Need help with medication or who to see next in Queensland Australia.

My sleep doctor is fantastic in FNQ but he has pretty much prescribed all that he can. I would be totally stuffed if it wasn't for him being the first and only doctor to clue into the fact that it was narcolepsy. He's fantastic but I think we ran out of options for prescription.

Tried modafinil, dex, armodafinil. Not touching Ritalin, bad time with that when I was younger.

I cut out a big rant here hahaha but yeah I'm lucky I work solo and the company doesn't care what happens as long as the job is done. Im working alone every single day, feeling destroyed, the job is taking twice as long. Im like an hours drive away or more most days of the week so I'm driving home so late at night. Even if i get back at a reasonable time it's so hard to find the energy to do anything, even if I smash stimulants and energy drinks back to back to back.

🥲

Do i find a doctor that's a narcolepsy expert in my region so they feel comfortable prescribing different medications? Any recommendations? My gp has no idea what narcolepsy even is and doesn't know where to start.

It's interesting for me.Is there someone here from Balkans(specifically Bulgaria )?

i got my sleep and nap study done jan 8th and my follow up isn’t until feb 27th. so im just like sitting here having an awful time,,, my sleep has been super fragmented recently and i don’t know why and im just so tired. i like don’t do anything anymore because im only awake for a few hours at a time. i just kind of feel like im in limbo. sorry if this is incoherent

For anyone who is/was in the clinical trial for one of the orexin agonists— did you need to have cerebral spinal fluid test for hypocretin to confirm N1 in order to be in the clinical trial? Or is a diagnosis of n1 enough?

Thanks!

I’m undiagnosed with anything sleep related. I see a deep specialist tomorrow and have a PSG in March but Man after years of fighting to stay awake all day long I feel like I’m barely holding on to my sanity. I know you all have coped your whole lives with this. How do you hold on to your sanity? How do you keep it together? I just wanna cry and hide in bed all day. My poor daughter is singing me a lullaby because she knows I will likely fall asleep as soon as I’m done with this. She has started begging me not to fall asleep. So now I feel like a shit mom. But I just can’t stop falling asleep. And people want you to function and be social but all I wanna do is sleep. Then when it’s time to sleep I fall asleep but every little thing wakes me up or my dreams are freaking crazy or I think too much in my sleep. It’s depressing. I try to escape into books which is a hobby of mine but they just put me to sleep within 5minutes of reading then I try audiobooks…now those have started lulling me to sleep too. I just want to give up. It makes me not see the point of life if all I will ever be or feel is sleepy no matter how much sleep I get. I’m only truly awake about 3 hours a day. I do take Vyvanse for my ADHD but even that stimulant is wearing off so now I’m compensating with caffeine on top of it. Yet I could still pass out given a few moments of quiet. It makes me o irritable that I feel like I’m going crazy. Does anyone have any words of support? That’s all I need just something to help me finish this never ending day.

I am just really struggling to stay awake as is on a low dose of modafinil (100mg) and my doctor told me to take a few days off a week, but my body literally can’t handle it. I’m constantly in a sleep coma if I’m not attempting to take it even though it doesn’t last for long enough anyways. Is it a big deal to take modafinil everyday?

I have my DSA Needs assessment tomorrow (Disability Student Allowance in the UK) and im just looking for some last-minute advice to get the most out of it as possible.

Let me know what i should try and get to support my N & C and the reasoning to give for why i would need them. like a new laptop, noise cancelling wireless headphones, printer allowance and printer. taxis and anything else useful.

many thanks in advance :) hopefully isnt as bad as PEEP

medicine and caffeine aren’t working today, neither is napping. should I just go with my body, no alarms and hope for the best?

My armodafinl wasn’t able to be refilled because of insurance needing a prior authorization.

Does anyone know if I can use good rx to pay out of pocket? My doctor takes a long time to respond to things and I’m out of my medication. The refill is already in the system, it’s just that “insurance approval required. Your insurance requires your prescriber to obtain insurance approval or send a different prescription.”

TYIA!

So I was rereading the revision of the ICSD-3 and I'm kind of confused about nSOREMPs. Does "sleep onset" mean only the first time you fall asleep that night, or does it refer to any time you wake up and then fall back asleep? For example, I woke up 80+ times (I only remember one time, as the rest were for only like a few seconds) during my PSG and would almost immediately drop into REM after a lot of those awakenings.

I have cataplexy but didn't have any SOREMPs on my MSLT (which was botched), so I was diagnosed with IH. A narcolepsy diagnosis has access to different meds here, so I really need a narcolepsy diagnosis for any small chance at feeling better. My sleep doc brushes off my cataplexy and refuses to retest me, so I was wondering if this new criteria could help me.

EDIT: I thought I should clarify that I'm from Japan.

Was thinking of making a group chat xx

I would love to regain some flexibility and/or muscle strength again. I haven’t been very active since my symptoms began five years ago but I’ve been diagnosed nearly 6 months now and there’s no excuse for me anymore and I would love to build up some muscle because I’m quite skinny.

Do any of you have low intensity workout recommendations? Palates, stretches, cardio, anything. I’d love to get back in order again.

Having narcolepsy in a world that never slows down is exhausting. It feels like everything is built for people who are always “on,” while I’m stuck in this constant cycle of fatigue. Even simple things, like going out for dinner or attending a family gathering, can feel overwhelming.

The hardest part is the FOMO. I want to be there for all the moments birthdays, celebrations, random nights out but my body doesn’t always allow it. When I do push myself to go, I often feel like I’m not really there, fighting to stay awake or focus on conversations through the haze of brain fog.

Sometimes, I wonder if people think I’m boring or uninterested because I can’t keep up. But it’s not that I don’t care but I care so much. I just don’t always have the energy to show it the way I want to.

To anyone out there struggling to balance narcolepsy and a social life, how do you make it work? How do you stay connected without burning yourself out?

I’m not asking anyone to diagnose me, I’m currently waiting on my PSG and MSLT results actually. But I am curious if anyone who is diagnosed has experienced this. Occasionally, almost as soon as I lay down for bed and I’m thinking and my mind is wandering, I feel fully awake but I will sometimes picture myself doing something and then I actually do it. I don’t try to but it just like happens, like sometimes I kick or nod my head or I’ll move my thumbs like I’m typing on my phone. It’s so weird because I thought I was awake but then I realize upon this sudden movement that I was dreaming.

Good morning, my fellow sufferers! I would like to share a bit of my experience thus far in managing my day to day life. I am also hoping to get some feedback on anything I could possibly do to improve my day to day functioning.

I was diagnosed two years ago after having an attack behind the wheel, drifting aimlessly through the morning traffic, and totaling my second car... I totaled my first car because of the same thing... Needless to say, my driving privileges have been stripped from me. That was the scariest point of my life.

I'm a 31 year old guy with an awesome desk job. Helping run Client Services and Community Outreach for a non-profit specializing in Transitional Living/Sober Living and Substance Abuse/Mental Health Treatment.

My bosses are so understanding. I'm very lucky in that regard.

I'm prescribed 400mg of modafinil a day. I take 200mg first thing around 7am. Take my second 200mg around 1pm... Red Bull helps to fill the gaps in between lol.

My days are generally okay. Except for around 8:30am to 9:30am, after I eat breakfast at my desk. Then 1:30pm to 2:30am, after I eat lunch... Eating any decently portioned meal seems to trigger my bouts of extreme exhaustion and attacks.

I get home around 5:30pm, nibble on something for dinner, then IMMEDIATELY CRASH and sleep for usually 2 straight hours.

Now... Nighttime is when stuff gets real for me folks... I'll fall asleep around 9 or 10pm. Then I'm up, around every 45 minutes, all night, until I get ready for work at 5:30a... I find I fall asleep sitting up in bed, usually never quite making it to full "laying down" position.

LIST OF NIGHT THINGS I DO:

-I have the tendency to suddenly "jump out of bed onto the floor" like a fish flops around on land when it's out of water.

-I tend to "judo kick" my side table and knock everything over.

I've fallen asleep with my large obnoxious Stanley cup in my hand, sitting up in bed. Then just suddenly threw that thing hard as hell at my box fan upon awakening.

-I yell the strangest things at night. Such as:

"Those are my croutons Satan, get your own caesar fucking salad",

"It's not in the damn guidelines",

"I know that's your fucking shed",

"You didn't even read the fucking form first you asshole",

"Go shit yourself".

-Sleep paralysis is a regular occasion for me. Especially upon awakening. I'm laying there, needing to go pee badly, and I can't do anything but think to myself... "JUST WIGGLE YOUR BIG TOE" like in the movie Kill Bill.

-I get vivid hallucinations upon awakening. Mostly of like demonic looking creatures or the occasional good looking human-like entity with fangs and black eyes. Just standing over me with the most evil smile.

-I get headaches alot when it's time to get up and get ready for work. I dunno

I also find my cataplexy is worse at night. Always slumping over, dropping everything in my hands. Collapsing to my bedroom floor because my own thoughts triggered extreme happiness or extreme anger or anxiety. Thank goodness my bedroom floor is carpeted... I cannot count how many times I've been laying in bed on my phone, find something hilarious, and then I hit myself in the face with my phone as I drop it.

At one point, my sleep attacks got so bad. I was administered narcan by a peace officer because I fell asleep on a public park bench... My friends had a t-shirt made, just for me, that said, "I'm chronically sleepy, don't narcan me bro" on the front. On the back, it had a picture of a Snorlax. It was the most thoughtful gift I had ever received lol!

So.... Anyways. Needless to say. I've accepted a lot of these things, over time, as facts of life now. Yeah, I go around all day, every day feeling like I haven't slept in 2 or 3 days but I'll survive.

I have a great group of people in my personal life and in my professional life that makes my day to day suffering a million times easier. That's all that matters.

I got bumped up to 250 armifidol fro. 150 after telling my Dr it wasn't working (still suffered just as many daytime sleep attacks. I take it at 6 am . When Night comes my brain will not shut off without taking melatonin or staying up till 2 to 3 am. I can do this 3 hours of sleep at night crap. I'm super tempted to stop taking it. But still holding out hope it's just a phase. Any one else got suggestions?

I saw a lot of posts saying Xywav tastes horrible so I was scared but so far it's had no taste for me. Anyone else experience this?

All last year, I’d have cataplexy attacks around twice a day, and I’ve used a wheelchair so I didn’t need to be carried. My doctors have all advised against me driving, and I could barely do anything on my own (even stand), so I got disability. But a month or two ago, right as I finally got my official diagnosis and was about to receive my medication, my cataplexy symptoms all but vanished; my limbs become heavy and I get brain fog, so I walk with a cane, but it’s nothing close to what I was experiencing before.

Has this happened to anyone else?? I’m just so confused. I was just getting used to the severity of the attacks. Are they going to come back? Will my doctors not believe me anymore if I tell them? What the fuck is going on???

tl;dr at the end.

I'm 30F. I was diagnosed with narcolepsy type 1 (with cataplexy, triggered by intense laughter) 12 years ago. I find that the only times that I can say that it seriously negatively affects my daily life is when I've paid to be somewhere, like a movie theater or a convention. I'm on Vyvanse (40mg) for ADHD (inattentive type). It's also greatly helped my narcolepsy symptoms, but I still fall asleep in inappropriate spaces.

I'm going to a sci-fi convention in just under two weeks, and I've learned from past conventions that I can't sit through panels (person on stage talking to the audience) without falling asleep. I see some panels listed that I might be interested in, but I fall asleep regardless of my interest level if there's little to no audience engagement, so I might avoid panels altogether.

I can't watch movies in theaters with reclining seats, even if the movie is one I badly want to see, and the sound is blasting my eardrums. I fall asleep despite fighting so hard to stay awake. I also can't sit and read a book quietly because I fall asleep or lose control of my eye movements from sudden, inexplicable exhaustion.

I feel like I miss out on a lot in life because I'm always falling asleep regardless of how much sleep I get at night. It really feels like I'm alone in this - I look around and everyone else is so awake and alert. It's embarrassing falling asleep in public spaces, and I feel like everyone thinks that I'm so disrespectful for it even though it's something that I can't help.

What are some (non-med) things that I can do to keep myself awake and alert (in addition to the meds I'm taking) so I dont have to miss out? Caffeine doesn't have much of an effect on me and I have an arrhythmia, so I can't have a lot of (are they called this?) "uppers".

I do not currently have a sleep specialist. They wanted to do another sleep study, but I live in rural MN and the nearest sleep center is 3 hours away and I have no way of getting there. The doctor won't talk to me until I've had this third sleep study, so I'd like advice from other narcoleptics.

Thank you for your time.

tl;dr - I keep falling asleep in places that I pay to be at & that I want to be at. I'm on Vyvanse 40mg and have an arrhythmia. How do I stay awake and alert without using more medicine or chemicals?

Hello all. I am a 48f with N1. I have to have a colonoscopy 😖 next week and cannot take Xywav 24 hours prior and after the procedure. It is scheduled in the middle of the week, so I am wondering if anyone has experience with this? Should I just assume I am taking 3 days off or will ambien atleast prevent me from insomnia without Xywav

I was on 10mg of adderall for a while, and taking 300mg of caffeine. Recently I've been increasing my adderall dosage and now I'm on 25mg ER and 5-10mg IR. But I've actually been getting more sleepy during the day, it's not lasting longer, and my sleeping has increased. I used to be okay with 10hrs of sleep but now I keep sleeping 14+ hrs until someone physically wakes me up. I don't know if it's the increase in adderall that's causing this or if it's getting worse in general. Has anyone also experienced this? I was reluctant to try oxybates but now it's looking like I have to.

While I was at the store, I came across a supplement called Maizinol, which claims to increase deep sleep. I researched and found that a study showed " Participants who received UP165 showed a statistically significant and dose-correlated reduction in salivary cortisol (up to 36%); an increase in deep sleep time (up to 30 minutes); increased total sleep time (up to 10%); an improvement in sleep quality (up to 49%), and an enhanced POMS (36–58%). Participants in the UP165 group showed a sevenfold increase in deep sleep time and a 10-fold increase in PSQI sleep quality improvement compared to placebo. Collectively, UP165 is a safe nutritional supplement clinically proven for a 24-hour support with better quality and efficiency of sleep at night and an improved mood state and overall well-being during the day. " Studies on this seem recent, but there are a couple.

It seems like it would be great for narcolepsy. I am currently on 30mg of adderall and sleeping 14+ hours a day, so something has to change. I am going to start trying this supplement, and if it doesn't work I'll try oxybates. No amount of sleep is restorative for me, so I'm really hoping this works. Has anyone else with N tried this supplement?

Just kinda feel frustrated and depressed right now. I stopped the medications I was told to quit (need to stop them for 2 weeks before the sleep study) and it just really sucks.

Not sure if I’m using this word correctly but I feel like I’m “spiraling.” I’m starting to feel more and more alone by the day, more and more depressed and hopeless, which is something I feel like I haven’t felt this strongly in a long time. I’ve been pretty happy! I’d get sad for no reason every once in a while but it’d pass pretty quick.. now it won’t go away.

I guess I’m just ranting a little about having to stop my medication for 2 weeks. Can’t wait to be able to go back on them, really feels like they just help me pull my life together.

So my doctor wants me to dial back on the Adderall, which I'm taking twice a day, down to one eventually. In the meantime while waiting for my Lumryz prescription he wants to tritate me up from my 4.5 Xywav dose to 6 before my sleep study on March 9. So far I was up to 5 and it felt manageable so I thought I could go straight up to 6 last night.

BIG MISTAKE. I woke up and the room was spinning and I was lucky enough to find a plastic bag. I puked for the first half hour of consciousness and it fucking burned.

So yeah.... Don't do what I did. Please titrate slowly lol.

I recently went up to 4g on Xywav for both doses, and I’m starting to feel mental clarity when I wake up and just lighter overall? Is that something ya’ll experienced, titrating up?

Oohf I’ve had a rough week! Hope everyone is doing better than I am and can enjoy their weekend with the best health possible. Cheers!

When I'm procrastinating and doomscrolling, I keep telling myself I need to get up, but it feels like my legs just can't manage it. I know that my legs are fully capable of getting off the couch, but it feels like it would take every ounce of energy in my body. The voice of my mother is in the back of my mind saying I'm just lazy. But this is normal (for PWN), right?

My psychiatric nurse practitioner and I recently discussed having me go back on a stimulant drug to treat my ADHD. But, she’s not a doctor, so she’ll need someone else in her clinic who can prescribe controlled substances to send it in for me. She asked that I get a letter from my sleep specialist stating that he’s okay with me taking a stimulant in addition to Lumryz (I have Type-1 Narcolepsy), because she said that the doctor in her clinic is going to see that I’m on another controlled substance, not recognize it, and more than likely automatically refuse to prescribe the stimulant because of it.

But when I talked to my sleep specialist (who previously had no issues with me being on a wakefulness promoting medication to treat my narcolepsy, he even prescribed them) he said that I’d have to come off of the Lumryz if I wanted to start a stimulant and offered no further explanation. (I understand that there are some differences between the wakefulness promoters and stimulants, but both can be used to treat narcolepsy.) Has anyone else had any issues getting ADHD meds while taking sodium oxybate?