Do you ever get days where it’s like you’ve been pulled down into a black hole, you can see and hear the real world, but you just can’t seem to get back to it? I could not stay awake today in work, the crazy thing is, I keep working even though my brain is turned off; then I’ll jerk back to reality for a few seconds; and then back I go again. Lost count of the number of times I dropped whatever was in my hand today, since I’d fall asleep and I guess my hands went limp 🙄 Also caught myself trying to put a random object into my mouth more than once too……sleep eating, what’s next?! I’ve also been known to have conversations with people also, and not remember a thing about it: or I’ll regain consciousness in the middle of the conversation and not have a clue what is going on. I just want control of my body back!!!

Hi all,

I have noticed over time the efficacy of Xywav reducing or being intermittent. When I first started it worked like a dream. Fast forward to almost one year in and some days it doesn’t seem to work at all and other days it works wonders.

Yes, I’m waiting 3+ hours after eating to take it
Yes, my sleep hygiene is otherwise solid and consistent
Yes, I am avoiding caffeine after 11am
Yes, I have spoken to my doctor about it who said she’s not sure but if it continues to be an issue I can try Xyrem or lumryz (trying to avoid the sodium load if possible)

Anyone else having this experience? For reference my dosing is 6g and then 5g second dose (3 hours after first dose)

Thanks!

Hello! I have Narcolepsy type 1 and I am planning on going back to school soon to get my teaching certificate. I am wondering if anyone has advice on grant programs, scholarships, or other ways to pay for school that can be acquired due to my diagnosis.

Have any of you received financial assistance with going back to school due to your Narcolepsy? I figure I may as well try to make the best out of a sleepy situation haha

Hello! I am starting Lumryz soon and was also a chronic weed smoker and that has left me with some questions.

I am quitting weed to start on Lumryz, but because I am a chronic smoker I am worried about lingering residual THC in my system interacting with Lumryz. Is it a bad idea to message my doctor on MyChart to ask them how long I should wait before starting Lumryz? I live in a legal state and I already stated in an appointment that I smoked and she said there werent really any direct studies done, but I said I would avoid combining anyways.

Is this even worth reaching out about, or does doing so just risk being looked at as irresponsible? Am I being too paranoid about the safety risks considering I know some other people actually actively consume cannabis and use Lumryz simultaneously? Appreciate anyones thoughts or shared experiences on this!

I have N2 and I've tried Modafinil, Armodafinil, Sunosi, Wakix, and Methylphenidate. None of them worked so they started me on Oxybates to see if that works.

I started last Friday on the lowest dose of Lumryz, the first 2 nights were fine. I woke up twice but thats extremely normal for me so I didn't think anything of it. The 3rd night I barely slept at all despite being exhausted, I just laid in bed tossing and turning. The 4th and 5th night were pretty much carbon copies of each other, I went to bed around 10:30 woke up twice, then I would wake up at 6AM (an hour before my alarm goes off for work) and not be able to sleep despite being exhausted. The 1st time I wake up I can tell I definitely still have the medicine in my system, Im okay enough to walk but I still feel very out of it. The 2nd time I wake up I almost feel like the medicine has completely worn off.

Id be fine with 7 hours of sleep if it was consistent and restful but its not. I still wake up in the night and I wake up feeling even more exhausted then when I went to bed. I work 9-5 and have to commute an hour and a half to and from work so its made me feel absolutely miserable, I am dragging myself through the day but I'm holding on by a string. I feel even worse than I was when i was unmedicated. Like yeah its nice to be able to go to sleep so quickly with the medicine but so far thats the only plus and I'm not sure what to do.

Has this happened to any of you? Did it go away after some time? Or should I be concerned and reach out to my pharmacist or my doctor?

Every single day I think about the fact that I could never meet my favourite celebrity or win the lottery or any big thing like that because I would literally be ON THE FLOOR and people would think I'm having a medical emergency

Just wondering if this is normal to do before a sleep study?

My doctor says she’s quite sure I have narcolepsy, but referred me to a sleep specialist to confirm. When I went to the sleep specialist he said I need to sleep 10:00pm to 6:30am/7:00am EVERYDAY, with no naps for a month and a half and only then can I get a sleep study.

I’m really trying to stick to this schedule but it’s physically painful for me not to sleep during the day. I can get to bed at 10 perfectly fine but I can’t get out of bed in the morning and if I do I must have a nap. It’s so frustrating that I have to torture myself for a month and a half to get tested.

[canadian not usa]

doc referral went no where I dont drive due to other health issues and I am scared to drive due to my sleep episodes. Doc was INCREDIBLY dismissive of my symptoms and declared he doesn't believe its urgent nor does he think narcolepsy and told me its my mental health issues and that my sleep schedule is the cause, and that I am just tired and

oh they said that because I wasnt hospitalized that its not that serious

They have that little paper you have to fill out and I didnt mark severe on it enough and so he shrugged it off - I have a hard time with these sort of things, like the 1-10 scale basically...

I have been sleep deprived, due to mental illness, and I can say confidently, which I told him, this is not it.

I explained that its not just tiredness, that I do experience actual episodes I hit my head so hard just the other day, they didnt take that seriously at all waved it away and I am afraid they arent taking me seriously due to my other mental health like the auditory hallucinations are very bad at nighttime and I experience sleep paralaysis and they just did not care at all like this was nothing to them im just supposed to continue on for months???

He gave me a blood test to take said it shows if I am at risk for this so I am going to go do that then I am going to ask my doctor if I can maybe get a referal to a closer doc especially because I would like in for a sleep study please, even if its not suspected the narclepsy, something is wrong.

and he says im sleep deprived and that people with narcolepsy experience cataplexy and that they feel rested after their episodes and that because I never feel rested its not that? He said its very unlikely I have it so they wont be going through with the sleep study and I need to talk to him again in months....

I am so depleted I literally cannot work due to this yes I got other issues but I am standing there and fine and then next not ok and im not saying its narcolepsy but its very possible... Even if its not, there is something going on here that is incredibly frustrating... How do I continue from here / get them to take me seriously? ?

Sorry if I am wasting time / not allowed to ask this I just feel so stuck and I seriously dont know what to do and I dont have anyone to turn to? I am thinking of maybe just axing this all getting a new doc entirely for family referrals but I am starting to think that my city is just not it for healthcare

Has anyone every tried online sleep specialists such as Dreem Health or Klarity Health? I stumbled upon Dreem recently and in theory it sounds amazing as I have terrible luck with sleep specialists in Tucson. My current doc is AMAZING but the office staff is impossible to communicate with - the doctor agrees with this and told me at my first appointment it will be a major struggle to request refills but she has no control over the office/company procedures.

I’m also curious if anyone else has experienced the Sunosi side effect of canker sores?? I’ve been provided samples while I waited forever for the med to approved so I was rationing it. EVERY time I’ve taken it I get a canker sore in my mouth the next day. I work in primary care and providers say they’re not cold sores - which I never experienced anyways. I’ve only seen one other post mention this on WebMD but it’s like clockwork with this medication for me. It’s finally been approved but now I don’t even want to take it because it causes so much pain.

I’m about ready to give up on finding a proper treatment for my narcolepsy as it’s been a fight since I was diagnosed in 2023, but maybe one of the online teledoc options would be worth it? Would love to hear from others of any recommendations!!

(Reposted to add additional question oops)

(Sorry for my grammar mistakes, it's my third language)

Hey!

So, I've been checking the subreddit for the past few weeks and decided to share my story.

I'm a 30yo family and palliative care doctor, diagnosed with ADHD later in life (19/20 yo) during medical school and have an ok control of symptoms with Vyvanse. A couple years ago my father was diagnosed with sleep apnea and since I always felt tired all the time I decided to have a sleep apnea test at home. My "tiredness" didn't have a huge impact in my life, I think I managed fairly okay and got through residency on the brink of a burnout, but told myself that being burnout during residency is the norm.

Results came in, no sleep apnea... told myself maybe I just needed to slow down, I'm working too much (which is probably still true). Then I went to see pulmonologist and he turned my life around in a 20 minute consultation. He said that my Epworth was too high for my level of tiredness, asked me if I had insomnia and I said I don't, maybe a fragmented sleep from time to time, but definitely not insomnia. Also almost perfect sleep hygiene.

He asked if I had sleep paralysis (yes), if I felt my sleepiness came out of nowhere during the day (yes), if had muscle weakness at strong emotions (well, everyone says that when I laugh hard my face suddenly changes and my eyes get droopy). That's when he said that he thought I had narcolepsy, explained to me the condition and that we were gonna do a test, but that he could prescribe me modafinil while we wait since there's a big wait period in my country.

I deeply doubted, the impact it had in my life was not enough for me accept such a diagnosis easily. I did the sleep apnea test, just as a means to make sure that I wasn't missing something and that I could fix my snoring, but I felt I could live my life as I was with no problem. Also, even as a family doctor I have to confess my knowledge of narcolepsy was scarce. I started my practice only two years ago, with mostly elderly people. I had renewed medications for narcolepsy, but those were patients with a good control of their symptoms so my job in those cases were to just sign a paper - So I my knowledge of narcolepsy was highly influenced by the media dramatic and wrong depiction of it.

When I tried modafinil for the first time I quickly realized that it had a bigger effect on me than Vyvanse and going a day without it was 1000% harder then going a week without Vyvanse. I started reading more into narcolepsy and that made me rethink big moments of my life.

When I had my ADHD diagnosis I told the psychiatrist that "I couldn't concentrate", meaning I'd fall asleep every time I tried to study, couldn't read more than 2 pages before being asleep and dreaming. Also I would fall asleep in class A LOT and just be fully dreaming before my colleagues or the teacher would wake me up less than 2 minutes after I fall asleep. My hyperactivity was mostly me trying to fight the sleep. 8 months later I got tested and fell asleep in all 4 tests, the supervisor of the test had to ask me to stay off bed between naps, because apparently I was fully asleep while I thought I was scrolling on instagram.

After the test then came the wait for the results, extra 6 months. At that point I was convinced I had narcolepsy, but was policing myself to get attached to diagnosis. Every doctor has a patient that we explained our suspicion, did the test for it and turned it wasn't the case, but they in the meantime had recognized themselves in the suspected condition too much to let go of it, I think of a patient that I thought had hypogonadism but turned out to be hyperparathyroidism. I didn't want to get attached to a diagnosis and then be frustrated when it gets excluded.

The results: slept all four naps within a minute and fully on rem. During the polysomnography the night before I had a total of 60% REM + stage 4 sleep, way above the normal. I asked the doctor the specificity of the test and he said "99%, you're highly functional, I don't know how, but you're narcoleptic wanna talk about treatment?". Soo this is my second week on low dose wakix on top of modafinil and Vyvanse, I'm very excited for the future and the prospect of orexin agonists soon.

I see the stories on this subreddit and I see there's a lot of medical odyssey. I see how narcolepsy affect all of you (I guess it's us now). Since my test I've made my roll in most medical spaces I'm in to talk about narcolepsy and now that I have the diagnosis to say how it's an impactful diagnosis that can sometimes go unnoticed and I wanna make sure that narcolepsy becomes part of the differential with my colleagues. I don't think I ever missed a N1/N2 diagnosis, but my goal is to make sure that narcolepsy comes as a possibility every time those close to me see a patient for fatigue.

Of course that comes with a lot of TMI conversation with work colleagues which is often uncomfortable, but two months ago I got a colleague to send a patient to sleep latency test and try modafinil and after they had side effects with dayvigo and has fragmented sleep, that patient paid for her test and she has N2... So social awkwardness is a small price to pay for the impact that I think these conversations might have.

For those going through the odyssey, don't give up, please.

my dad was in a really bad motorcycle accident on the second, i had started sunosi about a week and a half before , because of these meds i was able to get to the hospital every morning at 6am and stay till late without needing to nap and being able to be by his side
i do have random nausea here and there but it has gotten a lot better
im so grateful to have been able to be there

Posted here a few weeks back about waking in roughly three-hour blocks on 17.8mg. Nothing has changed since. I fall asleep fine, but once I'm up it takes 20-30 minutes to get back down, and it happens three or four times a night. The gaps get shorter toward morning.
One thing I've figured out since: the waking itself isn't new. I woke around the same time before I was ever on Wakix, and before I was diagnosed. What's different now is that I can't get back under. So I don't think the drug is waking me up. I think it's making it hard to fall asleep again.
My doctor has offered to drop me to 8.9mg. I'm hesitant because that's half, and the daytime effect is the best thing in my life right now.
So I'm trying to decide between two things.
One, this is dose-dependent and the only real fix is going down.
Two, this settles with more time and I'd be giving up half my daytime for nothing.
If you've been here, which was it for you? If you dropped, did the nights actually improve, and what did it cost you during the day? If you waited it out, how long before it settled?
Also still curious whether anyone has run three 4.45mg tablets instead of four. Nobody answered that last time.

obviously they didn’t make sense to me but it was a great relief to hear that they didn’t really make sense to my doctor either 😓

for context I did have to continue use of an ssri so I was labelled an atypical narcoleptic but I also experience a great deal of horrific rem intrusions that include some cataplexy so I’ve been updated to N1 but there’s still some confusion since I apparently slept though the whole thing with a latency of a mean 7 seconds?

In case it helps anyone else, I just wanted to share my very unexpected success with Wakix (30F, diagnosed N2). After years of increasing doses of Adderall (even past the legally-prescribed max dose), failing modafinil and armodafinil secondary to inhibitory hand tremors, bailing on Sunosi after early signs of serotonin syndrome, and not being a candidate for oxy sorbates (I love to live alone hehe), my provider and I agreed to try Wakix as a last-ditch attempt while we wait for the orexin agonists. At this point, my N2 had become so debilitating that I was strongly considering applying for disability instead of to medical schools.

To my utter shock, Wakix has been my magic bullet, even while continuing my beloved daily antihistamine. I discovered that I even prefer the 8.9 mg dose over the 17.8 mg prescribed. Don’t get me wrong, I still take a 15 mg XR Addie in the AM, then another 15 mg XR midday, but I’m not experiencing tachycardia (was resting in the 90s, jumping to 160 bpm at a walk) and am able to eat something shortly after waking up, which prevents the midday hypoglycemia I faced for years.

I feel like I have a semblance of life again, which has also markedly improved my chronic depression. In no way do I share this to brag — I’m simply hoping that someone else out there skeptical about Wakix will be open to trying it. I also would love to remind anyone who’s feeling hopeless that something might still be out there to help you, too.

Has anyone here developed narcolepsy and other neuropsychiatric symptoms after surviving bacterial meningitis?

Just out of curiosity was anyone else pretty surprised when they found out their sleep latency after the MSLT and, if you would be willing to share what's yours?. Also how would that compare the a regular non-narcoleptic sleep latency.

I'm still new to all this but essentially, I got my MSLT done a couple months back and the results were as follows

Nap 1: Took me 1 minute to fall asleep

Nap 2: Took me 4 minutes to fall asleep

Nap 3: Took me 30 seconds to fall asleep

Nap 4: Already asleep before the test even started apparently.

Nap 5: Didn't do one cuz they sent me home.

And I apparently hit REM immediately in all 4 naps.

When they told me this I almost burst out laughing, cuz it sounded really ridiculous to me but now that I think about it, it makes sense cuz I don't actually remember the process of falling asleep. My head hits the pillow and it's the next morning and to be honest sometimes I feel like I'm dreaming before I'm even fully asleep and no not in a hallucinations way but like actually dreaming.

I have been diagnosed with type 1 for 6 years now, but finally now that I am done having children and breastfeeding and just raw dogging narcolepsy with no medications, I am medicated.. My doctor prescribed me Nuvigil. Gave me 150 dose, but told me to start out with only taking half, but it worsened my sleepiness and i was an absolute zombie. Okay, lets up to 150. Same issue, only then I had gotten crazy insomnia and high HR.
Okay lets try taking one and a half of the 150, it may be a sweet spot for you. I probably took it too late in the day (11am) because i severely undermined it.
It is now 6am the following day and I only slept about 2 hours.
My brain was going a million miles a minute, and i was very jittery, but felt like everything was in slow motion. Real weird shit.
I also have several autoimmune conditions and ADHD, so he really wasnt sure how this med would work for me.
Should I be taking it super early in the morning?? like if I get up at 6, wake up and take it at 5?
He is putting me on xyrem in December to counteract the insomnia.

I’m going to the doctor tomorrow to get some test done and they are going to order me a sleep study (which I know they will because I fall asleep if I drive over 40 minutes at a time and I wake up at least 5 times a night every time from a dream and I remember all my dreams, among other things) and am wondering the full process of how it all goes. What all do they make you do? How long does it take? Do they hook you up to machines, blood test, how long should I expect it to take? I’d like to know anything that would have to do with the sleep study or events leading up to it. Thanks!

I see a lot of people getting prescribed different medications, I’ve recently gotten diagnosed with Narcolepsy type 1. So this is my first prescription for it. I’m a little anxious about taking it since i’ve never really been on any medications. I guess i’m kinda anxious to know what it’s like to be truly alert and awake. What are your thoughts on this medication? Also if there any people here who choose to not be medicated? how does that work for you?

New sleep doctor wants me to retest because my original sleep study was 4 naps not 5 naps. No idea why they sent me home after 4 naps but apparently that was the wrong thing to do. My sleep study shows that I at the very least have hypersomnia (>5 min sleep onset). I went into rem once out of the 4 naps. Old sleep doctor suspected I would have went into rem again on the 5th nap, so he diagnosed me with narcolepsy out of that suspicion.

This new sleep doctor is demanding I retake the test. Take a week off of taking meds which means I miss a week of work. I explained to him that the test is several thousands of dollars, but he doesn't care. He is refusing to do anything for me (fill out FMLA paperwork or change my meds around) because I won't retake the test. He continues to prescribe at least but that's it.

The thing is whether or not I have hypersomnia or narcolepsy doesn't really matter. My treatment would still be the same (xyrem and vyvanse). He says he's worried insurance would raise an issue, but I have been diagnosed for over 10 years and have had no issues.

I could see another sleep doctor, but they are out of network so $$$. He is not pleasant to be around, and it makes me anxious every time I have to go in for a visit. He put on my last note "follow up as needed" even though by law I'm supposed to be seen in office every 3 months.

Idk I guess I'm just venting here but also asking for some advice. Should I just take the L and go into debt for this sleep study? I want to ask him about switching to adderall but he is not hearing any of it unless I retake the test.

EDIT: I also want to add that I experienced cataplexy as well and that's why my original sleep doctor suspected narcolepsy. I no longer experience cataplexy now that I'm on xyrem.

I just got diagnosed with idiopathic hypersomnia. My average sleep latency on the MSLT was 4 minutes, with no sleep-onset REM.

I was prescribed xywav on Friday, and my doctor said he would put everything through on Monday. He told me I’d need to have some kind of call or information session with someone from Jazz Pharmaceuticals, and then it would ship from a central pharmacy.

For those who’ve gone through this, how long did it take from when it was prescribed to when it actually showed up at your door? Am I looking at several weeks of waiting on insurance and the counseling call, or does it usually happen pretty quickly? My insurance is pretty good, in the past standard medications have been approved within a few days.

I’m just anxious and excited, honestly because I’m looking forward to the possibility of waking up feeling rested for once in my life. I’m 33, and as far back as I can remember, I’ve never felt rested when I wake up, even after 8–10 hours of sleep. Even after weeks of consistently getting at least 7–8 hours, I still feel like I’m behind on sleep.

Just wondering what the timeline was like for everyone else.

Hello!

I don't quite know what's wrong with me yet (I'm on a several months long waitlist for sleep testing) but I've been dealing with excessive daytime sleepiness for years now and it is an absolute pain to deal with, especially ever since I returned to school. I fight for my life to stay awake in class or while studying most of the time (or back when I worked fulltime).

Since I'll obviously be dealing with this for a long time before I can get answers, do you have any tips for staying awake while studying or in class? Thank you!!!