Hopefully others in the field will chime in and concur with this finding and that this will hopefully open the door to new discoveries..
I wanted to share what happened to me because I ended up canceling my entire Japan trip over the Narcotics Import Certificate process. I'm hoping by sharing my story it can help someone avoid being in this situation.
There’s a post in this subreddit by u/Clarity_Elise about traveling to Japan with narcolepsy medication in April 2025 that helped me so much with preparing everything. I can’t comment on it anymore but I wanted to thank them for writing it. I followed the process exactly and unfortunately had a very different experience.
If you didn't know, sodium oxybate meditation like Xywav/Xyrem/Lumryz requires approval from Japan’s Narcotics Control Department. They want you to send in a bunch of documents at least 14 days before your trip. I gathered everything they needed (and trust me, it's a lot) and sent it via email exactly 14 days prior to my trip. I was sure to send it to the correct email address, triple checked I had everything they needed and that I got the format/attachment sizes right and thought, now I wait.
After not hearing anything for ten days, I sent my first follow up email four days before my trip by replying to my original email. Two days pass, still no response. I sent a third urgent email on the last business day before my trip and even got in touch with the Japanese consulate, who recommended I call because I hadn't received a response.
I had to buy international minutes on my phone plan, but called around 11am Japan time on the last business day before I was supposed to leave. On the phone, they claimed they never received my original application and said the first email they had from me was my first follow up message, which was past their 14 day deadline. I was like, can’t you see I sent my first email directly below that? I replied to myself every time I sent them an email so they were very clearly able to see I made their deadline and followed up twice. But they just kept insisting they hadn’t received my first email. My husband thinks he heard them mention the attachments being too large, but I had checked them and they were within the size requirements. I honestly don’t know what happened.
At that point they told me I couldn’t get the permit in time, so I canceled my entire trip. I’m devastated. I thought I’d done what I needed to do and all the while, I guess they didn’t even have my application.
Here's my advice: submit at least three weeks out, maybe even earlier. Their guidance says at least 14 days, but that doesn’t leave much time if something goes wrong. Then, send a separate email the day after you submit without attachments asking them to confirm receipt. If you haven’t gotten confirmation nearing the 14 day deadline, I would call them a few business days before that hits. Not to rush approval, just to make sure they have it. Even if they give you a hard time about calling early, I’d make sure to check in again on deadline day if you still don’t have confirmation. I wish I had.
I’m not saying everyone will have this experience... but please don’t assume no response means they’re working on it. That was my mistake and it cost me the trip.
EDIT: If you have IH and take these drugs you know, while sodium oxybate isn't necessarily a "life saving" medication.. it can definitely be a quality-of-life-saving medication. I didn't know how I was going to be without it, and my husband didn't want any potential grogginess looming over our trip. To me, no amount of energy drinks in the world can make up for an unmediated night.
these poor nurses kept trying to wake me up, but it was NOT happening. i passed out in every position they put me in—idk how often they tried to get me up, but i have zero waking memories from the whole day.
i definitely got up from the chair and snuggled into bed when they told me it was naptime, but that was hardly going from 2hrs awake+alert to asleep. i also slept for an extra few hours after the test was over.
has this happened to anyone else? i already have a clinical dx for n1 that i’m given a horse dose of stimulants for, but the MSLT was intended to give me an official dx sp the doctor can give me an rx for ghb or orexin agonists (eventually). are my results gonna be FUBAR? will they make me attempt another MSLT? (i was begging for a lumbar tap instead—maybe this will be the final straw. haha.)
any advice is appreciated. i’m still waking up so i apologize for the groggy post
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. 😰
Hi all, I'm starting to worry I might be getting dependent on pregabalin and lorazepam and could use some advice.
Some background: I have narcolepsy with cataplexy. I was started on venlafaxine 37.5 mg for the cataplexy and for really bad sleep paralysis and hypnagogic hallucinations. It's helped with those, but I also have restless legs at night. I move constantly, and every night is a nightmare unless I take pregabalin or lorazepam (sometimes both). Honestly I'm scared I can't cope without them.
The other thing: before venlafaxine I was getting about 1.5 hours of REM a night (tracked with my Oura ring). Now I'm lucky to get 30 minutes. I wake up exhausted and need to nap during the day, which I didn't need before.
I really don't want to end up dependent on benzos, but I'm not sure what to do.
For those of you not on sodium oxybate (Xyrem/Xywav/Lumryz), what do you take at night? Has anything worked for you for RLS + broken sleep? And has anyone else noticed venlafaxine or other antidepressants making their restless legs/sleep worse?
Thanks for reading, any experiences appreciated.
I recently learned that what side you are lying on can affect how fast a pill can process in your body.
I know a lot of us take stimulants before we’re fully awake, or we go back to sleep until the meds kick in. I do, and could never figure out why sometimes it felt very quick, and other times it was close to two hours before I’d really feel anything.
It turn out you can speed up absorption depending on what side you’re lying on in bed.
Since learning about this, I’ve gone back to sleep after taking my stimulant and intentionally turned onto my right side. I’m not kidding when I say in 10-15 minutes I can start to feel the effects, and I’ve been waking up earlier ever since I found out. It almost seems miraculous, but it’s science!
TL;DR; if you take a pill then lie on your right side, the meds will process in as early as 10 minutes. Alternately, if you move onto your left side after taking a pill, it can take over 100 minutes to begin working.
For anyone curious, I think being on your back or upright is around 20-30 minutes.
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
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!
hi friends,
i just got a new job at a hospital and am having to fill out essentially a health screener for it. this job is not a patient care job and narcolepsy wise i'm looking forward to it because i'll be on my feet most of the time.
the form asks essentially if you have any medical conditions or receive treatments that might affect your ability to safely perform the job functions with or without accomodation. i don't foresee it as being a problem but i also don't know if it would be a good or bad idea to disclose it.
essentially am i shooting myself in the foot by not disclosing it should something happen, or am i still shooting myself in the foot making it known?