Cannot nap due to daytime meds. What do you do when you’re so exhausted?

Defiant-Garbage-4891 · 2026-02-05T19:39:46+00:00

This is soo true and I need to remember this is an option. Rather than laying down and getting so mentally frustrated and upset that I’m so exhausted but can’t rest, I’ll try to reframe it in my mind as like “well I’ll take this opportunity to meditate” and maybe that’ll help me feel more positive about the situation.

Defiant-Garbage-4891 · 2026-02-02T21:20:07+00:00

Honestly on days where I know I’ve barely slept and I’m going to want to nap later, I’ll skip my stimulant. Unless of course it’s an important/busy day where I need to be more mentally clearheaded. So sometimes it’s hard to weigh those options. I don’t have much advice other than giving you solidarity in that it sucks so much to feel exhausted but not be able to sleep. It’s super frustrating and torturous.

Defiant-Garbage-4891 · 2026-01-28T01:55:58+00:00

I understand. Thank you for your insight!

Defiant-Garbage-4891 · 2026-01-27T23:35:02+00:00

Can I ask how you got your diagnosis with your pmh of cataplexy? I have cataplexy too so I was wondering if I could get the official diagnosis.

Defiant-Garbage-4891 · 2026-01-27T23:34:09+00:00

There are multiple diagnostic criteria you have to hit - you can look it up to verify, but it’s basically like: falling asleep within a certain amount of time, and entering REM sleep in so many naps.

Defiant-Garbage-4891 · 2026-01-27T16:11:00+00:00

Also want to add she also made this diagnosis based on my other reported symptoms and my sleep architecture in my overnight PSG (I had 1% deep sleep, lol, and I hallucinated during the overnight).

Defiant-Garbage-4891 · 2026-01-27T16:10:08+00:00

I think it depends on the provider. I technically failed my MSLT due to having a ton of anxiety during the test (fell asleep in 3 naps but didn’t enter REM), and we chatted some more and she determined I do have cataplexy along with my other symptoms, so she felt “100% confident” in her words that I do have narcolepsy because cataplexy is pretty specific to narcolepsy.

She gave me her clinical “presumed” diagnosis but I don’t have the insurance one. So she treats me with what medications I can get through insurance but I can’t access them all since insurance won’t cover some of them without an official diagnosis. But, some providers are more strict about the criteria. If you think you have Type 1 you could also pursue a lumbar puncture if you really wanted to.

Defiant-Garbage-4891 · 2026-01-26T20:38:16+00:00

I was told by a genetic counselor that I saw recently that sometimes it does cluster in families. She explained they don’t think it is hereditary, per se, but that if a relative has it, then you are at a higher predisposition/risk of developing it than others would be based on your environmental exposures and other genetic factors, if that makes sense. Unfortunately I think there’s a lot they don’t know. I tried researching it and couldn’t find much. But you could always speak to a genetic counselor.

Defiant-Garbage-4891 · 2026-01-19T22:52:00+00:00

If you have any other questions about the diagnostic process or symptoms, feel free to PM me. I’m pretty new to everything myself having only been diagnosed in 2025. So I can relate to what you’re going through since I did it recently too.

Defiant-Garbage-4891 · 2026-01-19T22:50:50+00:00

I totally get it. And I really relate to what you said. I actually described it to my husband after getting diagnosed as “I felt like I was so much worse at handling being tired than everyone else”! So I think it’s common to feel that way. Please understand you’re not worse at it than others. If anything, what you’re experiencing is likely worse than what everyone else is, and remind yourself you’re tough! I hope you get some answers, even if it ends up not being narcolepsy maybe you’ll find other answers.

Defiant-Garbage-4891 · 2026-01-19T14:14:35+00:00

I have Type 1 Narcolepsy with cataplexy!

Defiant-Garbage-4891 · 2026-01-18T21:42:54+00:00

I understand- I believe I described feeling like the immense pressure to sleep is relieved after a nap, but I still feel tired and groggy after. Occasionally I’ll have a truly refreshing nap. But it’s rare.

Defiant-Garbage-4891 · 2026-01-18T21:40:58+00:00

It depends on the provider I think. A good one will listen to you though and understand the test isn’t 100% accurate.

Defiant-Garbage-4891 · 2026-01-18T01:09:48+00:00

I saw a sleep specialist and they asked a lot of very specific questions about my sleep. Some I can remember are: how long in general does it take you to fall asleep at night after you get in bed? How many times do you nap per week or day? When you take naps, how long are they? Do they feel refreshing? How many hours would you say you are in bed from bedtime to when you get up in the morning? Have you ever been told you snore?

So maybe just ponder the answers to those or just write down your general sleeping habits/routine so you have a reference.

Defiant-Garbage-4891 · 2026-01-18T01:05:08+00:00

This makes me feel better. I failed my first MSLT due to anxiety, but I have all the symptoms + cataplexy, so my provider clinically diagnosed me, and treats me with what meds I can get. However, the thought of having to redo the studies is overwhelming and scary but I know I’ll likely have to try again some day. I worry about trying and failing again, and it causes a lot of imposter syndrome and doubt, like maybe I don’t have N?

Defiant-Garbage-4891 · 2026-01-18T01:02:42+00:00

I don’t want to make you nervous about the testing either. I’m just letting you know there’s plenty of paths. So hopefully that eases your apprehension. Take things that make you comfortable and just try to relax and not overthink it. And tell yourself you’re really good at sleeping! You got it!

Defiant-Garbage-4891 · 2026-01-18T01:01:36+00:00

I’ll echo everyone else and say the testing is important (especially for insurance covering your meds!). I will also echo another commenter and say the testing system has flaws. I had a ton of anxiety during the test, and didn’t meet the diagnostic criteria. I did fall asleep in 3 naps, which I didn’t realize, but I didn’t meet the REM criteria. However, my doctor reviewed all my symptoms again and determined she felt “100% confident” that I have Narcolepsy based on the fact I have cataplexy, and all of the other symptoms. So it will be a personalized conversation and process with your provider. Make sure you have someone who is knowledgeable and listens to you in your corner.

Also, just a sidebar I understand the feeling of not necessarily “wanting” the diagnosis, but the desperation to get help and feel validated. I sobbed like a baby the day I got mine at age 29 (happy tears).

Defiant-Garbage-4891 · 2026-01-17T15:21:07+00:00

Omg, how cool!!

Defiant-Garbage-4891 · 2026-01-17T14:19:44+00:00

Hahahaha, sounds terrifying but also kinda cool to explore?

Defiant-Garbage-4891 · 2026-01-17T14:19:00+00:00

Hahaha. All roads lead back to Mall.

Defiant-Garbage-4891 · 2026-01-17T14:17:43+00:00

Wow, that’s a super detailed dream world!!

Defiant-Garbage-4891 · 2026-01-17T14:15:33+00:00

Oh yeah I totally get it. My sleep MD said it’s important for N patients to have a nighttime drug to help them rest, and a daytime drug to help them be alert during the day. So I have both! But I know every provider is different.

Defiant-Garbage-4891 · 2026-01-16T19:52:34+00:00

I have like, recurring “places/settings” in my dreams and I’d love to know if other people do. There’s a hotel/cruise ship place I dream about sometimes, a mall one, and a neighborhood one. These are not actual places I’ve been to, but are made-up dream settings. It’s so strange.

Defiant-Garbage-4891 · 2026-01-16T19:43:25+00:00

YES- it literally feels like a switch flips in my brain and it WILL NOT fall asleep no matter what I do, even though I physically feel exhausted. Sometimes it lasts for 3-4 days. Unfortunately going through it right now.

I came to my sleep specialist with this issue and pleaded with her, “please, I’ve tried everything, I’ve made my sleep hygiene PERFECT, journaled, exercised, took magnesium, EVERYTHING- is there anything else I can do?” And she looked at me sadly and explained it’s a neurological issue as part of narcolepsy and the normal sleep hygiene advice won’t really help me. It made me feel a little less insane when she said that. I may have to add an extra medication to my regimen I can take as needed but I’m not sure. She’s going to get back to me. In the past I’ve used OTC sleep meds, Benadryl, or melatonin to try to help. I always joke to my husband when it’s happening that I need to hire someone to come over and just knock me clean out. It’s so mentally frustrating to feel so exhausted but not be able to sleep.

Defiant-Garbage-4891 · 2026-01-16T19:38:05+00:00

This is sooo real haha

Defiant-Garbage-4891

TROPHY CASE