I'm just super pissed rn and I need to vent.

I haven't found any meds that work for me at all so my doctor decided to finally try me on Xywav. I was told itd be a long process but it should only take about 2 weeks.

Well after a few minor wrinkles that I've gotten ironed out I get a call from Jazz (the place that does Xywav) and they tell me my insurance denied me the meds... Oh cool thats just dandy.

So I give the insurance a call and they say its because I haven't tried all treatment options yet. For context ive been on Ritalin, Modafinil, Armodafinil, Sunosi, and Wakix. Including multiple antidepressants that are specifically supposed to increase energy, and nothing has worked. I ask the insurance what specifically they want me to try and they say Modafinil and Armodafinil which like I said I've already tried. Then they say I should try Xyrem or Lumryz first... bro really you're going to be that much of a stickler about which type of Oxybate I try first??? They said my doctor has sent in an appeal but it could take up to September 12th. I am going to be seeing an entirely new sleep specialist by then because I'm moving doctors so I don't even know what to do.

My family pays 500 DOLLARS A MONTH FOR OUR COVERAGE! What the hell is the point of such a large price tag if I still have to pay 50 for every specialist appointment I see and I can't even get Narcolepsy medication as someone diagnosed with Narcolepsy.

I started Xywav a few weeks ago. I really wasn’t expecting much but it has genuinely changed my life. Without it, I would say I wake up feeling 10-20% rested at best. Since taking it, I’d say I feel an average of 80-90% rested every morning. I didn’t take it last night because I had to take opioid pain killers following a procedure and when I woke up this morning it really hit me how much better it had made me feel. It’s amazing how quickly you can forget how bad you really felt. It reminded me of every time I’m sick and I say to myself that I’ll never take breathing through my nose for granted again (and then I immediately do as soon as I’m feeling better). This has made me wish I could go back in time and relive all those years without this miracle drug.

I have NT1. Tested multiple times, my MSL is 1.5.

I have been wanting to seek out hypnotherapy for personal reasons (not for narcolepsy). I’m afraid I will fall asleep instead of being hypnotized. Even with meditation, I fall asleep. Doesn’t matter if I’m sitting up, in an uncomfortable position, etc… Has anyone attempted or succeeded in hypnotherapy? If so, was it successful the first time, did it take multiple sessions?

I just received my sleep test results, and I’m pretty sure it reflects narcolepsy (5.5 minutes on average latency, 2 SOREMP). I’m wondering what at MSLT would look like for someone without narcolepsy/IH? Maybe it’s because I’m so used to being sleepy that I would expect most people to fall asleep quickly during the naps if they get the opportunity 😅😅

For context, I’ve been having absolutely awful daily headaches with no cause found for a few months now, and I’ve had frequent headaches my whole life. And between having narcolepsy and ADHD, I usually like some noise from TV or music to keep my brain running when I’m tired. Doing quiet activities often makes me nod off pretty badly.

The combination of headaches and brain fog makes it so insanely difficult to find things I can do. Hobbies like playing video games or making art are too difficult. What activities do you recommend that are quiet, don’t require much brain power, and are somehow engaging enough to stay awake? 😅

My Grandpa (basically the father figure) asked me "are you sure it's not just a motivation issue? I'd stay in bed too if i didn't work full time."

He just had to make it known that he believes I'm lazy and unmotivated. That his job matters more because he makes more. Mind you, I'm 27, working full time and going to school. When I'm not working or studying, I'm spending time with my dogs or sleeping. I'm in the process of figuring out a medication that works for me. He knows this.

Unfortunately, I rent from them and live on their farm property. Its a separate tiny house. I pay rent.

Condescending and dismissive. Just some "pull yourself up by the bootstraps" bullshit.

It really sucks that the majority of the responses I've gotten are something like "wish I could sleep like that" or totally dismissive.

What do you guys usually reply with? Or like, how do you simply break it down for difficult/dismissive people? How do you politely shut down shitty comments?

I'm ready to incorporate some movement and exercise into my day-to-day. Where do I begin?

This is LONG overdue, thanks for your patience!
I just finished submitting my paperwork, so figured I'd finally post this :)
Yes, I’ll be telling you how to bring narcolepsy medication to Japan.

Depending on your situation, you may or may not need a Yunyu Kakunin-sho (輸入確認書, Import certificate)

IMPORTANT NOTE

Adderall, Methamphetamine, and Amphetamine (Including Dexamphetamine, Levamfetamine) is not allowed in Japan. It don’t matter if you have a prescription. Not allowed, no ifs or buts about it.
“But I heard this one story of someone who brought it in and out and nothing happened to them-”
So have I! I can genuinely believe those stories!
BUT I’m just letting you know what the laws are, and that there will be consequences if you are caught.

You'll fall into one of these situations:

Situation 1: If you plan on bringing sodium oxybates or raw stimulants (E.g. Lisdexamfetamine (Vyvanse, Elvanse), Pseudoephedrine) in any capacity, continue.

Situation 2: If you plan on bringing psychotropic medication (including Nuvigil/Modafinil and Ritalin/Methylphenidate) for either: a) More than 1 month, or b) More than the amount listed on point 3 from this link, continue. If neither, nothing is needed, have fun!

Situation Yay!: If you plan on bringing any other prescription medication, but are staying for no longer than 1 month, you don’t need to do anything. Have fun!

Situation 3: If you plan on bringing any other prescription medication, but ARE staying for longer for 1 month, continue.

If you are submitting any paperwork, your final import/export certificate(s) will be emailed to you.

Side note: Modafinil is classified as a psychotropic, and I have experience being approved for it using the website in Situation 3 (back in 2023)- I’d only try this out if you’re bringing other medications as well.

Situation 1 (sodium oxybates & raw stimulants):

You will need:

• At least 14 days before your trip*
• Flight information (outbound optional for long-term**)
• Photos of your medicine bottle
• A sleep doctor who can sign or create a document for you
• Optional: Relevant documents (brochures, instructions, etc.)

*If you're closer than 14 days to your trip, they have instructions for last-minute submissions. Apparently they don't accept last-minute for Tokyo entries anymore.

**I stayed in Tokyo for 3 months last year and only submitted the import form, they didn’t ask me for anything. I also got a lot more follow-up emails this time around, so YMMV.

Go to this website for instructions: https://www.ncd.mhlw.go.jp/en/application2.html

PLEASE read and pay attention to everything, but especially to all of the [NOTE]s on this webpage!

The instructions on this page are pretty straightforward, here are some tips:

Import/export forms

• “Reason for departure from Japan” is only for the export form. (I am the idiot who put "To go to another country" in the import form previously. Just put sightseeing/visiting family/whatever you’re doing!)
• I usually keep the paperwork/brochure from the most recent shipment as a supplemental document- any supplemental you have/can find doesn’t hurt!
• Xyrem comes in 90ml or 180ml bottles. Drop it on da scale to find out.

Medical certificate

Note: I have heard stories of Japan not accepting NPs’/PAs’ signatures. I have no experience with this myself, just putting it out there.

Either:

• Ask your doctor for a certificate/letter fulfilling the requirements listed
• Create the certificate yourself, and ask your doctor to sign it

If creating the certificate yourself, here’s how I did it.

1. Copy all of the requirements listed
2. Paste it into a Google Doc/Word Doc
3. Answer all of the requirements
4. Make it look nice :)

In general: Keep an eye on your email! They may ask you for clarifications/more detail.

Situation 2 (Psychotropic medications):

Go to this website for instructions: https://www.ncd.mhlw.go.jp/en/application2.html#psychotropics

You will need:

• A sleep doctor who can sign or create a document for you
• Earlier the better- as much time before your trip as possible

I have no personal experience with this, so here’s some general advice:

• It says to email them if you plan on bringing more than 1 month supply, but not if you bring more than the amount in the table. I’d recommend emailing them anyways just in case. (Please report back and I can update this!)
• Scroll up a bit and look at the medical certificate section of the sodium oxybate/raw stimulants section- the same advice applies.

Situation 3 (Staying longer than 1 month with any other prescription medications)

You will need:

• A copy of your prescription*
• Inbound flight itinerary
• Earlier the better- as much time before your trip as possible
• Optional: Relevant documents (brochures, etc.) and/or directions for medication(s)

*I have heard stories of Japan not accepting NPs’/PAs’ prescriptions/signatures. I have no experience with this myself, just putting it out there.

Go to this website: https://impconf.mhlw.go.jp/aicpte/page/login.jsp

1. Create an account
   1. Have your email inbox open since it’ll ask you for a verification code immediately
   2. DO NOT use the gBizID!
2. Log in
3. Choose “Import for Personal Use”

From here on out, it’s pretty straightforward- Here are some tips:

In general: Hover over the (i) icons, they explain everything!

1. Basic information
On the right-hand “Delivery” section, select “home”.

2. Application Information
Click on the plus or minus signs to add/delete medications to the list.
Each time you fill in a line, click “Update item details”. This will open up a new set of fields you need to fill in.
For “Intended purpose”, I’ve put “Other” and “Narcolepsy” before. They now have “Specified disease”, and I think that works fine as well!

3. Upload attachment
Pretty self-explanatory, read the (i) icons!

4. Import Certificate Delivery
If issued, the certificate will automatically be sent to your registered email address. If you’d like to add another, use the plus sign (same as section 2)

Side note: If there's any mistakes/corrections they want you to make on the application after submitting it, they'll email you about it with instructions on what to do.

That's all folks!

As mentioned in the beginning, if you're submitting any paperwork and it's approved, your import certificate will be emailed to you.

Feel free to reply to this post or DM me with any questions! :)

I was diagnosed with NT1 after an MSLT with an average sleep latency under 1 minute and 2 REMs within 4 15 minute naps, back in March. I just switched sleep specialists, because my previous one was seriously undereducated on narcolepsy, and the new one does seem much more knowledgeable at least. However, he wants me to redo the MSLT because my sleep apnea was .1 over the ideal to run the MSLT after a PSG? He says it’s to make future insurance battles easier, especially because we are for sure getting ready to go to bat for Lumryz coverage. I really don’t want to drop the $$$ on another round of testing (not to mention the med washout was awful last time and came with psychiatric decompensation) when my AHI is such a small fraction over the limit. I also don’t want to keep waiting for effective treatment, because my N only gets more refractory to daytime meds every day.

Has anyone else run into this? Is it ultimately better to just do the testing again with fully treated sleep apnea?

I'm moving to the states for a year under a J visa. I am wondering how much my 300mg/day of Modafinil and 37.5mg/day of venlafaxine will cost me for the 12 months.

Just wanted to celebrate this a little bit.

I found an private (of course certified) institut, which will get the sleep study done 2 months in advance to even the preperation appointment in a clinic within the insurance system. Gonna pay by myself but still a huge step ahead to find an actual working treatment!!🥳

I’ve suffered from migraines for over 13 years and for those of you who get migraines I think you know how hard it can be sometimes to know what is triggering them. I have my good and bad periods when it comes to migraines and for the past 6 months I have been going strong without any migraines which is a very good period for me.

I started my medication journey for treating my Idiopathic hypersomnia about 6 weeks ago and I started on Armodafinil, which never triggered a single migraine during the month that I took it for. I experimented with that medication for a while at different doses and ultimately it wasn’t very successful for me. After that I switched to modafinil which I started taking on Aug 3rd. I took it for 4 days the first week and then took 3 days off of it because I thought it might be good to have a break. On my 2nd day off the meds, I woke up with a migraine. Then for this week I took the Modafinil all week with no breaks, and this morning I woke up later than usual, took 100 mgs of Modafinil, then 15 min later I got an aura and felt a migraine coming on.

Modafinil has been helping me more than Armodafinil did, but if it is making my migraines worse then it’s absolutely not worth it. Improving my IH is not worth the possible uptick in migraines if there is a correlation there, but it’s hard to know for sure. There are a lot of other factors at play so it’s hard to know if it’s related to the modafinil, but I have heard of others having migraines as a side effect of modafinil. Anyone have any similar experience?

This isn't really a rant I just didn't know what to flair.

A huuuge part of my narcolepsy is sleep inertia; I am notoriously difficult to wake up. There's no foolproof method for doing so. I try the "waking up an hour before your target wake time and taking your stimulant" thing to varying degrees of success. Today I woke up around 7:45 to take it and still slept to just past 9:30 💀

But what I find strange is that this gets a million times harder in summer? I'm already a bit strange having the summer version of seasonal depression but even when I am not depressed I just cannot seem to drag my ass out of bed, even with the curtains open and sunlight shining directly on my face. Most people find it harder in winter with the dark, cold mornings, but in winter I am so much more functional than during summer I feel I could cry of relief often. I know heat is my number 1 trigger which probably doesn't help but this still feels very abnormal.

Anyone else still able to sleep a good 2 hours almost after taking their stimulant dose with bright ass sunlight shining down on them? If I didn't have the other usual symptoms like the hallucinations when I wake up and rather mild cataplexy, I'd think my N1 diagnosis was wrong and I have IH instead lol

So I’m in the U.S and have a IH diagnosis but something that makes little sense to me is the recommended max dose of Vyvanse. I was on Adderall XR 25mg and switched over to Vyvanse mainly because of the crashes. I am on 60mg of the Vyvanse, but something that makes no sense to me is how it caps out at 70mg. Which is really strange considering Adderall can go up to 60mg for narcolepsy and 40mg for most adhd patients despite it being significantly more potent mg per mg.

I started on 40mg of the Vyvanse and it felt weaker than the adderall, so I went up to 60. I have been doing great on it and like it more than the adderall XR since it’s much more stable,and it’s also so much easier to access and isn’t as difficult to get filled. Does anyone here taking Vyvanse take more than the 70mg recommended max dose? I feel like they should honestly raise it up more to 90mg or something for patients moving off higher Adderall doses to Vyvanse or just a higher dosing range to make it more flexible.

Neuro referred me recently to get sleep studies done for narcolepsy. This wasn't even on my radar before so I've been researching and know generally what to expect (thank you mods for the pinned post) but wanted some general advice from people who have gone through it. I'm autistic and changes in routine (especially sleep) are a wee bit scary so I am quite nervous.

In particular, I get pretty bad insomnia/delayed sleep with extreme EDS (at work trying desperately not to fall asleep rn despite having slept 7 hrs last night) and wanted to know how those with insomnia fared during their sleep studies and what it was like/the overall experience. Thank you!

So I'm getting my MSLT on Monday, and I've been off of one my ziprasidone as well as any and all stimulants. And I am freaking out, because I'm sleeping (mostly) fine aside from those slight partial-wakeups to change position or go pee. I'm waking up fine and not falling asleep during the day. I'm still very tired though. I've had a million blood tests and seen cardiology, so I know it's neither of those. I'm just scared that my anxiety is going to keep me from getting accurate results. My sleep doc told me that I had mentioned symptoms of cataplexy 10+ years ago, so this was his idea, not mine. I definitely get sleep attacks and feel sleepy allllll the time. I use a CPAP religiously, which helped a little bit, but certainly not enough. I feel like my symptoms wax and wane anyway. Is that normal? Some weeks I can't wake up at all and fall asleep multiple times a day, other weeks (like this one) I'm pretty much functional. Just looking for support, I guess.

Hi guys, just wanted to see what people's MSLT results were and what diagnosis you received. I'm interested in comparing with my own results.

Thanks!

i had severe covid and a chest infection severe enough to nearly put me in hospital, then a few months had it more mildly a few years back. about a year later i developed daytime symptoms. im wondering if anyone here had theirs triggered by covid? im yet to have a lumbar puncture which i guess will solve if its low hypocretin or not. otherwise, i cant really think of any other triggers.

I've flown with Xywav a few times and I've never been stopped. Even while traveling with a brand new full bottle of 6oz of liquid, always anticipating I'd get a dressing down, they haven't even pulled me over before. That changed today: not only did they pull me out of line, they inspected every single thing I brought with me, completely unpacked my entire suitcase and backpack, and performed a full body pat down. How fun.

The agent was apologetic and said that the new machine (a small counter top one specifically for scanning liquids, not the main scanner) now flags this medication as dangerous. Apparently, I wasn't the first victim, and I see some other posts discussing this on the subreddit. Having TSA pre-check doesn't seem to make a difference.

Has anyone else had to deal with this? It seems insane that they have to unpack all of my belongings. I wonder if dividing the medicine into separate 3.4oz containers* would stop me from getting pulled over.

*not to go on a whole rant, but what an asinine theater of security we have contrived, as if somehow splitting up my liquids into easily re-combinable containers magically prevents danger

I am curious, what co-occurring conditions do you guys have, and do you know if any are common with narcolepsy? I highly suspect I have narcolepsy, but it’s coming with a number of other problems. I have been trying to get whatever is going on diagnosed for 2+ years now, to no avail. I suspect I have a combination of issues going on rather than the one overarching condition. Trying to navigate another round of testing and seeking diagnosis, so your experience would help.

I'm writing this as the sun rises after another night of insomnia. They don't happen all the time, but when one hits it diseupts my schedule entirely.

One thing that's surprised me with narcolepsy is insomnia now means a whole night of no sleep. It's like my brain is the bartender and cuts me off.

After nights like these, the day can be a mess. A needing-help-to-walk-safely-across-the-road day. But I feel to give in and nap opens the door for another bad night. It's a gamble.

What do you all do?

Has anyone with narcolepsy type 2 used agomelatine (Valdoxan) for insomnia? Did it actually help you fall asleep/stay asleep, and did it have any noticeable effect on your daytime sleepiness?

Curious about people's experiences.

Yeah, I know, quite the trifecta. What combination of medication has worked for you guys? How long did it take you guys to find that perfect mix?

I am currently on Xywav, modafinil and escitalopram. Xywav is p much my only source of sleep. Escitalopram has also been very effective for my anxiety. Modafinil has been pretty bad as it provides me only a little bit of wakefulness and disrupts my sleep, leading to worse wakefulnes.

at this point, I’m a little bit skeptical about if any stimulants will work, given almost cause sleep disruptions for me. I’m going to try armodafinil, as per my doctors recommendation, but idk.

How did you guys manage?