r/Narcolepsy

I've explained to a few people that I have a neurological sleep disorder and am never fully awake and never fully sleep and that my brain doesn't go through sleep stages at all, so I am absolutely chronically exhausted all of the time.

They look at me and go, "Oh, that's terrible. I get tired, too." AND THEN they go off about hormones or getting older or ask me if I tried melatonin/other "natural remedies" or go off about other nonsense that has NOTHING to do with narcolepsy or sleep disorders of the brain AT ALL.

I even had one friend who has known me for years start going off about how "everyone nowadays thinks they're dealing with something horrible and they're the only ones in the world who have problems and it's really not a big deal - they're just whining and being babies" as if me saying I had NARCOLEPSY wasn't a big deal. I promptly told him that I have a NEUROLOGICAL BRAIN DISORDER AND MY BRAIN LITERALLY DOESN'T SLEEP so that is why I am exhausted and had to stop coaching and doing other things I used to do. I am too tired to go fully off on him or anyone, but wow do I want to when they go full-idiot in response to a serious neurological condition. I mean, would they say that to someone with epilepsy for crying out loud? (We all know the answer to that.) And even after I start with "I have a neurological brain disorder" they still don't get it. HOW ARE PEOPLE THIS DUMB????

And NO, they have NO IDEA what it's like to have narcolepsy. NONE.

I don't understand how so many people are such bad listeners. It's like talking to the vacuum of space itself. I swear if I blew into one of their ears, I would hear a wind tunnel sound.

Anyway, I just wanted to vent to people who would actually understand what it's like to be the walking dead pretending to be alive in the land of the living for your entire life while pushing through soul-shattering exhaustion just because we had to. Thank you for reading. Rant over.

My daughter was diagnosed with narcolepsy with cataplexy in middle school and has trouble waking up in her own. I have been her primary wake up service since, but I want to wean her off that and start waking up on her own this year to get ready for life at college next year. What alarm clock or alarm app do you recommend to help wake her from her nightly coma? She's a heavy sleeper, and is prone to falling back asleep easily and deeply.

US specific post because our Healthcare system is uniquely awful. But how does anyone afford having a chronic illness?! My copay for my doctor visit is over $100 and he wants to check in every 3 months when adjusting meds. I just started Xywav and my copay is $6k per refill. I got the coupon but apparently that's only 18k per year. It's less expensive for me to be unemployed than pay for the meds that make work possible!

I'm super lucky in having a supportive spouse. If I needed to not work, we could make it work. But I'm planning to just go back on Armodafinil only and take a two week med break every couple months to make it be remotely effective. And I guess go on blood pressure meds. Oh! And my insurance won't cover Armodafinil because I have IH. Thank God for GoodRx or I would just be sleeping all day everyday.

Sorry, I'm just fed up and exhausted mentally as well as physically.

Hey everyone!

Just popping in here to see if anyone has experienced this while taking stimulants. Has anyone else had stimulants help keep them awake just enough so that their body can't nap anymore, but they desperately wish you could because you know that would help alleviate EDS? It feels almost like my insomnia I experience at night now, but during the day. Like, yay, I can stay awake, but only to just not be able to nap when I wish I could, and now that's a different kind of struggle that feels just as bad, but in a different way?

Edit: thank you all for sharing your experience! It really feels like I'm frozen in a state of mind-numbing paralysis.

Hi all!

After advocating for myself for years and being brushed off as just “a sleepy girl” or someone who “needs caffeine to function”, I finally got a referral to a neurologist that specializes in sleep and my consultation is this Friday! Needless to say I am very excited that my concerns are being taken seriously.

A little more context: I have been told I have hypersomnia, but now my doctor recommended a specialist as my symptoms sounded more severe as I talked about it more. I scrolled through this Reddit a LOT over the past few days and the more I read, the more I realized something is definitely going on. I truly thought it was normal for people to have a sleep latency of < 5 minutes and feel exhausted after just an hour of doing anything.

I was wondering how I should go about sharing my thoughts in my consultation, as I’m almost positive that I have some level of narcolepsy. I also was wondering what the next steps after the consultation would look like?

I am in Scotland so was hoping to speak to other ppl from the UK as I know the prescribing guidelines so different around the world BUT am also keen to hear from women who have stayed on sodium oxybate (Xyrem) during pregnancy.

I am in the very early stages of pregnancy, I found out 5 days ago.
Since then I have reduced my medication (was on Methylphenidate 5mg, 10-15mg per day, sodium oxybate 7g total at night)

I haven’t had any methylphenidate for 2 days. I have put my SO down to just the one dose of 2.25g however my nighttime sleep is absolutely horrendous and I am waking every 15-30 mins when the SO wears off. I’m getting about 100 minutes sleep at once from it, but then it’s a bit like being tortured until 5am when I finally get back to sleep for a longer stretch . Insomnia was always my worst symptom pre meds.

I am falling asleep every few hours during the day which isn’t ideal but as I WFH I can probably deal with this.

What I can’t deal with is the thought of being unable to sleep longer than 15- 30 mins at a time overnight for the next … year at least.

I know my consultant is going to tell me to stop everything and my preference would be to not take anything at all but jeez is this it? Is there nothing else? I don’t even think I can have a cup of camomile tea 😭

Has anyone in the UK stayed on SO but at a lower dose?
Or anyone who stayed on it but lived elsewhere, how was your experience? Was your baby ok?

Is anybody else prescribed muscle relaxers and Lumryz / Xywav?

I take Lumryz and take cyclobenzaprine 5 mg as needed. My doctor tells me I can take them 6 hours apart - but I have major healthy anxiety and would just like to know others have been okay on this combo :)

Thanks!

HI everyone,

About 6 years ago, I went through almost a full year of what seemed like narcolepsy symptoms. Every time I went to the ER, the doctors would mention narcolepsy as a possibility (I never heard of it before).

The symptoms kind of went away for about 6 years, but then they came back about 6 months ago.

Can narcolepsy symptoms really come and go like that? Is it possible to have significant symptoms for a year, have them improve or disappear for several years, and then have them return?

Another thing that makes me wonder is my family.

Both of my parents have many symptoms that sound like narcolepsy. In my family, it has always seemed completely normal for people to fall asleep at the table, while talking, during a dental procedure, after drinking coffee or energy drinks, they just go from talking to snoring in a second and sometimes they will say funny things that don't make sense before falling asleep.

Could this just be some kind of familial tendency to be extremely sleepy, rather than actual narcolepsy? Or does this family history make narcolepsy more likely?

I'm having my sleep study next week, and I'm honestly super nervous about it. I would really appreciate hearing from anyone who has experienced something similar or has knowledge about narcolepsy and how symptoms can fluctuate.

Yeah, the title pretty much says it all. Lol.

Has anyone had any experience with bedphones? They read as the best possible headphones to sleep in (not earbuds but still over the ear) with good noise cancellation and comfort.

For times when I'm in my more insomnia phase or times when I want desperately to nap but can't with whatever sounds are going on or especially when I get migraines, I've wanted something that cancels the noise as well as my over the ear headphones with active noise cancellation while still being comfortable sleeping on my side. I haven't found any good set of ear buds that provide that kind of quiet or side sleeping comfort.

I have Dx’d type 2, but I was thinking today and I’m curious if it’s something weird enough I should bring it up to my MD.

I can’t express anger physically. If I make a fist really tight (only when angry) I physically can’t make it tight. My fingers “spasm”. I can’t punch, hit, kick, or even scream tbh. When I’m really upset I just kinda sit there. My body does feel really heavy in these moments, but I always attributed it to mental exhaustion/dissociation.

This only happens when I’m really really upset, which is rare but it’s always been annoying because I physically can’t express anger physically, even if in a safe way or environment. Instead I just kinda sit there and cry.

Is this possibly cataplexy? It is technically my strongest emotion but I always thought it was just a psychological block.

Hey sleepy heads,

I just wanted to put it out there that I know so many of you are struggling; I am too. I used to have great insurance - sodium oxybates, stimulants, and my corner stone - Venlefaxin, for rem sleep largely covered.

Due to extreme circumstances, I had to walk away from my career for a bit. Making money wasn't an issue, but paying for meds became impossible.

Right now there are a ton of clinical trials going on. I just got into one.

The best part? It's paid.I get the medication for 5 years for free. I'll pocket 12k for 14 weeks. It's not a fortune, but it's not nothing and hopefully the information will help others.

The space is having a bit of a Renaissance with Takeda breaking through with their type 1/2 daily medications, and they're extremely successful. Game changing even.

While I can't disclose what study I am in, there are MULTIPLE ongoing trials...it's a fucking arms race after a century of neglect.

Have IH or N2? The Kira Study covers those.

The Brilliance Study covers N1 & N2.

My point is I see so many of you are hurting and it breaks my fucking heart. If you feel like you've tried everything, maybe this will be your ace in the hole.

Best of luck 🤞

N2

Who are all the people who keep calling and saying they are assigned to me. I think I’m on the 4th person and she’s coming to my house? I just started it about a week ago. Did I miss an explanation of this somewhere? I’m cautiously hopeful because I’m sleeping for the first time in my life, but I’m easily confused and can’t understand why there are so many people assigned? Is everyone having this?

I had my MSLT on Sunday and I just got my results back. I didn't have any SOREMs, but my mean sleep latency was 4.9 minutes so, they noted a diagnosis of IH. I'm feeling great to have some sort of answers to be honest.

So I have been keeping up with it, but still struggle to find info on it all — when will this be in the markets in the US, or when can i sign up for trials?

This seems like the medicine we always needed finally becoming available. Ready for it to change my life.

Any info help, thanks!

Anyone else taking a GLP-1 and trying to fight through the extra fatigue? I’ve been on Zepbound for about 3 months and the excessive fatigue is getting the better of me. My regular routine for the past few years has been 150mg Sunosi each morning, and a 30-40 minute nap at lunch. That used to be enough to get me through the work day, but since starting Zepbound, I’m back to needing high doses of caffeine just to make it through until I can crash at lunch. I’d love to hear how someone with N1 combats the GLP-1 fatigue. If one more person tells me to eat more protein or go to the gym, I might hurt someone. Lol For reference, I’m 54F down to 160lbs.

I usually sleep around 15 hours but this time I slept 48 hours without waking up once. And still the doctors insist there’s nothing wrong with me “your bloodwork looks great”????

I’m supposed to be going to college this upcoming semester and I’m worried about being able to nap in public places.

My school isn’t very big and the library is the only place I can think of with couches, but I can’t imagine setting a loud alarm in a library. Also, I have this fear that if I use earbuds, they’ll fall out and I won’t wake up.

I also worry about someone stealing my laptop or wallet while I’m fast asleep.

I’d love any advice or tips!

I haven’t been on any form of birth control for at least two years. I went to a new primary care physician, who did not know much about narcolepsy. She suggested the Nuva Ring. I inserted it on August 10th. I usually go to the gym around 3 to 5 times a week, but August has been a busy month and I had a work convention one weekend so I have not been to the gym in around 12 days. I just went back yesterday, and again today. I was extremely weak to how I normally am. I’ve taken breaks from the gym before and I have not felt this weak. I also feel like the past week I have been much more tired and just lethargic in general. I’ve had bad days with narcolepsy where I feel more tired than usual, but it seems like it has been every single day. I’m wondering if anyone has experiences with the Nuva Ring and narcolepsy. I’m not sure if I’m just being paranoid about it or if people actually have similar experiences and the Ring isn’t a good choice for someone who has narcolepsy.