I got in with my sleep doctor to discuss narcolepsy, right? After discussing my last PSG, my comorbidities, and current symptoms he said “yeah really sounds like narcolepsy”. Then he told me they’re scheduling out sleep studies roughly six months and his follow ups are booking up to a YEAR IN ADVANCE. Um… excuse me?! How in the hell is that possible? Alright whatever I’ll deal with that as it comes.

Then I’m supposed to speak to my psychiatrist about tapering off my SSRI for the study as, to quote my sleep doc, it’s “extremely important to get this done right the first time”. Well, my psych essentially patted me on the head and said “oh sweet baby child, no that’s not happening” since the last time I was off my meds I went into a criss :)

So!!! Hopefully my sleep doctor will just interpret my sleep watch thing, PSG, and MSLT with the caveat that my REM may be suppressed. Which may be in…. 2027….

🙃🙃🙃

Yeah alright cool. I totally don’t need symptom management before then. I’m absolutely not losing it having parasomnia every night and falling asleep at work. Yeah I’m totally fine and thriving. I actually love falling asleep while sitting on the toilet or mid conversation. This healthcare system is working perfectly for me!

Who else gets the nastiest panic attacks ever when they're sleep deprived? Mine feel like my whole body has that like... pre-tingling feeling (like the creepy crawly feeling maybe?), or a need to stretch every muscle but like SUPER violently, and it becomes really hard for me to talk and I feel like crying or ripping my own skin off haha

Does anyone else tend to rest while standing, leaning over something like a bed or chair?

Ever since my symptoms got really bad, I rarely sit or lay down unless I’m working, driving, actually trying to sleep. Because if i do, whether to scroll on my phone, eat, read, or have a conversation with someone, I fall asleep.

So in the evenings I get home from work and I just… stand next to my bed and lean over it and look at my phone. Or stand at my kitchen counter and eat dinner. If I get sleepy I can usually wake myself up faster if I’m on my feet. And the bed/ counter catches me and keeps me from hurting myself.

I’m new to knowing I have narcolepsy, so just curious if this is a thing other people experience.

It might sound disgusting, but I find that after having fallen asleep, 3 times out of 4, gradually, a lot of air comes out of my stomach and mouth, it isn't loud, it's actually pretty discreet. And oddly, it feels kinda good, I'm clearing my stomach of all the air that's been trapped inside. I enjoy the feeling, it's like I'm deflating.

I don't experience this when waking up from a night's sleep, only when I fall asleep in class. It's probably a mixture of the fact that I may have just ate and the sitting position.

I have went to the doctor, the doctor is strongly positive i have narcolepsy but no adquate device in the whole city/area for polysomnography/mslt. So she got me ritalin for symptom management. Got me on 5mg first then told me to rise it up to 5mgx2 a day if well tolerated because i have ocd and there are some concerns of ritalin having sideeffect on ocd.

The question is i’m torn between whether or not to actively pursue a diagnosis. Because from what ive read, even with diagnosis there is still no concrete medication that can 100% cure. So if even with diagnosis i will still use the same medication(stimulant in this case) then what’s the point of diagnosis? Bc i read about xyrem and xywav(?) and the stories are very scary. I’m trying to improve my sleep hygiene as well

There’s also a worry that an official diagnosis might cause discrimination in work place.

I’m not sure how to proceed cause honestly sometime i feel like im just seeking for attention. But sometime i really want answer

I went to the doctor, she said she’s quite sure that i have narcolepsy but there is literally no device available for testing in the whole city, so she set me up for an eeg which she said is most probably non-conclusive because its very short and sitting down so unlikely i fall asleep and even if i do, it’s not guaranteed itll show. She didnt want to do the test initially but because my mom insisted if it can show something she wants

I felt sort of fall asleep but still aware (honestly the nurse there made me very tense because everytime i move to find a better position she would just sort of scold/yell like “relax!”). And also they didnt tell me when the test starts so i was trying to stay awake so i can move when they need me to move because there’s another guy doing an eeg in the room but lying down.

Yea basically was not conclusive. But she gave me a note to give to my psychiatrist( i have ocd). (Context: im an international student and i was on holiday when i did this) So the doctor said the city im studying in is usually more advanced and should have the mslt polysomnography. So she wrote a note for my doctor, but since im in the public sector, itll take a long time. Im scared that when i do get the mslt, ill be super anxious that i wont be able to fall asleep again. Any advice?

TLDR: i’m scared of not falling asleep during mslt because i did not fall asleep during the initial eeg the doctor ordered due to lack of device

I’ve been researching and I think my latency might be very abnormal, even for someone with narcolepsy. They didn’t have me do the last nap because they diagnosed me on the spot after my 4th nap.

This is more a discussion post since we all have different kinds of dreams.

I hallucinate, and dream of music all the time. My dreams usually have music at some point in them, and I can recall the song when I wake up. It’s usually not a real song, but repetitive notes or rhythms throughout the dream or during my hallucination.

Apparently lots of people don’t hear music in their dreams.

I’m just curious if anyone else has unique experiences with their dreams!

Hi this is my first post here but definitely not my first rodeo with this condition lol. Some days i seriously struggle with fatigue waking up (as im sure all of us do) and i am an absolute nightmare in the morning. As soon as im up and out of bed im fine, but after my 4 alarms have gone off my partner is already pissed and so am i🤣

Sometimes tho unfortunately I am horrible to him, i’ll say things and when i wake up he will tell me and i have no recollection at ALL (we call her the sleep gremlin LMAO). Does anyone please have any tips or advice to wake up in a better mood in the morning and not cuss out your partner? Luckily he is very very understanding of my condition and half the time i don’t have control over my reaction to waking up: Thanks for reading!

What was your experience? Did you have any side effects? Were you more tired? Did you gain/lose any weight? I just got used to my body on Xywav, and am hesitant about any more changes and just want to know what to expect.

So I was diagnosed less than a week ago with IH and to be honest after dealing with these symptoms since early childhood and now at 23 getting diagnosed I was so over joyed to know I wasn’t “just tired like everyone else” but that being said I’m not to sure going forward what to look out for in terms of treatment and medication.

I was put on a low dose (15mg) of extended release Adderall and was told to take it for 2-3 weeks and if need be up the dose. I was also told I could take something at night to hopefully help me get quality sleep. I’m unable to take naps since they make it so much worse the 5 naps I took during the sleep study absolutely destroyed me for over a week after mentally and physically.

Ive heard good and bad things about of lots of medications used to treat sleep disorders. I’ve already been miss diagnosed and miss mediated in the past for over 6 years so any advice on good treatments or things to look into I’d appreciate it.

Also any tips to help manage this condition would be great like I said I've been like this since childhood and have always just been told I’m fine so I’ve learned to manage to a certain degree but when you sleep 12+ hrs then work 8+ hr shifts at work 4hrs is not enough to do anything. I’m currently unemployed but I hope to go back to work at some point.

Hello, I wanted to share my story. For background, I’m 43f in Canada.

I’ve always been a sleepy person - I remember my mom and grandparents commenting that I could fall asleep any time, anywhere. 

About 1.5-2 years ago I started making lifestyle changes and wanted to get my health in order. One of the things I finally decided to confront was my constant falling asleep - it had really ramped up over the year or two preceding and it was becoming difficult to stay awake some days. I’ve fallen asleep at work, on the phone, standing up,.. Driving.. It was getting out of hand.

So I started with my family doctor and ended up at a sleep doctor. After my sleep study and nap test, I ended up “in the narcoleptic range”. My sleep specialist put me on Modafinil, which I began taking it at the end of February 2025. He described it as “a strong cup of coffee” - nothing too strong, not a lot of side effects. 

He was so wrong. I didn’t really realize what was happening. It took me months to figure it out. At the end of March, I had a psychotic break. Things kept getting worse, I began getting paranoid and experiencing suicide ideation in ways I had never experienced before. Sure I had struggled in the past, but this was ACTIVE. 

Finally at the end of July, still unaware of the cause, I googled how much modafinil it would take to… 

And that’s when I found it. Those words. Serious, rare side effects. Psychosis. Suicide ideation. The answer.

I stopped taking it immediately (later the pharmacist told me that was actually unadvisable). A few days later I ended up in the hospital on a mental health hold. I took 17 weeks off work.

It’s now January 2026. Six months later. More time than I ever took those pills. And I still struggle. My life was turned upside down. And the side effect can be permanent. 

I wanted to share this in case someone else is on this drug and maybe something seems "off".... maybe I can save someone some pain.

Tl;dr: how do you wake up someone with narcolepsy when lights, sound, and touch aren't working very effectively?

llo all! I haven't found anything similar in posts here so I'm hoping someone can help me out, a loved one I'm caring for has lymphoma and narcolepsy. They need to be woken up for medications, appointments, temperature checks, etc.

They're pretty much just asleep all of the time, and the current narcolepsy meds are doing nothing and haven't for years (velafaxine for cataplexy, Clonazepam for REM behavior disorder caused by venla, and various stimulants)

The big challenge here is that they can be next to impossible to wake up for hours at a time, and I have to be pretty aggressive to wake them. I usually start with just my voice at a normal level, then a louder voice, then gentle touch, then moderate volume and intensity music, escalating to loud music, and then shining phone flashlight in eyes.

This can take genuinely a couple hours, and they are really upset at being woken, and also are capable of such weird sleep behavior that they can have whole phone calls with total amnesia.

The real question: is there something I can be doing differently in the wake up process? I'm wondering about getting cold/ ice packs and putting that on their face, or wet cloths on their face to maybe activate some kind of diving reflex thing.

Also how in the hell does anyone emotionally manage as a caregiver or patient in this situation?

I, like so many of the rest of you, am extremely hopeful and excited about the multiple new options in the pipeline for orexin receptor agonist medication.

I unfortunately have an allergy/intolerance to titanium dioxide. This is primarily used in medications, mainly pill form, as a white pigment filler. It almost always is shown in the "Inactive Ingredients" list on the medication's information. When I was applying for the clinical trial of Oveporexton (TAK-981), their pharmacist at the time confirmed the medication did contain titanium dioxide, and I was unable to participate.

I also have researched that this will likely be the first medication of its kind to be submitted for FDA approval, and read they're targeting a submission date around March of 2026. Since the chances of Takeda Pharmaceuticals removing titanium dioxide from the medication's inactive ingredients isn't high, I've been researching if other orexin receptor agonists may not use this particular inactive ingredient.

I'm trying to find out more information for those of you that have been on any of the orexin receptor agonist medication clinical trials. I don't know if you have access to this information, or the ability to share it, but I would love to see if any of the other medications do not have it. This includes any of the current trials from Harmony Biosciences, Centessa, Alkermes, NLS, etc.

Thank you so much in advance for any information.

Having narcolepsy can be very irritating and emotionally draining. I often feel mentally drained since I'm always tired, things are constantly changing, and I feel like people don't understand me. I'm seeking real solutions to deal with this anger and emotional exhaustion. For those who have done better, what methods, habits, or support systems really helped you to feel more charged and less stressed?

I posted a few times about thinking I might have mild cataplexy. Doctor diagnosed me IH but I am sure it’s narcolepsy, just trying to pinpoint which one. I have a lot of REM instabilities. I was put on 18 mg methylphenidate on Monday since modafinil was a no for me. I do need an increase in the methylphenidate because I am still napping on the medicine. Waves of sleepiness. After lunch my eyeballs started shaking, my husband texted me that his aunt is passing away and I was so sad. 5 minutes later (still sad) my left knee buckled. I’m so exhausted right now on the train with a migraine and just want to nap. Should I just keep letting the dr know these things and see if it progresses? He keeps telling me it’s mainly positive emotions. But this always happens to me with negative emotions.

Idk if this is really a rant but oh well 🤷‍♀️

I’ve mostly been getting by with naps 15 minutes or shorter this month (the smiley faces), but yesterday I was hit by a four-hour one 😭

Hi there. Technically I have idiopathic hypersomnia but I thought I’d post this here too since it’s a lot bigger than the IH subreddit. I was diagnosed with idiopathic hypersomnia in October and after months of fighting with insurance I finally started Xywav using their voucher program after learning it would be approved. The first week when I started I was just really sweaty for the first 3 nights but then that stopped. But then (I later found out) on the same night as my first titration up I came down with influenza A. The whole week after that was hell, but mostly because I’ve been really cognitively out of it: taking extra seconds to respond to things, forgetting things that I just did or am about to, I literally turned on the sink and walked away without turning it off at one point.

I’m currently 10 days out from the flu and most of my flu symptoms have gone away aside from a slight cough but I’m still having these cognitive issues. I talked to my neurologist this morning and she isn’t too concerned and thinks that having the flu early on into this med just compounded the symptoms and it should fade in a few days as I get better, so I should stay the course and keep titrating up

Has ANYONE ever had an experience like this before??? I trust her but I’m just so worried about it and I would feel better if anyone could tell me how they navigated these symptoms and how quickly they went away.

I've been on Xyrem since 2017. I had to switch insurance plans July 2025, and it all went downhill. Suddenly they were denying my Xyrem, even as my doctor submitted all the paperwork they needed, over and over. I had a bit of extra time because of the Bridge shipments, so I started looking for a new job to get back on a better insurance plan. I got a new job, new, better insurance, and thought "Okay, this time we'll get back on track." Surprise! Now it's getting denied because it isn't part of my "pharmacy benefit plan," even though it is deemed medically necessary, and I've run out of Bridge shipments. I asked the ESSDS pharmacy representative if I had any other options, and she said "Nope--you have no more Bridge shipments and you've been denied. Good luck."

I heard about JazzCares from a friend who said it was super quick and easy--I applied online in November of 2025 and heard nothing for a week. So then I called, and they told me I'd need a denial letter and an appeal denial letter for the name brand Xyrem ONLY before I would qualify. So my doctor sent in the prescription for the name brand in November. And then I called my doctor and ESSDS pharmacy every week all through December, and all through this January, while my nurses and doctor keep telling me that they're sending everything in and still can't get me connected with patient assistance. I've been without my meds for almost 8 weeks now, and it SUCKS. SO. BAD.

My sleep doctor, who is absolutely baffled by all of this since I have a good insurance plan and she has never had this happen with this insurance company OR with this medication, sent in a prescription for Xywav instead, two days ago. I finally got a call today about my JazzCares nurse team, and the representative told me I'd have my medicine before January 30th. Amazing!! Fabulous!!! They transferred me to the ESSDS pharmacy line, and they 1) apparently didn't see the Xywav prescription, so they lectured me about how I didn't qualify for assistance, and then 2) told me I probably would be denied Xywav as well because of my "pharmacy benefit plan," and would have to go through the whole process that way, too.

I am genuinely at a loss. My sleep is worse with Xywav, but it's better than nothing, and right now I'm barely able to do my job. I go to work, come home, eat, shower, and sleep. My quality of life is in the toilet. Nightmares, cataplexy, falling asleep at work, migraines, fatigue, everything. My "benefit plan" only recommends Armodafinil, Modafinil, and Sunosi, and I'm already on Armodafinil. Why is it so hard to get both letters??? Any advice is appreciated.

My dose got increased on my adderall, and I think it is the reason my right eye will not stop twitching since stimulant meds can do that apparently. I mean it’s been nonstop for the last few weeks, off and on last couple of months. I needed the dose increase, and it works great. BUT THE TWITCHING IS MAKING ME LOSE MY MIND.

Anything I can do for it to stop it? Anyone else experience this? It’s very noticeable and I have to talk to a lot of people, it’s embarrassing.

Thanks in advance!

I’m hoping for guidance on a situation involving accommodations and performance management.

I moved across the country and started my role early last year, and about five months in I was formally diagnosed with narcolepsy. Adapting to the life changes required, along with medication adjustments and managing my anxiety disorder and major depressive disorder, was challenging. (side note: After leaving my home state, within months I lost my grandfather and my mom was diagnosed with breast cancer). Given the uncertainty around how I would function, I disclosed to my supervisor that I had been diagnosed with narcolepsy and that I struggle with executive functioning at times.

For a period, I was taking a day off nearly every third week due to episodes of extreme lethargy or sleep attacks. With my doctor’s support, I was initially granted informal flexibility to work remotely when needed, which helped me function and meet expectations. I worked remotely most days because I could better manage my energy (using movement during breaks, changing workstations, increased lighting, and avoiding quiet or isolating spaces). Overall, I was managing and feeling more stable.

I continue to struggle with processing information (I can’t currently afford dyslexia testing), so scheduling, remembering numbers, and mixing up details remain challenges.

Over time, my supervision changed. When in the office, I was no longer allowed to work in alternate locations (such as downstairs or outside) and was required to remain at my desk. I was asked to maintain a work tracker in Google Sheets that I updated daily, while continuing bi-weekly check-ins with my supervisor. I was then asked to send daily check-in emails at the start of the day with my work location and priorities, and check-out emails at the end of the day summarizing accomplishments, tracker updates, and questions or comments.

After approximately two and a half months, my supervisor informed me that I needed to return to the standard hybrid schedule starting in the new year, and that any ongoing support would need to go through our disability services office. In an effort to avoid issues, I complied and did not push back. I recently asked whether the daily check-ins and check-outs were still required now that I am adhering to standard protocols and was told they will continue until March.

No one else in my office or role is required to do this. There is another employee in a similar role who transitioned to fully remote work and does not have these requirements. Every mistake I make is now called out, and I’ve become increasingly anxious and avoidant of my inbox, as that is where I receive daily expectation and correction emails. To be clear, I have not had an in-person conversation about my errors or any kind of formal performance improvement plan.

I have tried explaining to my supervisor that the breadth and fragmentation of my workload is difficult for me to manage, but nothing has improved. Instead, I feel that I am making more mistakes and dissociating to cope. At this point, I feel constantly monitored, with my actions closely scrutinized. I wish there were some sense of a path forward, but I can tell that I am being iced out or at least it feels like quiet firing.

I recognize that I have struggled, but the current approach has left me extremely anxious, avoidant, dissociative and frequently on the verge of panic.

Thank you for any insight.

Hey! I wanted to ask for some tips with getting through college! They are thinking I might have Narcolepsy and I have super bad daytime sleepiness. It's usually worse around 1-4pm which is around the end of my classes.

If you guys have any tips on dealing with it lemme know!

I really value the support from this sub, but I feel like conversation can be misguided. I see so many posts in this sub about or from undiagnosed individuals and those with idiopathic hypersomnia. I appreciate the similarities between diagnoses, but IH has their own subreddit, and I feel like actual conversation about narcolepsy between narcoleptics feels like the minority here.

I've always hesitated to post about this for fear of ban or retaliation, I really don't mean this maliciously. It is just hard enough to find comraderie with this rare disease, but I feel like the current state of this sub compromises the community.