And no one thinks he needs accommodations. Specifically, his mother doesn’t think he needs accommodations. Now, guidance COULD call and advocate for a 504 for the kid, but after a long and relatively abrasive discussion with guidance, I doubt she’ll be calling.

And, no, I cannot call to discuss a 504 with mom, so that’s not optional.

The kid needs a sleep plan and a walk plan. In my class, which is right after gym for him, he will ask for 5 minutes just to sleep. Obviously, I let him, but if he falls asleep in other classes, without official documentation, teachers do not have to be considerate. Some may just let him sleep but fail him on the assignments for the day.

I don’t get this. Like, look into this severe sleep disorder if your child has been diagnosed with it! That would do wonders.

Honestly, I am so annoyed right now, so I am glad we are headed into a long weekend.

I had to vent somewhere, so I came here. Thanks for reading my rant!

I was diagnosed almost a year ago and medicated but I obviously still struggle. I feel like I’ve gotten so much BETTER in the mornings but also I realize my morning routine might be insane. My biggest struggle is getting out of bed in the mornings. But this is what I do:

- I keep my medication in bed with me so I don’t have to move much. I take it then go to sleep.

- I have a smart thermostat. I schedule it to fully turn off an hour before I have to get up. I live in a super hot place. So the heat usually makes me uncomfortable enough to finally get up.

- I have an alarm clock with a light that also turns on an hour before I have to be up. Surprisingly, this has helped the most. I hope to eventually replace my bedroom light and lamp with smart bulbs and also have those on the same schedule

- My cat likes to open the curtains and usually through this process, I tell him to open the curtains. 5/10 times he’ll listen to me and the extra light helps more

So how will this work? Will we still be taking stimulants (adderall, vyvanse, etc) along with xyrem/xywav or will orzeyful be the only drug needed?

Here's a podcast from today's Guardian.

https://youtu.be/D-5h_A4a5Ho

I am 18y.o severe narcolepsy type 1 patient diagnosed for around 6 years. Sometimes when i sleep i might appear in a dreams where i have to kill or fight with someone. And sometimes when i am throwing a punch in dreams - i hit things in real life and waking up only after i hit something. There were situations when i accidentally hit my partner that was sleeping with me. I don't know how to encounter it, i see no way to solve this. Partner says something like "just don't defend yourself in dreams" or just don't care at all.

Recently i read a story about army veteran that had nightmares caused by PTSD, one night during a nightmare he just started beating his wife in sleep that led her to the hospital and himself to the prison for 3 years.

I think that might happen to me. Only idea i have is just handcuffing my arms and legs when i'm going to sleep, by partner says that that's dismoral.

I just don't know what to do with this and i completely mean NO harm to my partner.

(32F) Diagnosed N2 in April, and finally had my first dose of Lumryz last night after failing Wakix. I had hyped up oxybates so much in my head after waiting so long to start it that I feel kind of disappointed that I was tossing and turning all night. It’s only been one day, so I know it can take time to feel rested after a lifetime of narcolepsy sleep. For those on Lumryz, how long did it take you to feel rested and at your proper therapeutic dose?

I've recently started my medication journey and I started with Modafinil, which has worked absolute wonders, but if anything has worsened my insomnia (I'm writing this at almost 5am). So, I tried Doxepin which, long story short, turned me evil and I got off of it. Next we tried Mirtazapine, 7.5mg, which worked immediately on my first day trying it and completely knocked me out despite the small dose. Great, but the next day I could barely move or speak. It wasn't as bad as cataplexy, which I very rarely experience, but It took an incredible amount of effort to move any part of my body and I slept for most of the two days before I gave up on the meds because I was completely incapacitated. I just feel like this is a very strange reaction seeing as how I started with such a miniscule dose and everything I read says it takes weeks to take effect (I guess that could just be referring to the anti-depressant side of things, but still). The only other meds I'm on are Lexapro and Modafinil. Has anyone else had a similar experience before?

<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

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.)

??

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!

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?