My doctor was trying to get Xywav approved through my insurance...my formulary for my insurance says they will cover it. It kept getting denied and my insurance came back at me Sunosi, Waxix, and Xyrem (all which are NOT PREFERRED in my formulary).

So I got a phone call from my doctors today saying they had a rep from Xywav come in today and explained to the rep my doctor was trying to get it approved and insurance kept denying it. They told me the rep said I will qualify for Xywav for free, they just need to send the paperwork of the insurance denial to Jazz Cares. Has anyone else had this happen? It seems a little fishy to me...but I am signing a paper on Monday and my dr office is sending everything.

If this is for real...this MAY just be the break i have been waiting for for so long...because if I get the xywav through Jazz, thats not my insurance...so then we should have no problem getting my insurance to approve the Sunosi (because they came back at us with Sunosi listed on the denial) and those 2 meds were the plan to begin with...but there's a HUUGE chance that my insurance would never cover both of those meds together. Lucky break finally?? I've learned not to get my hopes up about anything.

But the sample pack of Sunosi did me WONDERS...I was productive that week and made alot more money at work by working more, cut the grass, etc. Soo much better than this adderall I'm on now. It does do certain huge things for me, but bad side effects lingering

If anyone knows anything about this, please comment. It seems way too good to be true, and too easy lol

For those on SSDI, any loopholes to the whole not working at all for the 2 years it might take to be awarded SSDI? I hear if I work at all it will hurt my case big time. I’m too unwell to work much but if I got some word of mouth online or in person tutoring a few hrs a week can I have clients pay via a Venmo, Paypal or Zelle account that’s linked to a family member? (I think Zelle is the least regulated but not sure ... ideally I wouldn't have to have my retired mother file taxes that I then pay, just because made $500 a month in tutoring). Then once a month or so that family member can give me cash or a visa gift card so there’s no paper trail or money from my work hitting my bank account? Otherwise how do people survive 2 plus yrs on little savings and no one paying for their life? I don't know of part time or hourly jobs that pay cash I’m really discouraged. I've heard it can take 2 years even with a lawyer which I have.

is it common to sleep during whole afternoon?

Hi all,

Sorry if this is the wrong place to post this.

I (28F) have been seeing a sleep neurologist for almost 8 months now. Since I was 11/12 I have been very tired all day no matter how much sleep I get, have intense and frequent hynagogic hallucinations, and experience sleep paralysis and few times a month. I also wake up every night about 20-30 minutes after falling asleep. Sometimes these wake ups are accompanied by hallucinations, sometimes extreme confusion, and sometimes just a rapid heart rate. The doctors originally thought I had narcolepsy. I completed a PSG/MSLT which showed a sleep latency of 6 min but normal REM (on my first PSG my REM was 55 min). I slept 4/5 naps on my mslt, but had a normal sleep latency and no rem.

My doctor said this pretty much ruled out narcolepsy and IH, but was still suspicious enough to send off genetic testing. The plan is if this comes back positive, she will consider ordering a Lumbar puncture since I experience a jelly-like feeling in arms and legs when afraid/surprised. She said this would be considered atypical cataplexy if it is.

The other thought she had is that i could be potentially experiencing nocturnal seizures and referred me to neurology/epilepsy specialist. However, it's going to be almost 5 months before I can be seen because they are booked out.

Has anyone experienced or know anyone who experienced something similar and it ended up being seizures? Or they ended up having narcolepsy when a lumbar puncture was done but had a negative MSLT? I know this is a narcolepsy forum, and a few things can mimic narcolepsy, but I really just want to figure this out. I'm tired of it affecting my life for the last 16 years.

For reference, my doctor said that I didn't need to see Psych (referencing thay mental health conditions can cause similar symptoms). My Labs are always normal and I don't have any other medical conditions.

Generally, the chances of hereditary narcolepsy are around 1 percent. However, my family has a history of it going back multiple generations. My parent and I were the first to get diagnosed—with sleep study and genetic testing—due to access to medical specialists that were not available to my ancestors in rural areas. Some members had obvious symptoms but not severe enough for a formal diagnosis. On the other hand, other members would fall asleep while you were talking to them and everyone would just say that is what they do. This has been going on for well over 5 generations with different people having different levels of severity. Anyone have a similar experience?

Although narcolepsy and MDD both can show sleep onset rem periods and abnormal distribution of slow wave sleep. I did find a difference between the SWS distribution between the two with links below.

“In narcolepsy, individuals often exhibit significantly reduced slow wave sleep (SWS) during the second non-REM sleep period, meaning the deep sleep stage is considerably less intense compared to healthy individuals, contributing to the overall disrupted sleep pattern characteristic of the condition; this is often observed alongside frequent awakenings and early transition into REM sleep

Studies show that people with narcolepsy have a lower amount of slow wave activity, particularly in the second NREM sleep cycle, compared to individuals without the disorder.”

https://pmc.ncbi.nlm.nih.gov/articles/PMC1978383/

“In individuals experiencing depression, research indicates a disrupted distribution of slow-wave sleep (SWS), often showing a higher amount of SWS activity during the second non-REM sleep period compared to healthy individuals, where the majority of SWS usually occurs in the first sleep cycle; this means depressed individuals may have a more prominent "second period" of deep sleep compared to the typical pattern. “

https://pmc.ncbi.nlm.nih.gov/articles/PMC3181883/#:~:text=In%20the%20normal%20subject%20the%20amount%20of,these%20sleep%20architecture%20abnormalities%20are%20present%20during

I already know about and experience mixing up dreams and reality. But does this ever happen to you during the day, unrelated to a dream? For example, I may have a perfectly clear and detailed memory of packing a bag in the car 30 mins ago, only to find that I didn't. It's like being placed in an alternate dimension, like being in The Twilight Zone. Does anyone else experience this?

I'm becoming increasingly convinced that sodium oxybate might be the best option for me. I have some basic sleep study data as well as a TON of objective observations/symptoms that made my neurologist positive I have N1 w/severe cataplexy, so I do have a clinical diagnosis, but I don't have definitive MSLT data because I'm not a good candidate to go completely off all of my meds. My neurologist recently prescribed Wakix and was actually pretty surprised that insurance approved it without MSLT data, but I guess his testimony was enough.

When we were discussing the likely battle to getting Wakix approved, he discussed diagnostic options with me. I really can't do another sleep study, they have been an absolute nightmare, so I asked about a lumbar puncture. He was pretty shocked I wanted to do that over another sleep study even despite how badly they've gone for me but he was on board. Yes I've had the procedure explained to me in very graphic detail, as well as been made aware of the risks, and I still think it's preferable.

Here's the thing: My neurologist isn't enrolled in REMS, so if I want to pursue sodium oxybate, I'd have to switch doctors. I think it's unlikely I'll get as lucky as I did with Wakix and will most likely need diagnostic data, not just for insurance coverage but possibly for the new doctor to be willing to even prescribe it. I'm wondering if I should go through with a lumbar puncture with my current doctor in case the next one wants me to do more sleep studies instead.

All of this is stuff I'll be discussing with my neurologist at my next appointment, but ultimately I think my ability to get a lumbar puncture will come down to cost. I might have to pay completely out of pocket for it. So, out of curiosity (and so I can prepare myself), for those of you in the US who had this procedure done, what did you pay? Were you able to get any insurance coverage and if so, how much? What was your copay? If you paid out of pocket for the whole thing, how much did it cost?

Recently been diagnosed with IH. I’ve tried Sunosi and many stimulants that have NOT worked for me. Waiting on Wakix, which I’m told will be an insurance battle for sure.

I’ve been recommended by my psychiatrist and therapist to get a full psychological evaluation/testing done as well because they suspect OCD-like symptoms along with my BPD and bipolar 1. In general, they want a comprehensive test done to see what else is there in the mix and give me further clarity.

IH affects me, as ya’ll know, in so many different ways. My mood, mental performance, focus, attentiveness, reaction times, sleepiness, fatigue, motivation, drive, ambition, impulsivity, executive function, etc. is all affected and impacted by this disorder. Would they still allow me to get a full psychological evaluation/testing with this in mind, especially if results may be skewed? Would it be worth it to pay so much for testing to get it done even if they reassure me it won’t be a problem, but I feel otherwise? Testing is also exhausting and a multiple hour affair. Has anyone been through this and can offer advice or help?

I did a PSG about two weeks ago and the report recommended a repeat PSG + MSLT. My doctor put in the order and it will be sent to my health insurance for prior authorization. In your experience will health insurance approve a second study this soon?

Just found out yesterday that the prior authorization for my Sunosi was denied by my medical insurance. It turns out that then new Cigna (and possibly other carriers) policy states that it does not approve "Concomitant Use of Sunosi with an Oxybate Product and/or Wakix" stating that there are no studies that evaluate combining these medications.

This policy change went into effect on October 15, 2024 and could impact your Xywav/Xyrem/Sunosi/Wakix approval, depending on which PA is next evaluated.

I'll be going through the appeal process, but I'm not sure how likely this will get overturned.

Good luck out there!

Read the full policy: Cigna Coverage Policy IP0102 Sunosi

Hey there! I have N1 and currently im only on Xyrem because my body would not tolerate the Ritalin.

The sleep on Xyrem has been great. I dont feel the need for taking hour long naps throughout the day.. half an hour is enough to feel energized again. I have a doctors appointment soon to try a different stimulant. I am on Xyrem for two months now on a dose of 2x3g.

Since starting the medication i lost 7kg, had constant bloating and stomach cramps (exacerbated by the Ritalin, but today I have similar symptoms from drinking coffee), joint pain in my knee and now i experienced a UTI (bladder infection) as a 30 year old male. These are all issues i never had before. And generally speaking i dont feel better than before. Mentally i dont feel good as well because of the constant issues.

Right now i am thinking about talking to my doctor about stopping the medication entirely.

I feel like i was happier and more myself before starting the medication.

Did you have similar experiences while on medication? Since i have no one to talk about it i would really appreciate your insight.

I sometimes turn off my alarm in my sleep but I naturally wake up exactly 5 hours after my first dose. Missing my second dose means I’m just going to have an awful day and I’m unable to go back to sleep 😭😭 has anyone taken xywav at 5 hours or is that not a good idea

I work in accounting doing reimbursements for travelers so in a nutshell, I look at receipts all day and determine whether or not we will pay them back in full or partial or if it should be denied, etc.... Every aspect of my job is timed and there is a time that I need to be under and a low amount of mistakes that I can make or miss.

I'm having a hard time meeting the metric even though I'm literally working myself into a panic and never stopping just trying to get my time down. All of my work is reviewed and anything I miss is noted and figured into the metric. I've been working at this job since January and doing it on my own (after training) since March. I haven't been able to meet the metric that they set as the standard of where you need to be to get off being reviewed by someone else yet so now my lead is giving me the "if you don't get to 12 minutes per trip, we're going to have to talk about our options." Meaning do it and do it now or you'll be fired. She just told me that on Tuesday and I have a week. I can tell you now, it's not going to happen so I feel the time has come to ask for accommodations.

I have not disclosed to my lead that I have Narcolepsy with Cataplexy although I did briefly mention having a neurological disorder and described cataplexy symptoms so she would understand why I chose to do one thing over doing another and that was that. Never mentioned it again. I contacted the accommodations team today to get the ball rolling and emailed my doctor to get a letter and whatever I might need from them. The letter she wrote is not great letter. It just says that I have Narcolepsy with Cataplexy and sleep apnea and should be given more time to complete tasks. Period. Is that enough? I have not spoken to my lead yet. (On top of just having a week to drop my time by 6 minutes per trip, we also moved our office from one building to another one today so that's just a lot in general for someone like me.)

So my question is how do I ask for more time? Like how do I word it? Things are going to take me a little longer than normal people. I may forget things, even though I keep a lot of notes. It is going to take me longer than others to learn everything and honestly this might not be the task for me. I work in Accounts Payable for a huge company so trust me when I say there is PLENTY of other stuff I could do (I'm excellent at one other task I have assigned to me) but they won't even let me try if anything else if I don't meet the stupid metric, which seems impossible to me.

My lead is absolutely the wrong kind of leader for me. When I tell her that applying pressure to me and threats of firing if I don't meet this time makes things worse for me (like fear of losing my health insurance and pay check at a job I really really want to keep is giving me some high fucking emotion to sit in all day so I'm sure you can relate to my body drain and scrambled brain all day that I'm dealing with here) she just doubles down on it and keeps doing it. I've told her many many times how to get the best out of me and she will not manage me in the way that is best for me. I leave our weekly meeting in tears almost every week. It just sucks.

So I need extra time and less pressure and probably a change of duties or at least an opportunity to try other duties to find something that is not as quick and tedious as the travel reimbursements. They've taken anything else that I was doing away from me so the receipts are all I do for 8 hours straight because if I take a break, that time is going on my metric. I never stop working. It's insane at this point.

As you can probably tell just by reading this, I'm highly emotional about this. I do not want to be fired. I know that I can be of value and I'm a reliable, good employee that people enjoy working with that never says no to helping out with whatever, etc. I need help in figuring out how to put this all in a very business like non-emotional way and not like, "I need this bitch to get off my ass and give me some extra time or let me try something else that needs to done because I've only slept like 3 hours (I also have raging insomnia and can't take Xyrem or the like) and my brain has fog and my body feels like it's moving through molasses and my fingers aren't working because she's threatening my fucking health insurance right now and all I can do is sit and cry and flip through receipts as fast as I fucking can but I can't see straight because I AM FUCKING TIRED and and and.....

I'm not even asking for nap time or anything like that. I definitely microsleep at my desk, especially in the afternoon but that's just another thing that makes my times stay high so just another reason why I need extra time.

Ughhhhh. I do not want to get fired. I am still fairly new to the very real affects of Narcolepsy as I was just diagnosed at age 50 in 2020, right before the pandemic shut down. At that time I was working a job that I had been at for 5 years already and was the authority on so working was automatic for me at that point. I didn't know how learning a new job would go when I started here. I'm smart and usually the rockstar at any job I've had because I like to do well . It's extremely frustrating for ME that I'm not getting there. Which of course makes me feel some sort of way, which then makes my body not act right, which then makes my brain go dead, which then makes me want to lay on the floor and go to sleep. Sigh.

So I was recently diagnosed and am receiving treatment (sunosi) after a year of working with my doctor for EDS and severe hypnagogic hallucinations. At first I felt so relieved and could see the light at the end of the tunnel. But the meds aren’t working (I know it’s still to early to say for sure), and I am worried my life will continued to become more unmanageable as I struggle to stay awake.

I am in my second and last year of grad school. I am on the verge of flunking all of my classes. I am working with my school’s disability services and everyone has been helpful. But I am unable to complete basic tasks needed for survival, let alone school work. What’s worse is I was always a high achiever and had big plans for my life. Now I feel hopeless. Even if I graduate, I feel uncertain that I will be able to hold down a job. Even when I’m not sleeping, I’m exhausted and the brain fog is unreal. I can barely focus for an hour at a time and it’s hard to form thoughts/sentences.

On top of dealing with feeling disabled, I am almost a year sober. I was a severe alcoholic for the past 8 years. I was functional, and even though I was severely exhausted my addiction was my main priority. So I was able to achieve in order to keep using. Sleep was an issue, but I assumed it was all addiction related.

My doctors were so hopeful for what my life would become as I got sober. I was promised energy, health, and peace, but unfortunately we didnt know I had sleep disorders. I want to say I am still so thankful for my sobriety and will not relapse. However, I feel like I’m wasting my sobriety in bed.

Sorry for the long rant and negativity. I am just feeling really defeated and sad. I know I’m not the only one going through this, so I would appreciate hopeful thoughts and advice that have helped you get through the lows of narcolepsy.

P.S. how do you communicate this illness to others? I am tired of saying I am tired. People don’t seem to understand the severity, and I get unhelpful responses like “we are all tired”. I feel embarrassed for making excuses. I mostly just tell people I’m sick without further explanation, but I want to be able to communicate to those close to me so they can understand.

So I've got pneumonia on top of everything. First round of antibiotics didn't handle it, So I started a new course today. Tomorrow... I also start the week of Prednisone they gave me. God I love that stuff. Any time I've had it, regardless of what illness demanded the steroids, holy crap it's like my narcolepsy just evaporates. Part of me looks forward to getting this sick just because I know I'm going to feel normal for a few days on the steroids. But noooooo. Can't stay on corticosteroids forever. Our fragile little bodies can't handle that. Osteoporosis. Cataracts and glaucoma. Liver and kidney damage/failure. Edema (from the aforementioned kidney issues).

Someone needs to invent a steroid with all the benefits and none of those nasty body destroying effects. Id happily let my insurance company pay 20k a month for that.

Here's to a week on 50mg Prednisone.

Has it affected your employment or licensing? Are you able to be excluded from overnight call if it is typically required for your position? What sort of “reasonable accommodations” are you allowed?

I'm rapidly running out of options for treating my insomnia. My current neurologist has honestly been pretty great for the most part, and he did help me get on Wakix which I've been on for a month now and hopeful it will help with my cataplexy. That's kind of my biggest hesitation personally with asking again about Xyrem - I kind of feel like if my cataplexy gets under control, I won't have as much of a reason for starting Xyrem. Ultimately I'm planning on waiting until my next appointment which is like 4 months away, so by then I should have a better grasp on how helpful Wakix will be.

But even if my cataplexy gets under control, I still have horrendously fragmented sleep. I cannot physically stay asleep for longer than 45 minutes or so, and when I wake up, I need to get up and do some sort of activity or I will be in physical pain from the restlessness. Overall this results in me getting maybe 3ish hours of sleep on a good night and trying to make up for it throughout the day with short naps. I'm probably averaging 4.5 hours of sleep per 24-hour cycle, closer to 5 hours if we're counting the constant microsleeps of less than 5 minutes. I've had fragmented sleep for as long as I can remember but it has definitely gotten worse.

I'm trying one more sleep medication, but after that, I'll have pretty much exhausted my options for sleep aids that aren't sodium oxybate. Overall, my wife has been extremely supportive of me throughout our relationship. She was the one who pushed for me to see a neurologist and has generally been an amazing advocate for me. She has supported me through repeated job loss over my symptoms. But she is ADAMANTLY against me trying sodium oxybate. She says it terrifies her and she doesn't think the risk is worth the possible benefits.

My wife is only open to me trying sodium oxybate if she personally dispenses every dose and keeps my meds under lock and key. It feels... infantilizing. Not to mention completely unsustainable as she would not be willing to wake up at night to dispense the second dose. IDK what to do here though, she panics so much every time I bring it up and I'm not sure if it's worth it.

Hello, I was diagnosed around 3 months ago with narcolepsy type 1. Is there someone in this group who is or has been in the military with narcolepsy and was Med boarded ? Today my refferal to the medical evaluation board was started, any advice on things that aren't implied when going to the process or anything else that I should know?? Thanks in advance...

Mine is a dripping water sound or white noise distortion, coupled with a feeling of someone or something approaching. That's when I become aware of it happening. I then try to physically move my head to force myself awake.

So obviously we have wild dreams. Mine are so vivid I remember them as if it’s a memory.

Last night I dreamt there was an intruder and I had to protect my family.

Long story short I had to break the persons neck. What’s worse I didn’t fully commit and had to do it 2 times.

I woke up wanting to throw up. I could feel the snap. Litteraly feels as if I did it but it was a dream.

Ya go narcalepsy !! lol

Originally, I started this post out as a question in an attempt for validation, but I think it qualifies more as a sad rant.

Today I logged onto my EHR to reconfirm when my next med check appointment was scheduled. I noticed a new entry of a refill that I had requested, and clicked on the link to make the bolded text notification go away. I was about to click back to the main page when a note at the bottom of the page caught my eye.

It said: History of early refills: Yes

For whatever reason, this hit me hard today. I'm probably preaching to the choir here, but I don't like the fact that I rely on medications to be able to stay awake. Refills are always a pain, as usually at least one if not two of my medications are not available and need to be ordered/given in smaller amounts because of supply.

My doctor is great, shes always been encouraging and helpful, as have the nurses and even the front desk staff. They all at separate times have given the advice to place the refill request early to hopefully have these things sorted out before I run out of medication.

It just sucks to see that in my efforts to be more responsible and ensure continuity of medications is recorded in a way that makes it look like there is a possibility of drug seeking behavior.

I started my treatment a month ago and it was with 150mg of Nuvigil. My doc is changing my doses to two times a day, 9am and 2pm doses of 200mg of Modafinil. She said it is easier to go to a higher dose of Modafinil than a higher dose of Nuvigil. Has anyone been switch to medication like this? I figured we would try a higher does of the first type.

Nuvigil only lasts about 3 hours for me, then I have to crash.

My boyfriend (23M) is diagnosed type 2 narcolepsy and has been for a few years now. Both him and his family have had conversations with me about how he’s always had a difficult time expressing his feelings and emotions.

He’s almost never in a bad mood. He’s so laid back and it always seems as if nothing aggravates him. He doesn’t get worked up over anything.

At the same time, he’s an outgoing person and is great with people in general. There just seems to be some disconnect when it comes to expressing himself through words.

Just wondering if there’s any connection with the narcolepsy or if anyone has experienced anything similar? Just curious. TIA.

I just picked up my perscription and I noticed it said IC dextroamp-amphetamin. is this different than normal adderall? the pills look a little different aswell

I live in Eugene, which has a decent public transportation system, but it still takes about quadruple the amount of time to get anywhere, compared to driving. If I have to go anywhere last minute, public transport is out of the question, as most buses only show up every hour or so, and Ubers/Lyfts are so ridiculously expensive that it's unlivable. Last week I spent an hour on buses getting to a 20-minute appointment that would have been a 10-minute drive away. And an hour getting back home. When I need groceries, I either haul as much as I can carry on the 15-minute walk to my house from the nearest bus stop, or I spend too much money having groceries delivered. And finally--oh, the irony--I can't find a sleep doctor/clinic close enough to me that I can reach them using public transport. Narcolepsy (or, rather, the societal structures that do not adequately accommodate it) is preventing me from accessing medical services for narcolepsy.

Don't get me wrong, I understand why I can't drive. And I can appreciate public transportation and walking and carpooling for all that environmentally-friendly stuff, and even just for the sake of learning to slow down and simplify. But at the end of the day, I still have to run errands that are out of the way, I still have busy nights when I need to swing by a fast food restaurant for a quick meal, I still have homework that I can't do while I'm watching for my stop on the bus route, I still have appointments I need to be on time for, I still have family I want to visit, I still need every minute in the day to work or go to school or do homework or NAP or, heaven forbid, have some fun, and not being able to drive makes a lot of that impossible, or discriminately inconvenient. I could have it a lot worse, I know that. But I guess it feels like this "small" thing goes so unnoticed, and if it can't be changed or accommodated, I wish it could at least be recognized for what it is: incapacitating and disheartening.

A chaffeur would be cool, but really I just wish there was a better system in place to allow for transportation without the ability to drive, whether through public transit or free carpooling services or transport/delivery vouchers or something. For those of you who can't or don't drive because of narcolepsy, what has your experience been like? What is the most frustrating/inconvenient? What adjustments have you made to accommodate it? What do you wish were different, or what accommodations/resources do you wish were available, that would make not being able to drive a bit more livable?

Needed to rant, thanks for reading <3

I don’t even really eat carb heavy meals. When I have a big meal i just crash. Yes i understand there will always be a blood sugar response to any food you put in your body causing a dip in energy. But do smaller meals throughout the day work for you better? I also understand anecdotally low carb diets help? What’s your diet and meal schedule like? Give me all the details. I’d ask my doc but he seems to know fuck all and just gives me meds without even talking to me about them or side effects. I’ve been having to use the internet to figure all of this out on my own.

I have super realistic dreams and sometimes I’ll have cataplexy episodes in them. Not like sleep paralysis where you are where you fell asleep. But like in the story of the dream you’re having. It’s weird.

Little tricks that you’ve discovered but are not the common ones most people have seen already like exercise more or eat healthy.

Hello. I’m curious if anyone has tried modafinil, and started to feel more heavy and more brain fog, etc.?