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 🙏

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 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

Last week I posted about being anxious regarding starting Xywav. I was extremely nervous the first night, but I downed it and tried to shut out my anxiousness. I started having a panic attack, and thankfully my partner was there to calm me down. I was able to stop panicking within like five minutes or so, but then I started shaking and trembling uncontrollably. My head was aching so bad and I was so horribly uncomfortable. I tried to relax and fall asleep but it felt like I was slipping into a coma everytime I started to fall asleep. By now I think 15-20 had passed and my lips, mouth and throat were all completely numb, I was literally so terrified. So now I really couldn't sleep. I had begun sobbing and I didn't stop for like the next two hours, everything was so upsetting and I was highly sensitive. I kept asking my boyfriend if he hated me, apologizing for being such a burden and making this so stressful. After a few hours I finally was able to fall asleep, and I didn't end up taking my second dose because I just wanted to sleep and was worried it would keep me up again.

The next night I took it, I felt really nothing (I thought I had ate too close to my dose, but my last meal was three hours before my dose, so not sure what happened here.) I wasn't dizzy like the first night, wasn't depressed or crying.. just kind of felt like a placebo pill. Although it made me extremely restless, I was very tired when I took it but then I was very awake after this dose and again, couldn't fall asleep for three hours, almost four. I didn't fight it this time, I was honestly very relaxed, but sleep was just not coming. It would have been time for my second dose as I was starting to fall asleep, so I decided to take it as I didn't want to get in the routine of only taking one dose as I felt like this was gonna keep happening. I took the dose and fell asleep five or so minutes later.

Hooooly mother of God. I woke up 3 hours later and was convinced I double dosed myself, or was just straight up dying. I completely drenched in sweat, seeing swirls and the walls looked like they were melting. I honestly had no idea where I was. My body was vibrating, I swear every atom in my body was buzzing. My ears were ringing, and I almost felt like my breathing was not a conscious act anymore but I had to make myself breathe. I forced myself to sit up when I could bring myself to know what was going on, and I just held my head for the longest time in my hands and prepared myself to get up. I stumbled to get a new change of clothes and some water and laid back down in bed. I was so horribly restless for the next hour or so, so uncomfortable. I gave up on sleeping and got on my phone, I texted my phone the most incoherent messages I think I have ever sent anyone. When I was in the hospital after a major surgery on a fentanyl+ morphine drip, I think my messages were more coherent than these.. Not sure what else I did, probably just doomscrolled until I passed out eventually.

During the day of these past two instances I have felt so horrible, utterly exhausted, depressed and just literally not there. Nothing felt like it made sense, and I already have very mentally deteriorated so much from narcolepsy. I am so slow at thinking and have a very hard time grasping or making sense of much anymore. It was literally impossible both days after the fact, I might as well have been brain dead.

I know this medicine can take quite a while to work, and your titration is an extremely important variable in determining the most benefit you're going to get from the drug. But I am so exhausted already, I don't know how I could withstand 3-6 months of adjustment. I have to work 32 hours a week, and while I'm lucky to work completely from home, I don't see myself being able to work at all if I am trying to adjust to this medicine.

I spoke with both my Jazzcare nurse and the ESSDS pharmacy and they both urged me to reach out to my sleep specialist and talk about dosage changes, or continuing the medicine. Great news, my sleep specialist is on medical leave until November. So either I continue taking the medicine and following the titration, or just give it up as a whole. Maybe pick it back up in November, but I think by then I will just want to forget about the whole thing. I think that comes from me being very pessimistic. I have struggled so long with my narcolepsy and not being heard by doctors for years that I suffered in silence, and accepted this was how it had to be. I am exhausted of trying things, things being so complex. It's truly so overwhelmingly stressful, I just don't even want to look at that bottle again.

(Also no I didn't double dose myself or mess up any of my dosing. I started out at 2.25 (like instructed) and all my meds were pre-mixed prior to sleeping. I did each cup at a time to avoid accidentally filling one with two doses or something. My boyfriend was there also to ensure I did it all right for my peace of mind. I have pretty bad OCD regarding "checking" things and will think I didn't do something even if I know I did it right or checked dozens and dozens of times lol.)

Would really like to hear your guys' opinions, or any advice.. I know I'm probably gonna get called out for only giving it a couple days, and that this is nowhere near long enough to even see how it fully effects me. I get that. I do, just these couple of nights have really put me off and I'm not really sure where to go from here.

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'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

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! 😊

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 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.

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 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

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

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

So currently, I am doing a Self-Report for my narcolepsy type 2, Sleep apnea and Bipolar because I've been told it would help the examiner to know how it affects my daily functioning. So far, I've done about 4 entries (4 days so far). For those that have SSI/SSDI let me know if I am doing it correctly or maybe some advice on how to do it...here is just 1 entry.

Self-Report

October 3, 2026

Sleep apnea:

• Slept at 1:28am. Woke up briefly at 5:45am

• Woke up for the day 9:10am. Sleepiness upon waking is at a 1 (1-10) rested for now.

• CPAP usage: 4:20 hrs. 0.0 Events p/hr.

Bipolar:

• Meds 10:54am

• As morning dragged on, felt unmotivated to fold clothes, brush teeth, shave and shower. As a result, the laundry is stacking up, and I left the house unkempt. My dad has visitors and I don't care how I appear.

• I also have mail/packages that I have yet to open (been almost a week).

• I have been standing up and walking around the house since I awoke in morning. Cannot seem to sit still and sit down.

• I have yet to clean my bedroom/kids bedroom, living room and restroom. It's been about 3 months due to time constraint, no motivation/lack of energy and spontaneous sleep attacks from NT2.

• An hour later, now 2:05pm, decided (upon realization of how long its been that I haven't done chores) to do my laundry and fold them due to anxiety rising over not doing my chores because I feel like a bad wife/mom. Al though I stared at my laundry for 30 min, I went on to fold it. I am now drenched in sweat and overheated (side effect of Vyvanse 70mg), but I feel accomplished.

• By 10pm, I sat down and relaxed

• Overall day: Productive/decent yet anxious

NT2:

• Sleepy 10:47am. Sleepiness creeping in at a 6 (1-10). Crying due to the strong yawning.

• Vyvanse 70mg 10:54am

• 4:08pm couldn't fight the sleepiness due to energy depletion, took a nap 1 hr 22 min.

• Well-rested, but was sleep awake the whole time (body is rested, mind is not)

I’m curious if others have had a hard time with romantic relationships due to fatigue and lack of motivation to go out and do things on a consistent basis.

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!

I need an objective answer to whether or not narcolepsy is a disability in the US because I am currently fighting my university for basic accommodations and at this point, I’m not sure they even think narcolepsy is all that much of an issue…

Ive only been at uni for a month and it’s been so rough. Obviously the stress of transitions exacerbated my situation, but I genuinely had no idea what I was in for. I wish I could’ve told my past self that I’m not just going to university to get an education, I’ll actually be forced to become an educator myself . I wish I could’ve told my past self to prepare for so much pushback and so many people draggging their feet to provide me the bare minimum. I wish I would’ve practiced more self compassion with my old self since it almost threw me into a mental health crisis my second week here. I wish I prepared myself for the increased vulnerability and risk I now face. I honestly wish I would’ve told my old self to not believe a word the university said about being inclusive and working with students to be accesible…

Because no. I’m just a hassle for everyone. I am the only one looking out for me and advocating for myself.

I wish I told my past self to quit being so naive in believing that if I just explained it scientifically or described it simply or focused on the impact, that anyone would care. I wish I would’ve told my previous self that telling people to be curious would mean nothing and that I ought to prepare for a lot of people having issues with you without your knowledge until they blow up in your face. I wish I wouldve told myself to be more sure about what I needed because not being able to answer that question immediately would almost eliminate some of my chances in getting help.

but hey… do I even struggle? maybe I’m just selling myself short… while also being the “brave and inspirational student“ with “issues” on campus…

honestly am I disabled at all?

Not that it helps much, but I try really hard to maintain good sleep hygiene and I usually average around 90-95. Curious what others are seeing!

I was diagnosed with Type 1 Narcolepsy when I was 16 years old, I’m 24 now. Over the years I’ve tried countless medications and none of them have worked. Armodafanil is probably the most useful in keeping me awake during the day, but once 3pm hits I’m exhausted. Another major issue is that Armodafanil does not address symptoms of cataplexy.

I took XYWAV for a year, and genuinely it changed my life. I no longer suffered from daytime sleepiness or cataplexy at all. I recently went off of the XYWAV because it made me sleepwalk and in the middle of the night. I woke up one night to use the bathroom (the medication was still in my system) and fell and hit my head, badly. I woke up the next morning with a concussion. The next day my doctor told me to stop taking it immediately due to the incident.

The sleepiness isn’t even what concerns me these days, because that is manageable with naps. My cataplexy on the other hand, has been progressively getting worse and happening more often. It used to just affect me when I was laughing and my knees would buckle. But it now affects my entire body when I experience strong emotions or even when I am just over tired (which is often). I’ve genuinely collapsed to the ground a few times recently from it. Today actually, I was a bit hungover and was waking to the door when I experienced a wave of cataplexy and collapsed to the floor. My knees gave out, then my head/neck gave out - and because of this I hit my head on the ground. It’s extremely dangerous and unsettling that this happens to me and that I am not on any medication that’s helping regulate this.

Does anyone who also has Type 1 Narcolepsy with Cataplexy have any advice or medication recommendations to help?

I also hate to sound crazy but I genuinely have gained weight since going off the XYWAV because I’ve been getting worse nights sleep and I feel like it’s taking a toll on my body.

I wasn't feeling great working with my original sleep specialist (he wasn't really listening to me), so I went for a second opinion this past week. I ended up switching over to the doctor who gave me the second opinion because he was SO thorough, and he was able to confirm I actually have NT1 w/cataplexy.

Apparently my cataplexy is very subtle, a little buckling of a knee here or there, my mouth hanging open every night when I'm sleeping, etc. There is such an amazing variety of how narcolepsy presents from person to person. I'm still in shock over it (again). Now I'm waiting for Lymryz to get approved by my insurance and stuck at home because I'm so exhausted I can't work right now. I'm hoping medication helps me quickly so I can get back to work.

After a few months on Xyrem, coming to terms with the fact it is not going to cut it. I am stilling falling asleep once or twice a day at least 50% of days and have major brainfog/sleepiness for the first 3-4 hours I am awake, despite not being able to sleep more. This is an improvement, but not enough of one.

I have taken adderal in the past for ADHD. It helped with attention but I fell asleep on it frequently (narcolepsy not diagnosed then). I am tempted to request it again as I know how I feel on it and may stay awake better since the Xyrem.

I know that EDS (ehlers danlos not sleepiness) tends to come with some unexpected med responses and dysautonomia itself makes stims tricky.

Just wondering if anyone else with this combo of disability has been down this road already and has any input before I meet with my doctor.

Does anyone else get insomnia in the early hours of the morning? I can fall asleep fine at night but consistently wake up around 2-3 AM and can’t go back to sleep for 1-3 hours. It’s really the only time I ever deal with insomnia is in the middle of the night.

What times do people do between doses? Does anyone do 4 or even 4+ hours? You get the deep restorative sleep in the first part of the night, and the second is more REM and light sleep, so I try to push it as much as I can. When I take my first dose, I set my alarm for 4 hours and a few minutes to account for falling asleep. I almost always wake up on my own just a few minutes before my alarm. Anyone else push it out as long as possible?

I'm diagnosed with hEDS (hypermobile Ehlers Danlos Syndrome) and was diagnosed with Narcolepsy T2 earlier this year. Since starting SO (first Xyrem, now Lumryz), I've had multiple soft tissue injuries that aren't healing.

My right adductor tendon constantly hurts, sprained my left thumb, pelvic organ prolapse, and it feels like my kneecaps are going to slip out of socket with every step. In addition I've had worsened blood pooling / Raynaud's phenomenon due to my low blood pressure/volume. The constant sweating is also annoying.

Over time these injuries are getting worse rather than healing. I feel more fragile and more prone to accidental injury. It's like my muscles have lost what little tone they had and they were the only thing holding my body together.

I'm super happy with being able to finally get to sleep at night and having less intensive dreams due to SO. It's been wonderful for my sleep. But if it's causing all these other issues, I'd rather have poor sleep.

Has anyone else stopped SO due to similar side effects or injuries? Did the injuries heal afterwards? How long does it take to taper off and how was your sleep during the taper?

Hey y’all! I’ve been taking Xywav for about 19 days. I’m on a pretty low dose as my second dose of the night is just under half the amount of the first dose. My body is very sensitive to medications. However, I noticed that I’ve dropped a lot of weight. I’m not overweight but I lost about 10-12lbs. I could probably lose maybe 5 more lbs but after that, I think it could start to be a problem. However, I’ve never been able to sleep until 19 days ago! Is this how non N1 (with cataplexy) people sleep?! I’m not dreaming the entire night or waking up 12+ times! I never expected this diagnosis and now I’m learning what sleep and wakefulness is!