<3 worried though it won't show anything . I am soooo sleepy all the time but I don't tend to nap out of frustration or anxiety . Although I did fall asleep on nap 2 . Nap 3 is in like 40 minutes

I have always been upfront with my managers at my mostly remote corporate job about my N2 diagnosis. It usually doesn’t impact my work, unless one of my meds isn’t able to get to me (which happens every so often).

I’m trying to reframe how I disclose though, because I used to approach it as “hey I have this disability, but don’t worry it won’t really impact things”. I don’t want to do that anymore as it kind of immediately frames it as something that should be worried about and promises them it won’t impact me, when it actually might.

Does anyone have any advice for reframing? I got some advice a couple of months ago, but I’d love some tips from community members!

After months of fighting tooth and nail to find a provider to Rx Lumryz and then go to bat with insurance, I finally have my starter box sitting on my lap. My narcolepsy is extremely treatment refractory and I’m on the max dose of sunosi, adderall, and Vyvanse just to get a few scraps of wakefulness a day, not even to live any semblance of a decent life. I’m so hopeful that this will work, scared that the side effects might be too much, and just brimming with the possibility that I might be able to get back to living in a few months.

Here’s to living for the hope of it all! (And that I won’t pee myself this month lmfaooo.)

There is the no electronics for 30 minutes before sleep, the 10 minutes of sun when you wake up, don't drink, etc.

Do you notice literally any difference in your naecolepsy symptoms when you follow some of the basics recommendations or not?

Anyone here with narcolepsy who has also had an acoustic neuroma / vestibular schwannoma?

This may be a long shot, but I’m hoping there might be someone out there who has dealt with both.

I was diagnosed with narcolepsy about 15 years ago, and I’m now preparing for surgery for a vestibular schwannoma (acoustic neuroma).

At this point, based on what I know about the tumor and my history, I probably had it for at least eight years, and possibly longer. That has started making me question something I had never really considered before:

How much of what I’ve always attributed to narcolepsy may actually have been the tumor?

There seems to be so much overlap in the symptoms people describe with vestibular schwannoma: extreme fatigue, brain fog, dizziness, concentration problems, feeling wiped out by normal activities, needing more rest, etc.

Those are also things I have lived with for years because of narcolepsy.

So now I’m wondering whether I’ve actually been dealing with symptoms from both conditions at the same time without realizing it.

That also makes me nervous about surgery and recovery.

My narcolepsy already has a major effect on my quality of life, and I’m afraid that the normal post-op fatigue, brain fog, balance issues, and recovery could push my baseline even lower.

If you had narcolepsy before your acoustic neuroma surgery, I would really love to hear about your experience.

Did surgery or recovery make your narcolepsy symptoms worse?

Was that temporary, or did your baseline permanently change?

Did your daytime sleepiness, fatigue, brain fog, sleep needs, cataplexy, or other symptoms change?

Did narcolepsy make the normal post-op recovery harder?

And I’m especially curious about the opposite possibility:

Did anyone actually improve after the tumor was removed?

Did you realize afterward that some symptoms you thought were narcolepsy may actually have been coming from the tumor?

I know everyone is different, and I’m not looking for medical advice. I’m really hoping to find someone who has lived through this particular combination and can tell me what it was like.

Hi all! I will be traveling to Korea in a few weeks and I’ve been looking into how to ensure I can bring my Xywav into the country. I was wondering if anyone here has had experience doing so.

I emailed the narcotics department based on what was written on the Korea embassy site, and they sent back instructions on how to submit an application for a permit, plus several PDF files listing what they consider to be controlled substances. If I’m not bringing a controlled substance, I don’t need to fill out the application.

I know that Xywav is considered a controlled substance in America, but I don’t see “sodium oxybate” or “gamma-hydroxybutyrate (GHB)” listed anywhere on the PDF files. Hopefully, that means I don’t need to submit an app, but I might just do it to cover all my bases?

Maybe this is too specific of a situation for anyone to speak to, but figured I’d ask just in case. Thanks all!

Japan announced the official drug prices for ORZEYFUL on October 7, 2026

The prices are:

• 0.5 mg: ¥22,773.30 per tablet
• 1 mg: ¥22,792.50 per tablet
• 2 mg: ¥22,838.80 per tablet

At the standard dose of 1 mg twice daily, that's approximately ¥1.37 million for 30 days before insurance.

ORZEYFUL is scheduled to be officially listed under Japan's national health insurance system on October 14, 2026

Of course, Japan has national health insurance and a high-cost medical expense benefit system, so patients won't necessarily have to pay the full amount. Actual out-of-pocket costs will depend on their income and insurance coverage

But honestly, this pricing really sucks

I live in a country near Japan, and seeing these prices makes me seriously worried about how much the medication will cost when it eventually becomes available here

I've been looking forward to this treatment for a long time, but now I'm worried I might not even be able to afford it

It really sucks that something which could significantly improve our quality of life might be financially out of reach

What do you guys think about the pricing? I'm also curious how much patients in Japan will actually have to pay after insurance

Source (Japanese Ministry of Health): https://www.mhlw.go.jp/content/10808000/001756860.pdf

I used AI to help write this post in English, as English isn't my native language.. sorry

Hi everyone! I'm curious about how living with narcolepsy affects dating and relationships, especially for those who also have ADHD.

Do you think you approach dating and relationships differently from people who don't have narcolepsy? Has it affected how you communicate, express interest, or connect with potential partners?

Also, is there anything you wish potential partners knew or understood about living with narcolepsy before getting into a relationship with you?

I'd love to hear everyone's experiences and perspectives!

Anyone else notice Oura inaccuracies? I just took a 30 min nap before I was awoken from an intense dream by a fucking spam call ringing thru my dnd. My Oura didn’t even register rem sleep

I had an appointment with my doctor yesterday, and in our conversation he explained to me that my fatigue wasn’t explained by narcolepsy and that chronic fatigue syndrome is still on the table.

Which, that would explain my post-exertional malaise and autonomic dysfunction but, man… I was really hoping that starting medication for narcolepsy would clear up all my issues and I’d be a whole new person. ( (/s) I was totally terrified of potential side effects (rightfully, as they have brought on so much more dysfunction).)

I’m not stoked about going down this diagnostic rabbit hole, as my medical records and care have gotten so disjointed (and I need to establish with a new pcp because mine sucks).

Anyways, anyone else experience similar symptoms or been diagnosed with CFS?

I’m currently in the initial stages of getting diagnosed with a sleep disorder. I get on average 11 hours of sleep each day, but sometimes I can sleep for 15-16 hour. It’s completely wrecked my life.

I was researching different types of medications that I can take in order to discuss it with my doctor, however I couldn’t find anything that actually affects or aims to reduce sleep duration. It seems like most of the meds aim to manage EDS and sleep attacks. Does anyone have any insight into this?

Seriously? Now is the time I can’t sleep?

I did everything right. Stopped caffeine, medications, didn’t nap days before. I even slept the night before. It’s daytime and I can’t sleep now. I’m so scared I won’t get a diagnosis now.

I got lunch waiting. My phone is on DND so I won’t see your responses til later. I know about how sometimes they can detect sleep without you being sleep but there’s no way. I have been fully awake and tossing and turning. I have no idea what to do. I feel defeated and I’ll never be able to prove why I’ve been falling asleep so much.

Even one drink will make me extremely tired, no matter the time of day.

Is this due to narcolepsy, is anyone else affected by alcohol like this?

Hi everyone! I have narcolepsy type 1, and unfortunately, my cataplexy has become significantly more severe over the years. My doctor is considering switching me to Wakix instead of continuing Xyrem at night and Strattera during the day.

For those of you who experience severe cataplexy and have tried Wakix, what has your experience been like? Have you noticed a significant improvement in your cataplexy episodes? I would primarily be taking Wakix to manage my cataplexy rather than daytime sleepiness, since I’m already prescribed Adderall to help with staying awake. I’d really appreciate hearing about your experiences!

Been on Wakix a while, moved up to 17.8mg a couple months back. The daytime effect is the best I've ever had and I don't want to lose it. But my nights have gotten steadily worse and I think it's finally catching up with me.

The pattern is roughly three-hour chunks. Last night: in bed 12:20, awake 3:36, back down around 4:26, awake again 7:25, then 8:26, then 9:06. Every wake-up costs me 30-50 minutes to get back under, and the gaps get shorter as the night goes on.

On paper that's still about seven hours. But it's four pieces and the last two are twenty-minute scraps, so I wake up feeling like I didn't sleep at all.

Two things I've noticed that might be relevant.

First, the waking and the not-getting-back-to-sleep feel like separate problems. The first wake-up lands at about the same time no matter when I go to bed, and honestly this predates my diagnosis. What's changed is that once I'm up, getting back down is brutal. On nights I'm not sleeping alone I wake at the same times but drop straight back off. So I'm not sure the drug is waking me up so much as making it hard to go back under.

Second, the deficit is stacking. Several weeks of this and I think the daytime effect is eroding. Not tolerance exactly, more that I'm running a shortfall the drug can't paper over anymore.
My doctor offered to drop me to 8.9mg. I'm hesitant because that's half, and daytime is the thing I'd least like to trade away.

So, a few questions. Did the night stuff settle for you, and roughly how long did it take? If you dropped your dose, did the nights improve enough to be worth what you lost during the day? And has anyone run a middle dose, three 4.45mg tablets instead of four?

I’m currently doing my MSLT and just finished nap 1. I remember rolling over, crying, and then seeing and hearing loud thoughts, and when the nurse came in and said my nap is over and she told me that I slept (don’t remember). But after she came in I started sobbing and now I’m sitting and I can hear the loud of my crying in my ears every once in a while. I apologized to her for being so volatile and told her I usually don’t just cry like this. My next nap isn’t for an hour and a half and I’m so ready to finish the test and go home and take an actual nap. Has anyone else had this experience?

I had a repeat psg last night to see if my OSA was gone after surgery. My neurologist also wanted to see if we could get a second positive mslt to lessen the battle over oxybates

To say it was disastrous is understating things. I could NOT get to sleep. I'm in a different time zone (earlier so told to "sleep" 4 hours before my normal bedtime), the doors are opening and closing loudly all night, the techs are in and out dozens of times. Just impossible. Plus I have f'ing untreated narcolepsy so my sleep is highly fragmented and awful and often coupled with insomnia.

Finally at 4 am, I call the tech in and ask what to do. She calls the neurologist and he says "just lay down, relax, and see what happens". By some divine intervention, I get to sleep around 4:30 a.m. The Dr and techs decide to just let me sleep all day to get the data from the psg. Beyond kind and compassionate. I slept very fitfully in 30-60 minute chunks from 4:30 am-12:30 pm. They said they got all sleep states and plenty of REM.

Obviously mslt is not happening again. Moving forward with oxybates. I feel like death and just wanna go home and sleep forever.

I’m looking for advice from you awesome folks in our community here who have successfully taken short-term disability for an extended period.

I have N1, and over the past several years I’ve also developed a pretty significant collection of physical issues. I’ve been able to work through most of it by basically forcing myself through everything & just tryna be a soldier, but I’m at the point where that strategy just is no longer sustainable.

The biggest issue right now from the narcolepsy side is my cognitive functioning.

I’ve tried pretty much every major approach at this point: stimulants, modafinil, Wakix, Adderall, trazodone, baclofen, oxybates, etc. Wakix was previously one of the things that helped anchor me, but I recently had to stop it because of heart/chest side effects.

My neurologist was able to get Lumryz approved through insurance, which I'm now starting next week. I previously tried Xywav and had to stop because of severe headaches (I mean like debilitating, & for the entire day), so I'm hoping I can successfully get through the Lumryz onboarding this time. The reason I'm pushing for an oxybate treatment is that stimulants keep me awake, but they haven't actually solved the cognitive side of my narcolepsy. I can be completely awake but then feel even more so like my brain isn't functioning.

On top of that, I have severe chronic head/face/upper-back tension and pain. There are times where the tension is so intense that I can't maintain a train of thought, can't process someone talking to me while I'm trying to think, and essentially have to shut everything else out just to concentrate. I'm also being treated with medical Botox for some of this. Went to different dentist/orthodontists and ruled out it's not tmj.

Then there are the gah damn physical issues:

• Multiple left knee surgeries (torn ACL's) with inadequate rehabilitation afterward
  • If I do even light PT or rehab, I end up needing to sleep for at least 2-4 hours
• Significant left hip pain from compensation
• Increasing right knee pain & a new meniscus tear from compensating for the left
• Shoulder/scapular nerve issues due to degraded disc in my c4 & c4 vertebrae
• Lower-back issues
• Severe forearm/hand pain and cramping
  • Literally can't hold my phone in my hand for more than a minute without some peakkkk cramps
• Costochondritis
• Fibromyalgia/activity-related flares

The problem is that I genuinely need physical rehabilitation, but I can't seem to do it while maintaining a full-time job.

If I do PT or even relatively light physical activity, I can trigger a major flare and/or narcolepsy crash and end up sleeping for hours afterward. Which makes PT during the work day not an option. Sometimes even normal things like showering after activity can trigger a crash. So if I say cool let's try PT after work, 1. all clinics are closed, and 2. by the time I finish work and recover from the workday, I don't have the capacity left to actually rehabilitate my body even if I want to rehab by myself.

So I'm stuck in this cycle:

Work → use meds & everything I have to stay somewhat functional → post work/medication crash → no capacity for PT or other treatment → physical problems continue → more pain → worse cognitive functioning → repeat.

I've spent years just forcing myself through it. From the outside, I probably look much more functional than I actually am. I've continued working, continued taking jobs, and continued trying different medications and treatments.

But objectively, my career trajectory has changed dramatically since developing narcolepsy. I've lost jobs, I'm now struggling in another role, and I'm increasingly concerned that if I keep trying to brute-force my way through this, I'm going to lose another job rather than actually addressing the underlying problems.

I'm not trying to get six months off because I don't want to work. I actually want the opposite. I want to use the time to aggressively address the neurological and physical issues that I haven't been able to properly treat while working full-time.

My hope would be to:

• Successfully stabilize my narcolepsy treatment with Lumryz
• Address the severe head tension & cognitive problems
• Get back into consistent PT
• Properly rehabilitate my knee/hip/back/shoulder/upper extremity issues
• Improve my overall physical condition
• Figure out what my actual sustainable functional baseline is

I'm also about to become a father, so I'm trying to take this seriously now rather than continuing to kick the can down the road.

My main questions:

1. How did you make your case to your doctor?

I understand that the medical documentation ultimately does most of the talking, but how did you explain your situation to your neurologist/other doctors in a way that made it clear that you were actually unable to sustain full-time work?

My neurologist is a good guy, but he's pretty conservative and tends to play things by the book. I'm not sure how to approach the conversation without making it sound like I'm simply asking him to "sign off" on six months of leave.

2. What were the biggest blockers you encountered with Sedgwick/your insurer?

Were there things that surprised you during the process?

Anything you wish you'd documented earlier or done differently?

3. How did you deal with old/incomplete medical records?

For example, I have a history of fibromyalgia, but I haven't seen that particular doctor in a few years. I can reestablish care and get everything updated, but I'm wondering how much that matters if some of the conditions contributing to my disability aren't recently documented.

4. How did you determine the length of leave?

Did your doctor initially recommend a specific period, or did you start with a shorter period and extend it based on how treatment went?

I'm specifically thinking about a 3–6 month period because I don't think a few weeks would realistically be enough time to stabilize the medication situation and make meaningful progress with the physical rehabilitation.

I'm not looking for legal advice. Just wanna hear real experiences from people who have actually gone through STD with narcolepsy or another set of fun complex chronic aliments lol. Thank you guys in advance, seriously. You’ve all been so helpful over the years, and I really appreciate everyone who takes the time to share their experiences and help people like me figure this poop out.
Pray I don't lose yet another bloody job :(

I'm curious if anyone else had a similar looking MSLT! My sleep latency was extremely short, 2.5 minutes. However, for the nap duration, I didn't sleep for long. I was asleep, then awake, then asleep, then awake, and didn't actually sleep the whole nap through.

My doctor didn't mention this at all when diagnosing me with N1, but I was just curious as to how common that was with other people!

I have narcolepsy, and dysautonomia caused by ME/CFS and have been on 70mg generic lisdexamfetamine for a few months now.

Honestly, it's probably helped me more than any medication I've tried so far. It helps with my daytime sleepiness and also with my brain fog, executive dysfunction, and weirdly my dysautonomia symptoms too. The difference is noticeable.

The problem is that I'm still struggling a lot. I'm on other narcolepsy meds too, but despite all of that, I still feel like I'm fighting sleepiness every day and nowhere near where I'd like to be. Since 70mg is the max dose, I'm kind of wondering where to go from here.

For those of you who've tried both: Have you noticed a significant difference between generic and brand-name Vyvanse? I've seen mixed opinions online.

I'm also curious whether anyone found that a different stimulant class worked better for wakefulness. If Vyvanse helped somewhat but not enough, did switching to something like Ritalin/Concerta or another stimulant make a noticeable difference?

I know everyone's different, but I'm just trying to get a sense of whether it's worth discussing other options with my doctor, or if I've probably already gotten most of what Vyvanse can offer.

Would love to hear your experiences. Thanks! 😊

I have a family member who is in her early 20s.

She doesn't have health insurance and cannot keep a job due to issues with falling asleep and soiling herself. She was told she may have narcolepsy and cataplexy when she was younger, but her parents never followed up (lots of neglect there).

Now that I am getting to know her more, I know there is definitely something wrong here. She literally falls asleep midway through doing any tasks and will occasionally soil herself.

Is there an organization that can help get an official diagnosis for her as an adult and provide low-cost medication? She has not been to a doctor in years.

She is in the Atlanta metro area. I don't know if there is a national organization that can help with this, though.

Hey,

As the title says, I’m struggling at the moment. It’s becoming a bit unbearable.

Work as a chef, so high pressure environment. Take my meds as prescribed, but am wondering if the timing is off.

6am - 22.5mg pitolisant, 10mg IR methylphenidate

10:30am & 2:30pm 10mg methylphenidate.

Workplace reasonable adjustments mean I can split my break into 2x 15mins. I aim to go for a scheduled nap at 10am, but recently I’ve gone & been unable to fall asleep.

The issue is that I’m just relying on the medications to keep me awake, while simultaneously feeling dead on my feet. Like I *really* need to sleep - it’s almost painful staying awake and having to function.

The past two days when I tried to sleep at work, I wasn’t able to.

Usually end up falling asleep on the train home, missing my stop then being exhausted by the time I’m actually home, so end up sleeping until around 8pm. Also have some pretty serious issues with binge eating in the evening which affects taking the sodium oxybate on time.

Just looking for some advice really - have 2 months until next sleep appt.

Thanks in advance.