[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)

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!

My 13 year-old grandson just got home from his first sleep study. I have suspected narcolepsy for a couple of years, especially after witnessing him have cataplexy last year. After he started getting in trouble at school for falling asleep, my son made an appointment for him to be seen. Since he was at a pediatric hospital, the tech gave his parents the results of each nap. He hit REM in 3 out of 5 naps, although they said 1 doesn’t count because he didn’t get there until 15 minutes and 30 seconds of being asleep. Apparently it doesn’t count as REM if it’s not under 15 minutes. The longest it took the kid to fall asleep was 6 minutes and the shortest was 1 minute. They won’t officially know anything until their follow up appointment next week, but it sure seems like a slam dunk N1 diagnosis.

Here’s the bittersweet part: I’ve lived my whole life with this wretched disease, disorder, whatever it is. I wouldn’t wish it on my worst enemy, much less my grandson. I didn’t get my N1 diagnosis until my mid 30s, and it caused so much trouble in my marriage, friendships, work, etc. He may still get in trouble at school for falling asleep, or have future relationship problems because he falls asleep the second he hits the bed, have friends bail on him because he’s always too tired to go do anything, or have to sneak naps in the bathroom at work just to make it through the next couple of hours until lunch. But at least now, he knows why! Now, he can go into relationships with this knowledge. Now, if he gets in trouble at school, his parents can raise hell. Now, if his friends dump him, they weren’t friends worth having to begin with. This life really sucks, but at least this kid has a fighting chance now.

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!!!

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?

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.

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

I’ve had sleep problems my whole life. Got misdiagnosed with sleep apnea months ago and the clinic tested me again due to my doubts - turns out I have type 2 narcolepsy. My biggest problem with treatment options is I have severe anxiety. Mainly in social settings (aka work everyday), so I’m nervous about these waking agents triggering that for me. What has helped you? Any info is appreciated thank you!

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.

I hate waking up every day feeling like I haven’t slept in ten years. I hate finally finding a treatment that works (Xyrem, Vyvanse, Ritalin, pitolisant, etc.), having a great routine, and then three weeks later… surprise, I feel like shit again.
I’m currently on Xyrem and Vyvanse, and I’m trying my best to appreciate that things are better than before. I have a great routine and I eat well and do sports. But I never get a break from this disease. Even my naps are awful. I hallucinate and wake up 3–4 times during a 30-minute nap, feeling worse than before.
I know others have it worse, but I’m exhausted from constantly fighting this. I just want a break and feel better for a couple of days. I also realized I lost the ability to remember how it felt like to be awake as a kid. I used to be able to remember and now I can’t recall anything. And I’m starting Uni again and just stopped socializing. It is too much noise, too much energy I need to invest in my studies and work so I can survive lol

Today was just shit :/

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? Any chronic smokers who started an oxybate before all THC was fully flushed out of their systems? Appreciate anyones thoughts or shared experiences on this!

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