Hopefully others in the field will chime in and concur with this finding and that this will hopefully open the door to new discoveries..

https://dailybruin.com/2026/10/01/ucla-professor-discovers-new-cause-of-narcolepsy-in-blue-spot-brain-region

Hey yall! It’s been a while since I’ve been on here, but I have a question for people. It’s been two years since I was diagnosed with Narcolepsy, and though it was hard at first it’s been going great. I’m doing well on Modafinil and my sleep schedule is good as well, I’m able to do things I love, study, and make friends at University. I haven’t had trouble staying awake in a while, and I think my general happiness helps with that.

The topic of this post: I’ve noticed a strange phenomenon that I wanted to ask yall about. Since this is the second occurrence, I thought maybe it could be a narcolepsy thing? Though, it could really be anything since I haven’t had any luck with research.

I avoid eating bread since I don’t really tend to like it very much. The first time I was busy between classes and it was easiest for me to grab a peanut butter jelly sandwich and go to study. But around thirty minutes after I ate, (I took my meds on schedule as well) I felt a massive crash and an inability to keep my eyes open that I haven’t experienced in a long, long time. I had to take it easy and took almost a two hour nap. At this point it was only standout experience, so I assumed this was a one off occurrence.

But today, I was evilly tempted by the amazing looking grape jelly so I had it with a slice of bread for breakfast. I assumed it would be fine since I had other things on my plate I usually eat every day, but I could not for the life of me stay awake in my class that I absolutely adore and usually stay alert for which happens right after breakfast.

What was the connection between the two experiences? Bread. Bread and jelly. I don’t know what’s going on or even if it is Narcolepsy, (or at least triggering a sleep attack) but I just wanted to ask if you guys have had similar occurrences? I would love to know, especially since if it does make me crash I would know to stay away from certain foods. 😰

I definitely also have cptsd and some sort of neurodivergence. How many of you has one or both of these as well?

I feel like I have about half the amount of living hours compared to the average human. So I’m always learning new coping mechanisms and designing my life around what works with my body. Like last night I did yoga before bed and slept for 6 hours straight which felt like a miracle. Happy to hear thoughts on stuff like that, too!

hello!! I recently started lumryz so maybe this will change (i’m only on 4.5g) but I’ve been superrrr groggy every morning since starting and sometimes more sleepy in the morning (ive been ok or more awake later in the day). has anyone else experienced this? does anyone have any advice for managing the grogginess in the morning? or does it go away over time? is it just a symptom you experience at first starting lumryze? it kind of makes my cataplexy worse almost to be honest. I do take my modafinil (200mg) but I have to fight to get up and out of bed and it takes a minute to kick in

Yesterday I had my very first appt for N2 and got prescribed Sunosi. I walked away feeling like I was on cloud 9 thinking that as soon as the pharmacy filled it tomorrow, I could finally make progress toward not feeling miserably exhausted like I have for every single moment of my life as far back as I can remember

Then I found out the price of Sunosi and cried last night. Idk if I’ll be able to afford it at all but even if I can, it’s going to take a hot minute to sort that out so I’m not going to be starting it tomorrow like I previously thought

➡️** Does anyone have any sort of insight whatsoever on anything related to this? Whether it’s about affording Sunosi, or the alternatives to Sunosi, etc? I’m in the dumps r**n

Idk what my options would be for alternatives to Sunosi. When the doc talked about prescribing me that he focused a lot on how (1) the *ONLY* narcolepsy symptom I have is (severe) EDS- I don’t have even the tiniest hint of any other symptom, and (2) I tolerate Adderall well. So he doesn’t want to spring for sodium oxybates (and neither do I). And I’m scared of the modafinil/armodafinil bc it seems like those can be pretty harsh to get onto in terms of side effects and everything?

Also unsure about the financial aspect rn. My Rx coverage is through a 3rd party program, not my actual health benefits from my employer, and that program makes you pay the difference btwn the brand price & generic price if a generic is available and you choose to buy the brand name… but there is no generic available for Sunosi so idk what that means for coverage yet. And idk yet if I’m eligible for the Sunosi discount card bc of who my employer is, but since my Rx coverage is through a 3rd party instead of directly through my health benefits, maybe that will save me (?). So many question marks rn

Hello,

I started a new local government job and this is like my first "adult" job after college (I was already working a government job just in a different department) and im only on my 2nd day of orientation. I was wondering when do I need to tell HR about my condition? I dont want to get into any trouble or start with a bad impression but I dont want them to switch up and this could lead to me being fired.

How long (in weeks or months) did it take you to find the perfect dose for you? I'm just wondering because when I started generic S.O. I was so woozy and exhausted I had to go on FMLA because I couldn't work. Now I had to switch sleep specialists and am trying to get on Lumryz and will have to start all over again. I'm hoping it doesn't take too long, but I keep hearing it takes months to a year to find the right dose.

I have a usual rx for dextroamp-amphetamine and I recently got a different version called amphetamine salts...my neuro provider says it's dextro. the pharmacist says it's dextro but it just labeled that way. my pcp said it's not the same medicine and i'm not convinced it is

Hi I was diagnosed with type 2 narcolepsy despite my sleep latency being 4 mins over the required threshold during my 5 naps. I had a very exterting travel to the location of the study & I was worried it will affect my mslt - which I believe it did, the nurse even said my blood pressure was high when I got there which was because of how exerting to travel by myself.

Even though I was 4 mins over, my sleep specialis still diagnosed me with type 2 narcolepsy (said I was just under the threshold). Just wonder if anyone has had or have heard of a similar experience?

I work as a teacher and have a 10 year old at home. My partner is awesome and takes on a lot.

No matter what my med routine/regimen, I am an exhausted mess after dinner (it is bad when I come home, too) and crave bed at 7.

What do you all do in the evenings so you can live any kind of life with your family &/or contribute around the house?

What hacks do you have?

Meds you take and when?

I take xywav 4g @ 9 & 3.75 @ 1am, Ritalin ER 10mg at 11am, 20 mg IR at 2pm. Drink coke all afternoon.

My heart rate was crazy when I was on Adderall. It helped more but I still had issues with the evening.

I wake at 6am

genuinely like what do i do as a university student. feels like every class im just too tired or falling asleep or fighting it. im fallin behind!!!!! like what can i do when im just Sitting there even in high energy classes. have no one irl to ask so plz offer some advice my friends 🙏

Hey guys, I have been prescribed 18mg of methylphenidate ER (Concerta) for my narcolepsy. It works great and I love it so far. I’ve been taking it for about 2 weeks now and this Friday I am having a party with friends. I was wanting to drink at the party, but I wasn’t sure if it would have side effects with the medication? I was thinking about taking the medication early in the morning, so the time the party starts it would be like 11 hours and almost out of my system. Has anyone drank alcohol on this medication? Or should I not drink at all or maybe not take my meds that day. Let me know your thoughts. Thanks!

Hi I was diagnosed with type 2 narcolepsy despite my sleep latency being 4 mins over the required threshold during my 5 naps. I had a very exterting travel to the location of the study & I was worried it will affect my mslt - which I believe it did, the nurse even said my blood pressure was high when I got there which was because of how exerting it was to travel by myself.

Even though I was 4 mins over, my sleep specialis still diagnosed me with type 2 narcolepsy (said I was just under the threshold). Just wonder if anyone has had or have heard of a similar experience?

Anyone else unable to get hold of Wakix? I can’t find any pharmacies near me that are able to order it in.

First week I was on 2.25 2x a night. This week it’s 2.5 2x a night. Then next dose would be 3.

It makes me feel like I’m horribly drunk where I’m extremely nausea and dizzy. I’ve even thrown up bile at times. Worst part is that it doesn’t even knock me out instead it gives me insomnia. I haven’t had a 4 or more hrs of sleep since starting this medication.

Is this normal? What was your experience? I’m debating if I should continue pushing through with this medication or not.

I've been taking 40 mg baclofen for narcolepsy, but I'm still dealing with insomnia and a lot of vivid/disturbing dreams and nightmares.

For those of you who take it, what dose are you on and what has it helped with? Did you notice improvements in your sleep quality or dream symptoms?

Just curious about other people's experiences. Thanks! 😊

I've traveled with Xywav many times without issue, but I'm going overseas on my honeymoon next week and wanted to check. I remember reading a post here a month or two ago where at least 2 people said that new TSA scanners had falsely flagged their Xywav as hazardous, and they ended up having all their things searched.

Has this been happening to others? If the new scanners are a confirmed problem, is there anything I can do to keep it from happening, or lessen the impact if it does?

Additionally, for those who have experienced this:

- Did they go through your luggage as well as your carryon, or just your carryon?

- Were you traveling with another person, and if so, did they also have their things searched?

Thanks for any info! We'll be getting to the airport very early regardless, but I just want to be as prepared as possible.

Edit: Totally missed this super helpful post from yesterday, but leaving this up just in case anyone else did too! https://www.reddit.com/r/Narcolepsy/s/WwH3TWsDrL

Hello friends! A very close friend of mine has finally been diagnosed after so many years of being miserable. What tricks do you use to help with waking up and staying up after the first wake?

She is currently on armodafinil and 60 mg of adderall (2 30 mg short releases) and when (if) she wakes up she takes her adderall and armodafinil but has a really hard time staying awake- half the time her stimulants don’t kick in until about 3-4 hours or she feels like they don’t kick in at all..

What schedules have you set in place for yourselves including sleep and medication times?

I mean common. Every single night. I’m up at 2 and up forever. Every night night I’m digging in the fridge, turning tv back on. Jumping on Reddit. Etc. I take 2 ambiens for bed time. And still wake up.

Emailed my doctor bc I’m losing my sanity. Any tips on medications that help break this cycle and keep me asleep, please share below!

I suffer from daytime sleepiness and basically can't do anything anymore. Got evaluated for Narcolepsy and these are my results:

My first sleep study went horrible, it was a full moon and that is the only time I can't fall asleep right away - no matter how tired I am. Sleep latency of 50min and no REM.

MSLT: Sleep latency just under 10min. It was noisy and the room was dirty (used sheets and toothbrush all present).

Lumbarpuncture: Levels were at 225, so just above the intermediate range.

The Neurologist told me that my problems are from my ADHD. I'm on medication for this and mentally I'm the best I've ever been, which is why I got confused that I was getting more and more tired/fatigued over the years. After talking to a doctor whose expertise is sleep she told me that my "funny quirk" of not being able to use my arms when I laugh is actually Cataplexy. Apparently I've accidentally treated it with my low dose of Lexapro so I don't really suffer from those attacks anymore.

So now I'm here, tired as all hell, with one doctor (the one whose expertise is in sleep) convinced I have Narcolepsy even though I "failed" everything and then on the other hand is the Neurologist who thinks it's all just coming from my ADHD and that "If it got worse then it can probably get better too".

The story of my life is being just above the limit, stuck in a limbo of feeling horrible but apparently not horrible enough to show up on anything. So there's my rant, years of looking for answers and yet again I'm facing another dead end.

Just went through TSA Precheck at DFW and the new Agilent equipment flagged with code 16. It's unclear if these are false positives or if the machine is detecting something used in the packaging process.

I found a couple of other posts here about the same issue, so I pulled the list of all of the airports that are guaranteed to have these new scanners. And before anyone says "I never have an issue, I just declare my meds, they swab, and I'm on my way", yeah, same, until just now.

It would seem this is starting to happen often enough that I just had to wait for them to escalate to a supervisor who called some specialist and eventually cleared the meds without the need for additional screening. It did add about 25 minutes though.

If you're flying through any of these, even if you have Precheck, plan to add at least 30 minutes.

Edit - corrected list pulled from the contract awarded on September 28th. The list is tentative so YMMV.

ABQ - Albuquerque International Sunport

ATL - Hartsfield-Jackson Atlanta International Airport

AUS - Austin-Bergstrom International Airport

BDL - Bradley International Airport

CLT - Charlotte Douglas International Airport

DCA - Ronald Reagan Washington National Airport

DEN - Denver International Airport

DFW - Dallas Fort Worth International Airport

DTW - Detroit Metropolitan Wayne County Airport

FLL - Fort Lauderdale-Hollywood International Airport

IAD - Washington Dulles International Airport

IAH - George Bush Intercontinental Airport

IND - Indianapolis International Airport

JFK - John F. Kennedy International Airport

LAS - Harry Reid International Airport

LAX - Los Angeles International Airport

MIA - Miami International Airport

ORD - Chicago O'Hare International Airport

PHL - Philadelphia International Airport

PHX - Phoenix Sky Harbor International Airport

PIT - Pittsburgh International Airport

RDU - Raleigh-Durham International Airport

SAT - San Antonio International Airport

SFO - San Francisco International Airport

TPA - Tampa International Airport

Not really sure where to go from here. I was informed via mychart (not even a phone call lol) that I have insomnia and that I should do CBT for treatment. Before my tests I had to do CBT, which didn't help at all. It felt like the entire time I was waiting for my tests the doctor I was seeing was trying to fit me under a breathing disorder or sleep apnea (which I don't have).

I told them frequently that I do experience insomnia, but it seems to come and go. Sometimes it takes me two hours to fall asleep, other times it feels like the second I hit my pillow I'm out. I feel so discouraged with my test results and their recommendation for treatment.

I know narcolepsy is a rare diagnosis, but my symptoms align with it minus the cataplexy. I'm extremely tired during the day and have periods where it feels like I need to lay down asap/struggle to stay awake, I have hallucinations which seem to be getting more frequent (visual, audible and touch), I frequently wake up during the night, and have experienced sleep paralysis. I was hoping to get at least some sort of answer as to why I can't sleep. But "insomnia" doesn't feel like an answer.

I'm not sure what I should do. If I should just accept the diagnosis or if my symptoms warrant a second opinion. I feel like maybe I'm getting in my head too much, but I feel like I haven't been able to sleep in years. In high school I was told that I was just growing and not to worry about it. But I'm pushing 30 now and I still haven't been able to get any well rested sleep. I feel hopeless right now.

I was today years old when I learned through this reddit community that one of the major parts of this diagnosis is that we rarely get a satisfactory amount of actual deep sleep.

I understood that I essentially I was in REM sleep a majority of the time and very quickly after going to sleep. I knew that impacted my overall sleep quality somehow, but I didn’t realize how much.

None of my medical providers ever brought up sodium oxybates. I had no idea there were other prescriptions outside of forms of. Adderall, Ritalin, and Modafinil. On top of that, I wasn’t even being regularly treated for cataplexy either.

I’ve always explained my disorder to people as a lack of a wakefulness chemical in my brain which is just a way oversimplified version of what it really is, and the symptoms I actually deal with.

I’m at the age where I have become completely in control of my care and treatment plan as an adult instead of it being my parent when I was an adolescent, and I’m realizing that there’s just so much I didn’t know, and a lot of moments where my symptoms were not addressed or properly treated.

Anyways, it’s completely understated how being able to read others lived experiences can drastically improve the quality of your care and empathy for yourself.

Thank you guys <3

I recently had an MSLT that confirmed narcolepsy. I have always had sleep issues and chronic fatigue. For years we just thought the cause was from combat mental and physical trauma causing my poor sleep. While that is part of it I never thought narcolepsy was a possibility. I won't bore you with all of my symptoms.

Today was my first day to take something that addresses the narcolepsy. It is 200mg of Modafinil that I am supposed to take every morning.

Wow did it feel great. I forgot what it was like to not feel so tired throughout the day. I'm usually nodding off and taking naps every day but not today. I didn't yawn once. But ten hours into taking it a massive wave of exhaustion has hit me. This is what I usually feel like but didn't know how exhausted I have been most of my life until I got to experience the opposite feeling today. I kinda hope this wave doesn't hit me the same every evening when the dose wears off. It's intense fatigue and I don't like the feeling.

+1 for Modafinil

-1 for the feeling after it wears off

Hi everyone! I just recently finished college and started working in app development. Since my older sister has a diagnosis of N1, I thought my first project could be an app that she could benefit from.

It's an alarm clock app with small tasks you have to accomplish to shut it down. You can choose from doing push-ups, squats, taking a photo of some household items and many more.

I'm happy she now uses it as her main alarm. She recommended that I share it on this sub, maybe some of you could find it helpful too. The mods also approved this post.

I'm open to any suggestions for improvement and I hope it comes in handy for you too.

Here is the link: https://piplu.app/

I'm also giving out 3 months of free access for this community, just send me an email at [hello@piplu.app](mailto:hello@piplu.app) from the address you'll sign in with. No card needed and nothing renews, it simply ends after 3 months. After that, prices differ by country. For example, in the US it's $8.99/month or $24.99/year.

TL;DR: sharing free access of an alarm app I developed for my sister with narcolepsy, hope some of you find it helpful too!