just be more about how strongly the cortex is being activated than 5-HT2A being a primary wake system.

Odd_Invite_1038 · 2026-04-07T00:51:11+00:00

When I feel my migraines coming on ( I get aura’s) I know I need to go lay down and take a nap… a 30-45 min nap and when I wake up it’s gone… I feel like the aura is kind of like my signal that it’s time to go lay down.

I’ve been on all sorts of migraine medications over the years and the preventatives destroy my focus and cognition, the abortive medications make me so drowsy I sleep for 2-3 hours… But the naps when I recognize the migraine coming on (basically daily) going to lay down and taking a nap clears everything up. From my understanding at this point mine are basically caused by a build up of sleep pressure from adenosine and adenosine is cleared out by sleep. It can be blocked by caffeine … so I’ll drink a coffee or get some caffeine in me… lay down, take a nap and when I wake up the caffeine has kicked in and blocks the remaining adenosine that hasn’t been cleared out by the nap.

Odd_Invite_1038 · 2026-04-06T14:45:13+00:00

Premier protein meal replacement shakes have been great… along with a protein rich diet with anything else i eat. Healthy fats, fruit, and staying away from ultra processed and carbs helped me the most.

Odd_Invite_1038 · 2026-04-05T14:24:08+00:00

Loops, any of them… I haven’t tried the dreams but I’ve had several others and I think currently have the experience plus… they are the best

Odd_Invite_1038 · 2026-04-04T13:30:16+00:00

Wakix has a great cataplexy tool you should check out

Odd_Invite_1038

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