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!!

So far, I have not seen any one on here speak about sleepwalking while taking Xyrem. I have been off of Xyrem for a year now and my narcolepsy is absolutely out of control. Does anyone have any experience with sleepwalking with Xyrem? I have a new Sleep specialist and we are talking about potentially trying the extended release oxybutate.

didn't clock in yet i work at hardware store & i fell asleep in breroom rn im smoking to stay awake my doc wont send my second dose of adderall and its day 5 now. please pray im like i can function and work but i think im asleep sometimes here while working .

pray plz here til 9 pm my co workers started a h3roin rumor when i first started having symptoms now waiting for doc to send my script in AHHHHHHHH so weak with cataplexy brought cane if i fall cant call off sick bc ill get fired thry denied fmla

I’ve found that my narcolepsy (and medications) work SOOO much better if I take about 20g THC/ CBD (two “shots” of edibles/ marijuana drinks). Like I wake up in the morning feeling refreshed and it’s 1.) either pee and lay back down til the afternoon or 2.) take my Zenzedi/ Adderall to wake up.

Hey everyone, currently going through a draining period of sudden vivid dreams every night for a week and a half. And most of the time I wake up tired during the day, but I can function fine after a few hours. I also don’t have any hallucinations and some mild hypnagogic hallucinations sometimes when I close my eyes and think about random things. I’m just really worried and scared. I must also mentioned this week and a half I have been extremely stressed of getting my sleep back to normal because it all started with a few broken nights of sleep. Do you think I should go get tested or not? I must mention I can talk, think, remember and drive just fine. Also is there any hope if I do get diagnosed? I also don’t have cataplexy.

I am a PWN. Type 2 (no cataplexy). Started around age 16. Now in my 40s and was diagnosed at age 38. 20mg add 3 times per day. Lumryz 9 mg per night.

My question to all with narcolepsy or IH is do you recall the last time you woke up and felt fully rested? I remember going out really hard one evening while traveling with spouse and friends. Drank quite a bit and went to bed at around 2 a.m. and woke up at 8 a.m. and actually felt wonderful. Everyone else felt miserably hungover. I SHOULD have and 99.999% of the time would have felt the same but something happened in the way i slept that “morning” and I literally felt WONDERFUL. I have repeated this same excessive drinking since countless times and of course feel miserable like anyone normally should.

I think maybe once every other year i have maybe one random day that I wake up feeling NORMAL. So like 1 in 730 days maybe.

I am not a habitual drinker. Just sharing the drinking part because my last normal feeling day just happened to be after a night of heavy drinking—i normally expect to get crippling hangovers if i drink too much. So that just made the situation even more strange.

Does anyone else have a RANDOM and RARE day that they wake up feeling GREAT AND REFRESHED?

I take 7.5g Lumryz, and haven't had any problems until a couple weeks ago when after my last refill it started to affect me way stronger than normal. I've spent the month thinking I was experiencing some interactions with other medications but on a hunch I've just weighed all the 7.5g packs I have left and every single one of them actually weighs 13g. Now I wonder if I somehow received a batch that were overfilled.

I don't know if the 7.5g packs are supposed to contain 7.5g active ingredients plus some filler or 7.5g total, but if anyone has a kitchen scale and could let me know what their packs of any dosage weigh I would appreciate it so I can compare.

Thanks!

For those that use sleep trackers like Fitbit or Apple Health, do you notice any patterns in your sleep data that correlate to how you feel during the next day?

I use Fitbit and it tracks wake, REM, light, and deep. On Friday, I felt absolutely amazing after taking Lumryz on Thursday night. Woke up feeling energized, was super productive and motivated all day, and never even thought about caffeine or adderall. This is highly unusual for me. I normally don’t have that kind of result with lumryz. Data on my Fitbit doesn’t really have any outliers compared with the rest of the week.

What type of sleep actually makes those with narcolepsy feel better?

Hey! So I've been on Xywav for a year or so now, I'm up to 8g a night. And it has helped my head clear, and at first it helped me stay awake more, and I'm still not sleeping to the degree I WAS but I'm back to being so exhausted all the time. And I take a nap during the day that without an alarm would last 6 hour (i set one so this doesn't happen I just have slept through it several times before).

And my dad is like "just don't lay down" but I start feeling physically sick to my stomach when I start getting to the point of a nap and start nodding off, plus my head gets foggy again so I'm basically useless in any task that requires thoughts. (Even shutting the fricking gate so the dogs don't get out.)

We've tried putting me on 5 mg of Adderall, 1 time in the morning and 1 time in the afternoon when I start to crash from it/my normal nap time. It's not extended release. My doctor is hesitant to put me on a higher mg of it, because he really doesn't like adding stimulants when the xywav should be taking care of it?

I don't know I'm just frustrated, I want to like being awake and feeling awake like I did when I first started xywav. Now I'm back to just really tired and it's hard to wake me because I, not enjoy sleeping, but I'm having relief from feeling tired, so I enjoy it more than being awake.

I just hate that we all have to deal with this and I just want to get better. Xywav was and still is life changing for me in some ways (ie my head is clear for most of the day and I can think) but the tiredness is just... I'm struggling. I can't pay attention to my dogs like I should, I can't finish my daily chores because I just run out of time... I'm supposed to be running a business with my mom but I'm sleeping a lot. I feel like I shouldn't have even tried this business thing but now we're stuck.

This may be a stupid question but earlier this week when my dad was getting me up he asked me to do the same thing several times in an attempt to get me up. He kept asking me to open my eyes, and anytime I told him they were open he would just repeat the request again. I started to get frustrated, my eyes are open, I can see you clearly, stop asking me to do something I already have over and over again. Finally I loudly responded that my eyes were Infact open and he backed up and helped me out of bed, but thinking back on the experience later that day I felt really confused. Why did he ask me the same question and to do the same action over and over again when I had already done the action and answered? I asked him later and apparently I hadn’t responded to his question, and my eyes didn’t appear open to him. I thought I was answering him clearly and that I could see him clearly, but it turns out I wasn’t even close to forming words and my eyes didn’t even flutter until I got frustrated. I heard myself speaking clearly but really it was just gibberish. I just wanted to know if this is common or has a name.

Hello! I'm curious: how many of you live alone, and how do you know if/when you have microsleeps?

My partner tells me that I have way more of both than I ever realized. Like we'll be watching TV and I'll jerk awake "Did I just nod off?" and he tells me I nodded off half a dozen times that I was totally unaware of.

The other day I laid down to take a nap while he was here, but didn't know if I'd actually fallen asleep.

It's very unnerving to realize that I've been missing more than I realized. I suspect many of you can relate.

How have you dealt with it? Or have you dealt with it?

Thanks!

(I've already had to rule out stimulants and modafinil due to side effects, but have more hoops to jump through before my insurance will pay for the ghb meds.)

Does anybody else find the stimulants not working. It works for my ADHD tho. One dayI decided to stop taking the stimulants and surprisingly I felt better when I kept a constant healthy routine, such as sleep, exercise, diet, yoga.

I wonder what can help me, I still nod off on the stimulants. I nod off in meetings, driving, class, reading, writing a paper, studying. It's fricken annoying. Im behind class work since I fall asleep so many times reading lol.

Any tips? Tricks?

I've been having unvoluntary momemts of sleep since starting a new pain medication a couple of months ago. We keep raising the dose that I'm taking in order to get to a better level of pain management. So I get used to the side effects but we keep having to change the dose. The the side effects get worse.

When I say I have unvoluntary sleep moments I mean falling asleep while on the toilet (which has been safe because of a lot of factors I don't feel like listing), and falling asleep while typing, etc.. But yesterday I had extreme sleep deprivation due to some IBS issues that kept me awake all night, and for the first time I fell asleep while getting up from the couch to go to bed. Apparently I said I was going to bed 3 times and then started drifting off as I was standing up. My partner noticed and talked to me and I sat back down. I actually remember having been awakened from a dream when it happened (I do not sleep walk).

He leaves Monday for a work trip until Wednesday. I have some ideas for how to be safer whlie he is here and when he leaves, and it starts with doing my best to make sure I'm not sleep deprived.

Do you folk have any suggestions besides contacting my doctors on Monday and getting an appointment as soon as possible, and making sure I get sleep whenever I can so I don't have this much sleep deprivation? I was thinking of looking for a fall detection system. I just hope it doesn't go off in false alarms.

Thanks.

How do I stop my eyes from feeling so sluggish and tired. I feel like I’m draining my eyes all day.

Me (17f) and my friend (16f), who we’ll call S, were having a talk about a guy she was talking to.

{For quick background: me and her bonded in PE because we both didn’t have to do shit because we’re disabled. S knows I have narcolepsy and was extremely surprised I clocked her having EDS (the connective tissue disorder, Ehlers-Danlos syndrome, not excessive daytime sleepiness or eating disorders) within 30 minutes of me talking with her. As well as bonding over our agreement how much we hate how much our disorders are dismissed because it’s not something like epilepsy. We also bonding over how weird it is when our disorders are fetishized with the understanding that it’s objectively creepier to fetishize narcolepsy like my ex because why is having your partner unconscious during sex something that is a huge turn on.}

S was really upset because he had ghosted for a day (he was so attentive e.g. good morning and goodnight text despite them only flirting and not dating) and found an insta story of him bridal carrying his “girl best friend” (who also happens to call him “her man” when talking to my friend while knowing S is into him) with the big caption being “Romeo and Juliet core”

(Mods I swear it has to do with narcolepsy just read the whole thing)

My friend proceeds to show me multiple screenshots of him calling her (S not girl bsf) and him Romeo and Juliet while flirting. Bro used the same line on multiple girls smh.

So as a good friend I cheer her up by immediately talking shit about Romeo and Juliet in a way similar to this:

“Romeo and Juliet is stupid because 1) they were COUSINS. And 2) because HOW TF DO YOU SEE YOUR GIRLFRIEND LAYING IN BED UNCONSCIOUS AND IMMEDIATELY UNALIVE YOURSELF INSTEAD OF MAYBE TRYING TO WAKE HER UP AND OR CHECK IF SHES BREATHING/HAS A PUSLE?! Honestly… was probably the inbreeding that made him so fucking stupid. Anyways if I had a Romeo, he would’ve unalived himself a week into the relationship. And to be fair… seeing someone have a sleep attack for the first time during the 1300s, you’re probably gonna think they’re dying… but my point still stands that it’s stupid he walked into a room, saw that his gf was asleep, assumed she was dead while not trying to do anything, and then unalived himself. Therefore, the guy you’re talking to is a fucking idiot. Do better. Date woman ;)” (she’s bi and I’m pan btw)

Fin

(Yes it did make her feel better and no, I’m very disappointed to say that she immediately ran back to him the next day)

Hi! I'm a little over a month in after titrating to 4.5g Xywav twice nightly. I've made an appt with my provider, but the soonest they're available is January. Seeking advice on a few things.

Eating has become very difficult for me as I don't have an appetite. I'm trying to eat small, frequent meals, but it's hard for me to tell if I'm eating well enough. And apparently some foods can effect my medication? (Planning on speaking with nurse case manager about this too.) For those on xywav, is appetite suppression an ongoing side effect or did it alleviate over time? How do you manage eating?

(TMI but I've also been having pale, loose stool. Does that get better too?)

I don't feel like myself too. It's hard to describe. My therapist has mentioned that I've been less spirited in my last 3 sessions with her. A coworker said I seem kinda down lately. It's like the only thing I can feel is irritated. I find my cat annoying now, which is weird because I usually love it when he sits in my lap. Now it's like I just tolerate it. Has anyone else experienced this? Does it go away?

I was hopeful that Xywav would help me get my life back. It's allowed me to be more independent, but I feel like it's taken away things that make me me.

I have N1 with cataplexy in addition to a connective tissue disease that makes me even more wobbly and causes chronic pain I have been very hesitant to try Any of the oxybates as I’m usually extremely sensitive to side effects of most medications. My sleep doctor mentioned there are some people who find relief from the pain of cataplexy/the physical pain that can come with narcolepsy and powering through even when our brains choose not to believe we’re supposed to be awake.

Is there anyone out there who found their pain decrease significantly after starting xyrem/xywav/lumyrz?

Is Xywav available in the UK? Can't seem to find a proper answer anywhere. Thanks

I have homozygous alleles of the C677T variant. Meaning I don't convert folate to methylfolate like I should. So I have to take methylfolate. I also take methylcobalamin (methylated b12) to help. I think taking all methylated vitamins would help honestly. But I wondered how many of us have this. I have narcolepsy type 1. I read somewhere that a lot of people with narcolepsy have low b12 and vitamin D. I wondered if they were checking the methylated b12 and if the MTHFR gene mutation played a role so I'm just trying to get a census. I also wonder if you have it, which combination do you have and how bad are your narcolepsy symptoms? Though I realize it can be varied.

Hi all! Just to be clear, I’m not looking for medical advice or anything—I have an appointment with a sleep specialist but it’s booked all the way out in March. I am mostly just curious to see if anyone has had similar experiences re: IH and psychiatric medications.

I had insomnia as a child. My mom started giving me sleep aids like Advil PM and I took that for years before being prescribed Ambien at 16. I am diagnosed with bipolar II and have been on a variety of sedating medications over the years. There was a time in my early 20s where I would get home from work and immediately go to sleep (7pm) and sleep until the very last minute (8am). I have been known to sleep 12-15 hours at time.

I was diagnosed with severe OSA almost 5 years ago and religiously use my CPAP every night. My sleep data looks good according to that doctor.

My psychiatrist and I thought that Abilify was the culprit of my excessive daytime sleepiness. I wasn’t willing to stop the Abilify because it felt like playing with fire. She prescribed me Modafinil which improved things a bit.

After 10 years of being on Abilify, I finally weened off this summer after being so sick of the sleepiness. Unfortunately, nothing improved. I can usually make it through the day with 200 to 300mg of Modafinil but it’s a real hit or miss sometimes. I work as a therapist so it’s really, really not ideal for me to be drowsy when I’m with clients. I work from home and even on my best days I find myself taking naps.

When it comes time for bed, I struggle to get to sleep. I have now settled on taking an edible so I can knock out.

Curious is this lines up with anyone’s experiences! Really looking forward to the sleep appointment in March, and holding out for a cancellation so I can get in earlier.

Thanks everyone!!

I have never been diagnosed with a sleep disorder but that’s probably due to my aversion to hospitals. I have been falling asleep in strange places my whole life. In high school I frequently fell asleep in class but I still made good grades so nothing was ever done about it. I once fell asleep in the third row of a rap concert. As an adult I frequently fall asleep at my job, sometimes even while im on customer service calls. I quickly snap out of it but the older I get the more I recognize this is not normal. I have issues driving long distances and if I’m by myself I need a lot of caffeine, nicotine and loud music to keep me awake even after a long rest. Does this sound like narcolepsy from people who have it?

I figured I'd post this here as it seems like the treatment for Narcolepsy and IH are very similar. I got diagnosed with IH 3 weeks ago. The doctor said he starts everyone on Armodanifil or Modanifil and then follows a "typical" progression of other meds if they don't work. Armodanifil has caused some depression (I am on Bupropion and it works great for my depression) and quit providing any "wakefullness" about a week ago. I have my follow up in a couple of days. What is the typical progression of meds for IH? All he really said when he put me on Armodanifil is that he starts with the least addictive options that have the fewest side effects for most people. He said he then keeps working up the scale until he finds something that works. He also said insurance companies usually want to see a progression like this before he writes a script for the more expensive meds which they don't like to approve unless you've done the cheaper options already.

Can someone please outline what the "typical" progression looks like for meds? Thanks!

So far I've had 3 nights of xywav. After the first night I woke up and cried of relief I hadn't had deep sleep like that in years. The last 2 nights I've had very vivid anxiety inducing loop dreams and the worst nightsweats I've ever had.

I'm obviously on a low dose. Is this normal and I just have to tough it out for 2 weeks till I up my dose? I feel so discouraged right now. Today i woke up feeling hungover/sick.

Please tell me this will pass and it'll get better. This is supposed to be my miracle drug. If this doesn't work idk what I'm going to do next I've tried everything.

EDIT: THANK YOU SO MUCH TO EVERYONE. YOU ALL ARE THE BEST. Please keep sharing, I will read and respond to more tomorrow if anyone else has something to add.

Hi, has anyone else ever had this issue with a therapy program/therapist? Could use some supportive words, advice, etc. Open to anything, really. Long post, so BIG thank you if you read and reply <3 TL;DR at bottom.

My sleep doctor (who is a psychiatrist but only practices sleep medicine) prescribed Vyvanse 30mg to me for years, and I was thriving on it. I completed a highly specialized intensive therapy program that changed my life, and I want to enter the step-down program. However, my former therapist there says that I am required to stop all amphetamines or methylphenidates for 60+ days before applying, and I can't take the meds during the treatment (which is one year long). I believe she led this choice, and she explained to me that it was supported by "the team," which includes the resident psychiatrist who was there at the time, and other therapists. My sleep medicine doctor was not consulted.

I got off the meds and have been on armodafinil for about 90 days, so I put in my application about 30 days ago, but I'm thinking about rescinding the app even though I should have an intake soon. I'm on 250mg, and I'm disabled. I'm depressed, and I feel like a shell of myself most days. I struggle to do basic tasks when I'm not fighting my way through school. I'm always sleepy, and I have sleep inertia as bad as if I took nothing. I didn't feel this way before starting it. My former therapist said she wanted me to stop taking Vyvanse because she believed it impacted my affect and that I was more "accessible" mentally/emotionally when I didn't take it. I had a sleep study while in the program and had to be off meds for 2 weeks, so that's where she got that from. The problem is that me being unmedicated ≠ me on a different medication. I also just disagree with that assessment, as I made such extensive progress while taking Vyvanse, but I can't argue with the program. She is a professional, and has a reason I probably just don't understand.

Therefore, I can either comply or find help elsewhere. My last option is Xywav, which I could could try next spring at earliest. If I tried Xywav and it failed, I would be effectively barred from the program unless a new medication entered the market, as the program also requires full time work (30hrs) or school. I cannot handle full time work with armodafinil.

This place helped me change my life in extreme ways, and there's nothing else like it in the country. I have tried to go elsewhere since finishing the main program and it hasn't worked out. The few therapists that provide this type of therapy are very expensive because they can be, as very few people offer it (I'm talking $350 per session 2x/wk). I went to one in training who offered $150/session 2x/wk for about 9 months, but it was financially unsustainable even with out of network benefits. I have been going to someone for a different type of therapy because they are affordable, and it's been largely unhelpful. I went to someone at my school, but they only offer temporary help. I'm thinking that if I can wait to try Xywav and it works, then I can re-apply to this program at a later date.

Has anybody else had a situation where their therapist questioned their medication or straight up told you you can't get treatment if you take it?

TL;DR: Went to a one-of-a-kind therapy program that changed my life. Want to enter their step-down program, but therapist won't let me in if I take Vyvanse. I failed other meds, and my last option is Xywav. If it fails, I'm effectively barred from the program. Other therapists haven't worked out, and accessing the help I need outside of this program is difficult without a lot of $. Seeking advice, support, or anything really.