Hi, I have N1 (currently taking Sunosi) and my doctor keeps recommending xyrem/xywav but I’m really scared to try it, because I have the hardest time waking up in the morning. I set like 20 alarms and use a shock watch and can sometimes still sleep through getting shocked repeatedly. I told my concerns to my doctor and he said that xyrem might actually make waking up easier. I was just wondering if anyone could confirm or deny? Also, he said that it is very very controlled and you have to go through a central pharmacy to get it. What is that process like? And about how much does it cost a month?

Any info is appreciated!

So I know that a good percentage of overall population can get a little sleepy/lethargic after eating lunch, but it is so incredibly difficult to stay awake for the rest of the day after I eat lunch. I'm perfectly fine after I eat breakfast and dinner, but for some reason lunch just destroys me no matter what/how much I eat, and I'm miserable for the rest of my workday and just wanting to pass out at my desk from drowsiness.

Has anyone found any solution to this? I'd love to be able to take an immediate release stimulant to counteract it, but my body is super sensitive to all stimulants and can't handle the IR one without getting horrendous heart palpitations. I can only handle a measly 10mg of Vyvanse per day.

Has anyone else experienced this? What did you do to help!? Ugh!

I hope this is allowed! I am a Narcoleptic who has been knitting and crocheting a ton to mentally deal with my Narcolepsy, and I wanted to share!

If you are a Narcoleptic (or have IH), I would love to send you a little something this holiday season to let you know I am thinking about you and you aren’t alone. 😊 Please DM me if you are interested. Wishing the best for everyone here and happy holidays!

So I’ve been having issues with staying awake (especially while driving) for over a year now and it’s been getting worse. I have an at home sleep test scheduled for this month. They gave me some papers about narcolepsy with suggestions on it and I’m wondering what peoples opinion is on these two specific ones.

1. wake up at the same time every day no matter how tired you are

My question is, does this have to be like an EVERY SINGLE DAY type thing or what if I’m on vacation? Am I “allowed” to sleep in sometimes?

2. try to avoid naps, when necessary, make them short

Are my days of 2 hour naps over?

Thanks for the help! Regardless of if I’m diagnosed with Narcolepsy this subreddit is very comforting to know I’m not alone.

I'm new to narcolepsy and cataplexy. I'm a GF (45), (48) to a person with cataplexy. I don't understand exactly what happens during n event. And he's very embarrassed by his conditions. So, I try not to bring attention to them. When I've attempted to spoon with him he twitches and jumps. He won't sit close on the couch as he jerks and twitches. Is this cataplexy? If we remain close together will the twitching lilely stop?
This doesn't happen when we're intimate.

I have both narcolepsy and ADHD, I’m prescribed 20mg of Ritalin three times a day but I usually take 15mg 4 times a day instead because I metabolize quickly. I’ve tried adderall and it worsened my symptoms. I try not to take my first dose until around 11am (I’m a stay at home mom), so that I don’t run through my doses too quickly. But I often find myself taking an extra 15mg dose in the evening to get me through til bedtime. That brings me to 75mg total. It’s more about the ADHD symptoms, as the narcolepsy is well managed at 60mg a day, but the ADHD is not. I’ve asked my doctor to switch me to extended release so that I don’t have to do this, but he said IR works better. This means that a few days a week I have to take less meds so they don’t run out, so I just try not to have anything scheduled these days. Am I abusing my medication? Or developing an addiction? I’m just worried that I’m taking too much some days, but I have a really hard time functioning or even socializing with my family once it wears off.

Right now I have back to back finals, about to get my period, and am taking care of two dogs and three cats by myself. Everything hurts and I just want a little positivity in my brain right now. Tell me something good that happened to you recently! Job promotion? Did you not pee your pants today? It literally can be anything

I was just curious wether or not there were actually people who have service dogs for narcolepsy and find them helpful? If so, how did you manage to get one, was it covered by insurance, and how did you know that would be something that would truly help you?

I am starting uni soon and im just a bit worried about being out and commuting all day by myself, so this was just something i was curious about.

I’ve struggled with narcolepsy since high school, and my life is finally stable enough that I’m trying to go to college next fall, and get a job and I’m desperately trying to cling on to my Xywav. (I’ve tried everything else except Wakix, they’ve all caused various life-ruining side effects) It feels like the world is doing everything it can to stop me bc ofc I get well enough to move forward with my life as soon as I lose insurance (I’m turning 26). So I applied for Medicaid and got approved today and my card is on the way. I thought that was the thing to do, like the typical “next step” poor ppl take, y’know?

Idk why I thought this would be easy or helpful instead of just another life-ruiner in the series of life-ruining events that is…my life lol. I just disqualified myself from the patient assistance program. I thought I’d be able to look up what medications Medicaid covers since I’m part of it now but I can’t figure out how to do that AT ALL. (Anyone also from Pennsylvania have any idea how to do that??)

Here’s my timeline and I guess question amongst the rant: I’m covered by Medicaid as of yesterday. On January 1, I’ll be kicked off my parent’s health insurance. If I cancel Medicaid now I’ll be covered through the end of the month and then it will go away (I think). Would I then be eligible for the bridge program/patient assistance in January? Or am I doomed because I can get Medicaid and they can find that out or something?

Sorry for any dumb grammar mistakes and I’d really appreciate some kindness or patience I’ve been extremely stressed about this for months now and somehow I’ve been making every single wrong decision possible and I am so close to just giving up. Thanks for your help or just taking the time to read through this.

TL;DR 1) how tf do I find out if a state’s Medicaid covers Xywav (Pennsylvania) 2) If I cancel my brand new Medicaid before I lose my parent’s insurance on 1/1/25, will I still be eligible for the bridge program Jazz has?

so, without getting too specific for risk of starting arguments, the current president elect for my completely unspecified country is trying to dismantle the department of education. as someone with narcolepsy, this is really worrying for me. narcolepsy is already a really overlooked disorder and my 504 has been a lifesaver but it's only thanks to the department of education that i have it. i'm going to college soon, and i don't know how to handle this without my 504 plan supporting me. nobody understands when i bring up this concern, they just tell me ill have to try harder. it's driving me crazy. i wish someone would understand that i cant try harder to stay awake, im already trying my hardest. they act like im getting perks that they aren't getting, when im really just getting the support so that i can have the same opportunities as them. ugh i don't even know where im going with this. i just want to be able to live a normal life but somehow everybody seems to be against that.

I have narcolepsy and ADHD/ADD. I take MODAFINIL 200mg but I see little to no improvement. I still always feel tired, sluggish, eyes are extremely heavy. I was on Adderal before I was diagnosed with Narcolepsy, since the age of 10 actually. I stop taking it because I started reacting to it and we wanted to see what else could be wrong with me and try out new medicine. That’s how I’m here now.. I’m also a college student and all of this plays a major roll on the brain fog I get consistently while trying to study and do my work. Sometimes I feel like my mind is just not working.

Any help please.’!??!

u know, as u do 🥲

update: slept off and on for an additional 8 hours :)))))))))

I’ve only ever taken adderall IR so I’m not too familiar with how the other stimulants work.

I’m on 30 mg Adderall IR 2x daily. Wasn’t lasting long enough (mainly the first dose), so I was prescribed a 5-day supply of 40 mg Vyvanse (to be taken once a day) to “try”. So far I’ve only taken it once because it literally felt like I hadn’t taken anything at all - I know it’s not an IR med and feels smoother (from what I’ve read), but for me it might as well have been a sugar pill.

I was going to give up on it because I figured I’d be able to notice a difference on day 1, especially since that’s how it was when I first started taking Adderall, but now I’m wondering if this is a med that I’d need to take several days in a row before experiencing any kind of change?

Also basically have the same question for Dexedrine (15 mg once a day), as I was prescribed that earlier in the year to try, but I didn’t feel anything when I took that either.

Thanks in advance!

Is it common to feel tired after taking your medicine in the morning? I took my Modafinil around 10:45 and I feel so sluggish and exhausted right now. It’s currently 12:03pm where I’m at

Absolutely terrifying. Was a block away from my house yesterday evening with my kid in the car and suddenly I didn't know where I was, where I was going, or even why I was driving. It lasted for several seconds. I live on an arterial road so I was doing about 40mph at the time. It came out of nowhere. I had rested most of the day and wasn't feeling particularly fatigued.

This is coming right on the heels of an episode where I fell asleep briefly mid-sentence while speaking with a doctor. That has also never happened before.

Obviously effective immediately I cannot drive anywhere. I called my neurologist begging for them to bump up my upcoming appointment and explaining what is going on. Haven't heard back yet.

So yeah, that's a fun new development. I was diagnosed in about 2018 and always wondered when taking the Epworth Scale what it would be like to answer "likely" to most of the questions. Now I know 🤪

Has anyone else experienced sudden severity in symptoms while on medication? I currently take the maximum dose of Wakix and also Vyvanse and right now I feel like neither of them are doing anything. That wasn't the case back in April or so.

For the last week, I've been on Xywav 2x2.25g every night. The medication works; however, it gives me nausea throughout the day. For anyone else who has taken Xywav, did the nausea eventually disappear? I ask this because I want to know whether or not I need to switch my dose to the once-a-night dosing. Any help would be much appreciated.

Last night I made a post discussing the possibilities around doing online school. I was quite annoyed at the school system so here’s a follow up with a clearer conscience:

“Is there a narcolepsy plan in Ireland?”

yes, according to the oireachtas (pronounced i-rock-tus, the Irish equivalent to the US congress) there’s the following things in place for us:

The DARE programme (disability access route to education) is a scheme that allows easier routes for people with disabilities to get into college. In Ireland, your final exams before you go to college are worth points. The highest points you can get is 625, and if you want to become a doctor there’s an additional test you can take to get upwards of 700 points, different courses in different colleges are all different points. The more demand a course has, the more points it is. Colleges usually have around 5/10 slots for DARE students in each course and that allows them to get in through lower points if you’re in the DARE programme. It’s brilliant but right now im in high school/secondary school and this is not of help to me, but im greatful for it in the future.

Schools should have increased awareness and training, but this isn’t the case in my school. Every time I have a substitute teacher or if a guest speaker comes in I have to let them know I’ll fall asleep. By simply saying ‘I have narcolepsy’ I usually get told ‘I’m trained in first aid don’t worry!’ Which is very sweet but I have to explain to them that it’s chronic fatigue. It’s quite embarrassing having to do it every time infront of my classmates, but my school is small so everyone in my year knows. Not sure what can be done about this, there’s been emails sent to my current teachers but the staff on a broader level don’t know.

Learning support: if your disability is affecting your learning ability you are entitled to extra teaching assistance. I don’t require this because my teachers upload notes to Microsoft teams but I lose 1.5 hours of my education in a 6 hour school day every day. I go to school 30 hours a week and miss 7.5 hours of education. I’ve asked to be put in a learning support class to catch up on work because that’s the issue, and to be able to take down notes independently. My principal said she will see if the learning support teacher can fit me in a class, but I’ve gotten nothing and it’s been a week and a half. I don’t think anything will come out of it. I’ve asked to do homework during non exam subjects; religion, sphe and pe because they don’t get examined and won’t go towards my college points so theoretically it’s a good chance for me to catch up so I don’t fall behind, but my principal won’t allow this because of policy.

Exam accommodations: im entitled to a 20 minute break during my leaving cert/sats per exam once im diagnosed (I am so this isn’t an issue) but again this doesn’t help me until im sitting the state exams. I need to implement this in my daily school life when im doing end of chapter exams, and it depends on the teacher. It’s very difficult because I feel like a burden on them. It’s not fair that they have to wait for me to do a test a few days later before handing out everyone’s grades, and makes me feel terrible because im causing the delay. I had an instance where I had a French speaking exam and we had to talk about our family, our hobbies, our school and our relationship with our family. I could only talk about 3/4 things and when I explained to her I couldn’t learn the relationships section because I had a sleep attack over the weekend she was very disappointed in me because ‘it was important and it needed to be learned’ despite knowing about my condition.

I’m meeting my narcolepsy doctor soon for a follow up, half the issue is my meds are too low. 10mg of Ritalin isn’t cutting it for me, but I only officially got diagnosed in June and this was my first prescription so I understand. Is there any way I could say this to her and anything she could do to get the school to help me?

I’m lucky my diagnosis only took 3 years, and many of you didn’t get diagnosed until later so I don’t know how many of you relate to being in high school with narcolepsy but if there’s anything you get help with in the workplace, in college etc let me know! I’m 16 and finding this so challenging at the moment. Nobody can relate to me or understand me and my condition, unlike students with adhd who get accommodated very well in my school. I need the teachers to have a clearer understanding of things, just not sure how to go about it. I really have to fight these battles on my own and appreciate all the support. You’re all great on here, and make me feel much less alone.

Seems there are several people whose insurance is going to deny xywav in Jan 2025. Just wondering who all is in the same boat and what reason they gave for the denial. Have you been taking it awhile? I have been on for a year and a half and my prescription plan provider through my insurance changed so the new one (which oddly is express scripts now) is denying it. Just wondering what the reasons are and is this a new thing or happens to people every year?

Hola, Quiero ser mamá y mi neuróloga me ha recomendado dejar 3 meses antes de la búsqueda del embarazo TODOS los medicamentos.

Antes tenía bulimia. Me curé cuando me diagnosticaron narcolepsia y empecé con los tratamientos (metilfenidato y oxibato de sodio) y la ansiedad desapareció. Me preocupa volver a tener bulimia.

También me preocupa tener problemas para conciliar el sueño por la noche al dejar el Oxibato de sodio (Xyrem). He bajado la dosis y ya tento problemas.

Si tardo un año en quedarme embarazada, no sé si voy a ser capaz de aguantar ¿Alguna ha pasado por lo mismo?

Muchas gracias.

Do you have regular warnings that you need to go lay down? I used to have some twitching in my face that would tell me I'm going to fall asleep soon or I start having trouble with focusing my vision so I start closing one eye to focus. My thoughts would start to drift into confusion and I knew my body was trying to dream while I'm still upright But I'm not getting those warnings as much anymore. I'm not medicated right now, can't afford meds. Recently I fell asleep in a middle social gathering in a chair in some strangers living room, then again in the theater seats, and the worst while driving to and from work and i try to slap myself in the face.. I tried to take a bath and was too scared i would drown.There are times where I start feeling so tired I'm almost ill and and the room starts tilting like a hangover but as soon as I lay my head down, it's 4 hours later. I'm really needing help with any warning signs but I'm missing them . I don't get the face twitching anymore. How do you know when it's time. I'm so used to fighting it that I'm missing my window then i fall out at the wrong time.

I need a solution for those days that i just keep nodding out at the computer. I swear....sometimes I wonder what gets more use as a place to rest my head/face...my pillow or my keyboard. Im stating it jestfully but now, I actually would like to see that breakdown in form of a time graph.

So, Im wondering if anyone has any good solutions....especially something like an app for phone (when driving) or for computer (when coding). Ive tried to build one about a year ago to no avail but now with all the AI hyped products that can automate a full stack code base....shoot....Im going to try again right now. Though, my advice request still stands. Thanks for reading and have a friggin beautiful day!

I don't mean you're totally normal, etc. but please tell me about the improvements you've seen in your tiredness/fatigue since starting treatment. I feel like I see a lot of posts where people say they're not "back to normal" and I'm okay with that, I just want to know that even a little improvement is possible (and, dare I say, likely?). I don't have sleep attacks or cataplexy, so I'm looking for specifically improvement with overall energy levels throughout the day.

It looks like my secondary insurance is going to require another sleep study to cover Xywav since my primary isn’t going to cover it anymore starting in 2025. Am I going to have to go off Xywav for two weeks?? Or is not taking it for one night enough for N2 symptoms to come back?

I have Medicaid and I'm really thankful for it but I'm also stuck because of it. I can't do anything that would possibly put me out of the eligibility window for it.

If I lost my Medicaid I wouldn't have the money for my meds, I couldn't keep up with my 6 month appointments, and if my symptoms get worse I definitely couldn't get another sleep study to try and get Xywav. I couldn't keep my CPAP machine that bills my insurance every month either. And if I don't have my CPAP or my medicine then I'll start falling asleep constantly again, especially when I drive, but I have to take my daughters to appointments and school so I have to drive. 🫠

It's not a great feeling to know my health and sense of security could easily plumit. My sister talked about how she's been trying to get her son out on a type of permanent Medicaid but it's because he's autistic and she's not sure if it's also available for adults.

Does anyone know of anything or could anyone at least give me some ideas of what I could ask my case worker about?

Hey so I was diagnosed with narcolepsy and OSA a few years back. My MSLT score was 6 min and I fell asleep in all four naps I had. In the past few months, I have had crazy vivid dreams. My quality of sleep has declined rapidly (it wasn’t good to start but gotten worse). The other night I took a 10 minute nap and had a dream during it. I’m considering asking my doctor for a sleep medicine as well. What do y’all take to stay asleep and does it work good with dreaming? I dream all night and it’s getting worse. Also, I tried Xyrem already and it made me super drowsy all day afterwards. I currently only take adderall 20 mg twice a day.

This has seriously been on my mind a while now, my narcolepsy is so bad at the age of 16. I can’t complete homework, studying for tests has become impossible. I go to school 6 hours a day and lose 1.5 hours of education on sleeping every single day. I asked the school to help me take non exam subjects off (religion, sphe, pe) but they won’t let me because I go to a religious school and it’s part of policy, and if I ask to have religion off to do homework so I can get studying done at home then ‘everyone with a disability will want to do the same’ according to school staff which is so bloody stupid first of all because my needs are so different to someone with adhd, and if a person with adhd wants to take those classes off to focus on work I think they’re equally as entitled to, it’s so unfair that because someone might ‘potentially’ take advantage of taking religion or sphe off I now can’t do it.

I don’t know what to do. I’ve dropped all my extracurriculars, only play guitar on my winter and summer holidays when im off school for 2+ weeks and barely see friends anymore. The school aren’t doing anything to accommodate me, and im really considering online school. The staff helping me said to just communicate to my teachers, but I feel like such a burden asking them to extend a due date or take a test at a different time. I developed this condition severely in the past 3 years but prior to that I loved school, I hate it now. I hate everything about the education system in Ireland. Not enough is being done, and students with disabilities are being left behind.

Has anyone done online school? What do they think?

Hi this might be an issue very specific to me (I have BlueCross BlueShield - Federal Employee Program as my health insurance) but I’m honestly in shock and thought I would share for any other federal employees with bcbs and/or ppl in open season for health insurance and/or ppl living in America

My insurance decided that starting in 2025, Xywav is no longer a limited distribution med (even tho ESSDS is the only pharmacy you can get it from), thus, no longer allowing the med to qualify for specialty med pricing (aka a flat fee). Instead, it’s a “non-preferred brand name” that’s filled at a retail pharmacy. The difference? Instead of paying a flat fee for the medication (that Xywav’s copay assistance basically completely covered), now I am expected to pay 30% of the total cost, which equates to $6,000/month (which maxes out Xywav’s copay assistance in ~2.5 months).

YES, YOU READ THAT RIGHT - SIX THOUSAND DOLLARS A MONTH WITH INSURANCE.

I called BCBS hoping that I was missing something somehow and multiple reps confirmed the change. I’m going to try to follow up tomorrow during lunch to see if this was somehow a mistake?? But it’s very likely not.

As BCBS never reached out to inform me that my medication’s January copay increase, which would have basically bankrupt me, I figured I’d post here as a PSA to check if/how your 2025 benefits change!!

I just started adderall at 20 mg once a day for a trial period. I feel more awake but still feel like the mg is not enough. It wears off after about 4 hours.

How much mg are you taking and are you taking it with anything else?

I was recently diagnosed with narcolepsy with cataplexy and have come to an absolute standstill in regard to my career track. I am 23 and recently graduated with an applied science associates in law enforcement. I was supposed to go to the police academy but just don’t think I’m ready mentally or physically.

Wondering if anyone on here has successfully navigated shift-work? I just can’t figure out if/how I will ever be able to get back on track and enter a career where I am expected to be able to work 1st, 2nd, and 3rd shifts with no regular schedule. At least at first.

Currently I take Nuvigil during the day, I am prescribed XYWAV and am starting it tonight. Advice regarding xywav is welcome bc I am nervoussss!!