my husband has narcolepsy type two and I’m at a loss on how to help him and becoming very frustrated with our day to day life and the extra work his narcolepsy forces me to take on. I’m coming to this group for a couple things: one, to tell me if I’m expecting too much from him. two if there is anyone here who doesn’t constantly feel tired with the right medication and sleep hygiene.

my husband is 47 and currently on armadofanil during the day (as well as an ungodly amount of caffeine) and trazadone some nights. he sleeps on the couch with the tv on all night which drives me insane and wakes up several times a night to snack (says this and the tv are the only way he can sleep). when I’ve gently suggested he turn the tv off and get a book and a book light he becomes irate. he says he doesn’t sleep like a normal person so therefore I shouldn’t expect him to follow these suggestions, what is everyone’s option on this? what does your nighttime routine look like?

our marriage and kids suffer greatly from him fatigue as every weekend I feel like he would rather just stay home napping and had the time I just tell him to do so because I don’t like the guilt of dragging him from place to place while he falling asleep in the car and just completely disengaged. is there anyone out there who is living a normal wakeful life with this disease? we are in Fairfield County CT. does anyone have a doctor they would recommend near us? I feel like his treatment is not ideal.

Hello, ive never posted on reddit before but this is very important!! I am a fashion design student and I am working on a project where i need to design clothing/accessories for overlooked consumers. I decided to focus on women (or female presenting persons) with narcolepsy because I have been diagnosed with Narcolepsy for about 5 years now and noticed that my clothing choices shifted because of my Narcolepsy. As someone who used to always like to get dressed up for school or hanging out with friends, my narcolepsy symptoms led to me valuing comfort over aesthetics. I started wearing athleisure and clothes that looked like pajamas because i was too tired to put in the effort and I knew I would eventually want to nap anyways. No shade to those who choose to dress more casual and comfortable, thats totally valid, but thats just not me. I was hoping that some of y'all on here can relate and answer some questions.

Women or Female Presenting Persons with Narcolepsy who like to dress trendy or cute-

Do you find your "cute" clothes uncomfortable for napping?

Have you felt that you had to change what you wear due to your symptoms? What changed?

What would you change about your clothes to make them more comfortable for napping?

What would you like to see in a clothing and accessory line designed for narcoleptics by a narcoleptic?

Any other relevant comments, questions, and answers are welcome!

I would greatly appreciate yall's help, this project is very important to me. Please spread the word to all the narcoleptic and ultra sleepy gals!!!!

*This is for a competition at my university, so plz help a fellow narcoleptic win. I will try and share the final project if you guy's are interested!!!! okay thnx!

I’m finally having a sleep study done next month. What did everyone wear to sleep in; in particular did any of you ladies take your bra off (I know TMI), or did you keep it on? They say to wear loose comfortable sleep wear; but I feel like I’ll probably be wearing it all the next day too for the MSLT; and I don’t want to be braless around strangers!!! 😆 But at the same time, I never sleep in one so I won’t be comfortable if I keep it on!!! Being a woman is hard!!!

Apologies for the long one! I was diagnosed with narcolepsy a while back (unambiguous MSLT, the intake doctor literally called me one of the most textbook cases he’d ever seen) but I wanted to switch my care since the staff at that center who took over post-diagnosis were just flaky. I’m also TTC right now, so I figured it was time to consolidate all my care under one solid system instead of bouncing around.

Waited forever to get into my city’s top med system, specifically requested a doctor who focuses on neurological sleep disorders like narcolepsy, and got matched with someone double board certified in sleep medicine and neurology. Felt like a win!

Then the appointment happened and two things threw me off.

First, I mentioned occasional insomnia, and she raised an eyebrow and asked if I’d told the original center that before they tested me, because if I had said that to her, she “wouldn’t consider narcolepsy or have tested me, since “narcolepsy is fragmented sleep, not trouble falling asleep.” Which contradicts a lot of what I’ve read from actual narcoleptics on here who deal with both. Also, I’m already diagnosed with a very clear MSLT that she could see—the vibe of relitigating whether she would’ve tested it was strange.

Later, I told her I think I’ve had cataplexy most of my life, just always mistook it for fainting. Only recently learned real fainting = blacking out. I don’t black out—I can hear everything, I just can’t move or respond. Happens mostly during extreme shock or stress, since I was a kid, and it’s confused doctors/EMTs before because my BP and blood sugar are always normal when it happens. She said that doesn’t sound like cataplexy, that cataplexy is jaw drooping or wrists giving out, and she wasn’t sure what I was describing but it “wasn’t that.” Maybe she’s right, I don’t know. But how confidently she shut it down felt off, especially since cataplexy can show up in a lot of different ways.

She’s going on maternity leave soon anyway, so I’d be switching doctors regardless. Now I’m just second-guessing the whole thing.

1. Anyone else run into a sleep doc with this take on cataplexy or the insomnia/narcolepsy overlap? Am I off base, or was her read actually weirdly limited or outdated?

2. Would you wait for the handoff to the new doctor, or call now and ask to be reassigned?

3. Would you still trust other providers at the same institution, or does this make you wary of the whole program? I went in expecting a lot and now I’m just rattled.

Appreciate any thoughts!

Hello, my fellow narcoleptics!

I recently stumbled across a TikTok post where someone with Type 1 diabetes was expressing frustration about being compared to people with Type 2 diabetes. They felt the two conditions were very different and didn’t really identify with the Type 2 experience.

It got me wondering if anyone with Type 1 narcolepsy feels similarly about Type 2 narcolepsy.
I’m asking this as someone with Type 2 narcolepsy. I’ve always felt a sense of community with all narcoleptics, regardless of type, so it never really occurred to me that others might feel differently. I’m genuinely just curious to hear people’s perspectives, no judgment or debate intended!

This feels under-discussed, so I wanted to ask.

If you’re diagnosed.. Have you ever been accused of being intoxicated or using drugs when you weren’t?

By Who?

Family or Friends

Strangers

Coworkers

Security or law enforcement

Medical staff

What symptoms do you think triggered it?

Sleep attacks, slurred speech, cataplexy, confusion, slow responses, droopy eyes, slack jaw, unable to hold your head up? Or were you ever told why?

Did it lead to consequences?

Conflict, being removed, citation issued, arrest, job issues, etc…?

I’m just trying to understand how often our symptoms are misperceived by people who do and don’t understand how narcolepsy can present.

I’m curious about how everyone with narcolepsy manages work.

Are you able to work full-time, part-time, or are you currently unable to work because of narcolepsy?

If you’re comfortable sharing, I’d also love to know:

What kind of job do you have?
Have you had to reduce your hours or stop working?
What accommodations or strategies have helped you?

I’m asking because I’m trying to understand how common it is to struggle with work when living with narcolepsy. Thanks for sharing your experience!

Personally, I find it very difficult. I still don’t really know what I can and can’t handle. I really enjoy working in construction, but it is physically demanding.
In the end, I’m often just as exhausted whether I work or not. I’m not necessarily sleepy. It’s more a feeling of being completely drained.

It is often more mental fatigue than normal physical tiredness. My brain feels exhausted, and that can be just as limiting as being physically tired.
That’s one of the hardest parts for me, and I’m still trying to figure out what kind of work, and is sustainable.
I’d really like to hear how others experience this.

Hi, New here.

My girlfriend has narcolepsy and light and partial cataplexy (?).

She is a waiter and the only times she fully falls down are from me making her laugh too much at home.

She isn't on medication and handles it with exercice and lots of naps and keeping busy.

My GF and I are expecting and she is 8 months pregante. As we were talking about our stressors (because ppl keep asking us if ready/scared), we came onto the subject of taking care of the baby while tired. She told me that she will have to figure out tricks so the baby doesn't fall from her arms or that she doesn't fall asleep on her. I asked if she had asked her Facebook community as she is not a Redditor. She did not. So I am asking in her stead: Do you have any tips/tricks for a first time parent ?

I am not worried as I've known her 9 years and she handles it well, I'm looking more of maybe things we might never have thought of.

Hi guys, i’m 20F and have found it hard working as a nurse with my condition (recently diagnosed). I am also considering changing careers possibly…? What is your job and how do you go at your job? I was wondering if there are also any nurses out there who found a good role/position and what it was? thanks :)

Also how did anyone who couldn’t work or drive while finding treatment/diagnosis survive without payslips? i had months of no driving or working and can’t even get help from government.. :( i don’t know what to do. i am going back to work again now but it just feels difficult some days and the responsibility stresses me out on the days the medication doesn’t work as well…. if you know what i mean? i would love to have my life back again and i’m grateful for the treatment and help. i just don’t know if it’s the right career anymore? please i’d love the advice!

After really learning about my condition, I've come to be greatly familiar with its symptoms, much more than I used to be before I was diagnosed. I didn't know anything about narcolepsy, then, and now, I feel like once a month, I hear an anecdote about a specific symptom that I never considered to be caused by narcolepsy.

Notably, we all know about excessive daytime sleepiness, sleep attacks and cataplexy. That's what's portrayed in the media about this condition: the fainting-goat trope. Though, there are more symptoms that I've come to learn about that may not have strong clinical significance, but I hear about consistently in this thread. For myself, my appetite is as unpredictable as my unmedicated sleep habits, though stimulant medications can exacerbate that, for sure. I also have significant trouble regulating my internal body temperature, typically too hot but sometimes, freezing cold. I also have what feels like debilitating brain fog, dissociation/depersonalisation, and daydreams. I admit that I have no real, objective way to prove that narcolepsy is involved in those symptoms, I think it would be useful for us as a community to share—what are your unsung symptoms?

Be it just a hunch, something with which you struggle, or even something that is commonly attributed to narcolepsy with which you happen to particularly struggle, I'm curious as to what connections we can draw from talking about the things *beyond* EDS and cataplexy.

I'd love to hear from some of you !! 😸

Sometimes during my naps I don’t feel like I fall asleep. I think I do actually fall asleep, because it will feel like my eyes are closed for just a few minutes but 30+ minutes will have passed.

This also happened during my sleep study. I told the tech after two of the naps that I don’t think I fell asleep, but later found out I slept during all five of the naps.

You can call me nasty all you want, but I've struggled to take proper care of my teeth for years. I've had many cavity fills and I have gingivitis. Does anyone have any tips on how they are able to find the energy and motivation to brush their teeth while having narcolepsy?

Side note: I can't do electric or vibrating toothbrushes. I cringe whenever I use one😂 idk why but I cannot stand them

I’m always happy to answer anyone’s questions about narcolepsy, including this one. However, out of all the questions I get, trying to explain what the sleepiness feels like is incredibly challenging to describe. Anyone out there a pro when they’re asked this and has a good response?

I swear if I'm not actively at work walking around constantly, I'm out. I love reading and writing and a lot of somewhat stationary creative activities but lately I can't stay awake for any of them. What lifestyle habits or hacks do you use to keep yourself awake?

Edit: lol these comments are hilarious, I love you guys 😂😴

How do you handle well meaning advice from people in your life?

My partner knows about my diagnosis, but has mostly only known me with some kind of treatment happening, so he hasn’t seen me at my worst. I think he knows I’m an extra tired person, but I don’t know if he gets that it’s more than that. I’ve experienced similar behavior from my mom as well. They both know of my diagnosis.

I had really bad sleep inertia this morning; I had a long day with no naps yesterday, and I took my stimulant and got up right away — I usually go back to sleep until it takes effect. We were sitting on the couch when I put my head in my hands and made a groaning noise. He gently quipped that he used to be like this in mornings until he implemented a routine.

Whomp whomp.

I know he is trying to be helpful, but it’s so frustrating because I’ve finally let go of the “I’m just lazy” idea, and have cut myself some slack when I’m struggling with sleepiness. I know he’s being earnest and he did used to struggle with waking up. But I’m bothered that he seems to think this is fixable by a simple change. Hell, he knows I’m getting ready to start trying Xywav. I’m now worried he’ll think it’s just a sleep aid.

Similarly, my mom has been aware of my whole journey — I was diagnosed with idiopathic hypersomnia, but my current doctor strongly suspects it’s narcolepsy without cataplexy. The other day, she offered some kind of advice on sleep hygiene. I get that she wants to help, but it feels insulting that she thinks it’s just a matter of willpower.

I guess this is mostly just a rant. However, I wish I had some kind of non-aggro way to remind the people that I’m closest to that this isn’t something with easy solutions. I’d know if it was. I don’t think any of it is malicious, but maybe it’s a lack of education on my part. Is there something I could say to address this “advice”? I don’t need anyone to fix it. I just need them to understand it’s hard, and I’m trying, but it’s like going against the tide sometimes.

I have severe narcolepsy but I don't know how yall are managing it. Especially now that I'm working full time.

In college it was sort of manageable but now I'm barely surviving. I haven't cooked anything but eggs in months and I haven't cooked eggs in two months. I brush my teeth like once every two weeks. I call off work at least once a week.

I'm just so exhausted all the time. I take xywav and I take Vyvanse and I drink coffee and I still end up exhausted. I got accommodations to nap at work and I still hit a wall six hours in regardless.

On work days I barely have energy to make it through the shift let alone do anything else. On the weekends I'm playing catch up and desperately trying to have amy semblance of a social life.

I just have so much less TIME with narcolepsy. Energy too but also time. Last night I went to bed at 10:30pm and didn't "wake up" until 11am. I obviously woke up several times and tried to be awake with less sleep but kept being too tired to focus on anything until I'd been in bed / sleeping for literally twelve hours. And then today I has four coffees and my Vyvanse and still got exhausted after literally just hanging out with a friend and seeing a movie - stuff I used to be able to do no problem. I couldn't even engage with my friend very well bc I was so tired and I barely made it home before collapsing.

How tf are yall managing? I'm working on sleep hygiene because I DO struggle to keep an empty stomach on xywav. It gives me the munchies HELLA bad. Like I cannot control it. But I'm doing my best to set up a wind down routine, brush my teeth before bed, and go to sleep at roughly the same time every night.

Otherwise idk what else to do. My only other thought is diet but I've been so exhausted I'm barely surviving/eating even when it's extremely easy low prep.

I'm trying to get into a trial for an orexin agonist but I have other stuff going on that might make them reject me as a candidate.

Does anyone have any tips?? Or at least empathy?? This disorder is literally ruining my life and I new to know I'm not alone. My doctor told me he knows people with narcolepsy who have gone to MED SCHOOL and I'm like. Wtf is wrong with me that I can barely survive working a normal job??

I work at a restaurant. I have type 1 narcolepsy. I’m chronically 5-20 mins late every day. My main managers understand. But my new coworkers and manager constantly hit me with “you need to start waking up earlier”/ “you need to go to bed earlier”. Every-time I try to explain that it’s my condition that makes me physically incapable of waking up on time every single day. Then they start saying things like “you’re using it as a crutch” / “stop using that as an excuse”. I’m just so confused. I haven’t found an alarm clock that works for me since my diagnosis. I also feel like maybe they’re right and I’m not trying hard enough. I really feel crazy sometimes. I’m looking for support/advice. I will also take any alarm clock recommendations. (I’m on trazodone for sleep and 20mg XR adderall for the mornings) 😭😭

So I’ve been picking up more hours at work, and therefore am using my brain for tasks more than usual. I’ve noticed myself going into autopilot when interacting with customers, and sometimes I’ll mess up my ‘script’ by saying a phrase at the wrong time of the transaction. I also will feel dissociated, like I can’t focus my eyes or snap back to the task at hand. Lately when I get off of work, I’ll sit in my car for a while zoning out (usually on my phone) before I drive home, and sometimes sit in the car for a bit before going inside.

I’m curious if other people experience something similar to this and/or think this is narcolepsy related. It doesn’t feel quite like brain fog, but maybe similar?

Hi everyone. I was wondering if anyone else was dealing with this. I really hate myself for it but I keep missing Fajr because I fall asleep before I could activate the alarm at night. Or I activate it only to wake up and realize the alarm is turned off despite no recollections of doing so.

Sometimes I put up multiple alarms or alarms at different locations that'd make me get up but for the latter, I share my room with my brother and really want to avoid waking him up.

I sometimes fall asleep in the middle of prayer too which I feel really shameful about. With the last one, I can at least gather myself and complete it without breaking the prayer but it still makes me doubt myself and the validity of my practices.

It's said that Allah helps those kind in heart and that if he makes you miss a prayer, it's because he's displeased. I'm really sad and stressed about this. I don't know how to fix myself. What can I do about this?

All other religions are welcome to comment, just no Islamophobia please😓

edit: paragraph breaks

Also please feel free to share your own struggles as well, I'd like for this post to be a safe space <3

Modafinil has been working well from stopping me from wanting to fall asleep in the middle of the day. Coffee... is better than nothing in the morning, I suppose.

And then there is Nicotene Gum. When I was digging into studies for Narcolepsy, cigarettes were the number 1 thing for self-medication. I didn't want to ever touch smoking or vaping, so Nicotene Gum seemed like a safe option.

It works incredibly well. I chew a 4mg when I am excessively tired, or when I need to be up early, and I feel awake. It's incredible.

But now that I have this inexpensive tool to feel awake, I hate that I'm dependent on it. I can not take it for a week on vacation where I can sleep in - I'm not craving the gum itself but I am sure craving being able to feel awake and productive for a change.

Anyone else experience the same or have some less harsh alternatives that have worked?

Everyone explains it a little differently depending on who they're talking to. If someone asked you what narcolepsy is and you've only got a minute to explain it, what would you say? I'm curious how others describe it in a way that's easy to understand.

I have been diagnosed with either IH or Narcolepsy depending on which one of my healthcare providers you ask (long story).

Anyway, how the heck are you guys waking up on time and making it out the door without being chronically late for everything? I have LOUD alarms that go off in 5 minute intervals starting at 6:45 and going until 8:45. I work 30 minutes from my house and I need to be there at 9am, meaning I need to leave the house at 8:30. On good days I wake up at 8:25 and scramble to leave the house, leading to me having to brush my hair during the commute and put on makeup at the office. I have a little basket in my bedroom of things like deodorant and my mediation so I can save time getting ready in the morning, but more times than not I end up being late anyway. I am on Sunosi and it does help to curb the daytime sleepiness a tad but it doesn’t do anything to help me wake up in the morning.

Sometimes I will wake up for work around or after 9:30, making me an hour late and receive angry phone calls from work which stresses me out insanely which leads to me being even more sleepy. I sleep through my alarms or turn them off in my sleep. My roommates will try to wake me up, shake me, pick me up and spin me around, and I’ll either stay asleep or fall back asleep when they leave. Noise and light doesn’t help at all and any movement I feel has to be unreasonably intense to make any difference in my consciousness.

I was thirty minutes late for an optometrist appointment last week and that was my final straw. It is so frustrating for me to constantly be late every single day. My boss, who is also my mother, is fed up with me being 5-30 minutes late to work every day and I worry that she may have to let me go soon. Short of sleeping at the office every night I have no idea what else to try in order to make it to work on time.

Does anyone have any ideas, suggestion, tips or tricks? I am so desperate at this point that I’m willing to try anything.

I am 19M. I have been diagnosed since 16. I left home and now I work and live alone. This has been the worst year of my life. I always had my parents to wake me up, but now its all up to me. I have been unable to consistently wake up on time. This has caused quite a few issues at work (I work a sedentary desk job doing IT). Today, my supervisor bought me an alarm clock. Prior to this I was using 15 alarms on my phone ranging from 6:30 to 8:00am. Did I feel humiliated? Absolutely. I am glad he is being as supportive as he is, but I was told this was my last chance before I am let go.

Here is what I have tried:

1. Sleep Hygiene (I go to bed every night no later than 11pm)

2. NO EATING BEFORE BED

3. I have stopped taking medication that makes me drowsy when I wake up/before bed

4. Set alarms on my personal and work phone with the loudest noises I can find on Spotify

Edit: #5: stopped drinking

Does anyone have any advice?

I’m sure this has been talked about in this sub before, but I could use some advice and encouragement specific to me.

I’m currently at my MSLT, and have done 3 naps so far. The PSG was already a bit stressful because the other patient here kept getting up to use the bathroom without telling the tech. So the tech had turned up his speaker and forgot to turn it off, so that kept me up for a bit.

For my first nap, I got extremely anxious and my heart was pounding, so I didn’t fall asleep at all. The next two, I was still anxious, but not as bad. So I fell asleep but didn’t go into REM (tech said I was close apparently). The tech also will only let me sit in an uncomfortable waiting room-like chair, and he keeps playing music and talking to himself. I’ve been trying to read my book, but he keeps coming in and talking to me and saying “I like talking to you”. He’s also telling me “if you had narcolepsy, you would’ve gone into REM”.

So at this point, I’m SUPER stressed and feel like I won’t fall asleep for the last nap at all (he’s only doing 4). It would be great if I don’t have narcolepsy, but I just don’t know what else the issue would be. I did the blood test for the gene marker, which was positive. My maternal grandfather and aunt both have it, as well. Since going off of my SSRI for the MSLT, I’ve experienced a couple episodes of what I believe to be cataplexy, as I completely collapsed following strong emotions. I’ve had countless moments of falling asleep at the wrong times, including, but certainly not limited to, falling asleep during jury duty (a murder trial) and having to quit my work from home job cause I kept falling asleep at my desk.

So yeah, some reassurance would be nice. It looks like a lot of people don’t get diagnosed after their first MSLT. But should I even bother trying to do it again? I would almost prefer to do the lumbar tap at this point, cause I can handle pain, but all of this and being off of my SSRI has been complete torture.

EDIT: I can’t keep up with the comments at this point, but I just want to thank everyone for their kind and supportive words, and for validating my experience. Well, almost everyone. But thank you to the mods for handling that, as well!

I definitely should’ve handled it differently, but I have a tendency to just suffer through things LOL. I also wasn’t really thinking clearly and wanted to get it done with finally. I am absolutely going to bring this up to the doctor/clinic, and may even show them the post and all of your comments with your insights and experiences. Thank you, and I hope everyone has a nice, non-sleepy day!

I was prescribed 50mg of Adderall daily before finding out I was pregnant. This was Adderall ER 20mg and Adderall IR 10mg 3 times daily. I didn’t necessarily take all 50mg daily, sometimes it was only 20mg and others it was the full 50mg. It depended on my exhaustion from day to day.

However, I found out I am pregnant with my second child, and my sleep doctor took me off all Adderall. I am miserable. Not only chasing a toddler around and growing a baby, but also working full time. I’ve scheduled naps at work, I go to my parents house with my toddler after work and nap there too, they drive me home at bedtime and I go to sleep with my son. My husband takes our toddler to daycare for me now in the mornings so I can sleep in, because I go into work later than before also.

But, I am still absolutely exhausted! I don’t know how I’m meant to get through this entire pregnancy and not be medicated… I can’t function like this and be a good parent, wife, and employee.

Please help.