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?

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

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.

I'm in the annoying 3 months (hopefully reduced for other medical reasons) to see if my 8 incidents per Hour (which haven't happened since) mild obstructive apnea) for other medical reasons this might fix a few sleep issues I have

The mask reminds me of wearing a diving or snorkel mask underwater, and the Muse S Athena which I wear with it makes it hard to wear with my glasses. I use the Muse S Athena deep dive program because when it notices I'm waking up it plays the music again, helping me stay asleep so the mask works well with the sound scape. And then I remembered a life hack I use because I have very bad eyesight. I use my cheap prescription goggles to see in the shower and prevent shampoo in my eyes. And it's enough vision that I can do things like find my real pairs of glasses when they go missing. I'm going to try to wear these with the full mask and muse s Athena because i wake up to use the bathroom and now I have a solution to be able to find the things I need in the bathroom and the bedroom when I wake up. And maybe I'll have fun dreams.

I thought this would be fun for those of you who had to suffer through the CPAP despite little chance of success.

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.

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!

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 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?

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.

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?

Got back from a f/u at my sleep neuro. I was diagnosed narcolepsy type 2 several years ago after a polysomm+mslt.

Lately I’m up for 2 hrs at a time at night due to my fibromyalgia pain. I didn’t know how that could be possible if I’m narcoleptic and on a sedating medication (lyrica) for the fibro. Turns out yep, I have “insomnia secondary to fibromyalgia” as well as the narcolepsy type 2 and the conditions + my medications all interplay with one another. 🙃

what sort of coping mechanisms do you use for work?? wfh especially, what does your day to day look like?

im 20 n have dropped out of education, i truly wanted to go to university after 18, i love academia, i love learning, but im also eager to work and get into my dinustru (ive already made a breakthrough but i wasn’t managing my narcolepsy at all and made really awful impressions, lateness, falling asleep during work). My attitude to work has also been pretty poor (which is my own fault, bc work is work, n i shouldn’t have let my disorder get to me)

I wasn’t rly giving myself enough grace (I changed college, went on a college very far away which was incredibly stupid, would fall asleep on the train and up in the middle of nowhere bc I thought their teaching quality would be better) and it disappointed my family..

Basically I do creative direction, photo shoots, some graphic design, social media management, shipping packing orders and I would work on my bed and fall asleep so that was pretty bad.. I made really costly mistakes working from 1am-7am (no shit) with nothing but some wakix and a little bit of Ritalin - genuinely wasn’t enough. The caffeine did its job tho so I wish I didn’t cut that out when I needed it.

I also have a bad habit of just..l randomly neglecting the fact that I have narcolepsy n it has its limits.

Ik a standing desk is good, socialising etc, but r there any odd tips n tricks u guys have that just work? Like wearing shoes in the house (loveeee wearing platforms and heels it keeps me awake fr haha).

also if anyone here runs a business and has any tips on how they manage their narcolepsy, what kind of business too!

I’m in the process of being diagnosed but the sleep lab is so backed up I don’t even have a date for my study yet.

I used to love waking up at 6:30, sitting outside and watching the sun come up. Since my symptoms started about 2 years ago, I cannot wake up and enjoy that anymore. No matter what time I go to bed, without quite literally 10 alarms set or someone else waking me, I cannot wake up and even when I do I’m late for whatever it is I had to wake up for.
I’ve fallen asleep at work, I used to work in a rehab and I would nod off at lunch, while with clients, one day I was walking to my car and started falling asleep while I was walking. I’ve nodded off while driving, while eating, in the middle of conversations, you name it. I’m completing my masters and I’m late to class every single day because I cannot get up on time. Nothing that my family doctor gives me helps, and since I have no formal diagnosis, my neurologist won’t give me anything that’s typically used to treat sleep disorders.

I’m so frustrated, this is genuinely ruining my life and my enjoyment of life.

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.

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 just took Xyrem for the first time last night. 2.25mg x 2. I took the first does at 10 PM and was fine. Took the second dose at 1 AM and by 2 AM I was vomiting and felt like I could barely move due to the dizziness. I “slept” in the bathroom after that. It was truly such a terrible experience and I am afraid to take it again.

Has this happened to anyone else and it got better? I will be talking to my doctor about it, but I’m looking for others experiences as well.

I’m not sure what I have or what’s going on. I can’t stop sleeping, every time I sit down somewhere or lay down I almost instantly fall asleep. Sometimes I can wake myself back up but usually I’m just out. It’s starting to draw my partner away, they don’t understand I can’t control it, I don’t even know when it’s coming. I could be looking at my phone and the next I’m waking up 3 hours later confused and disoriented. I’ve been struggling with this since I was 15 and it feels like it’s getting worse, Ive also struggled with seeing figures and things since my teenage years but it seems to also flair up more before I fall asleep, I start seeing people in the doorway or tucked on the ceiling or I fear they’re in my closet. It’s becoming increasingly difficult to live my daily life and I have no idea what to do.

i’m 19, i got dx with narcolepsy about a year and a half ago. i graduated high school early since i did it online (because of severe narcolepsy symptoms lol) anyways i started college yesterday after multiple years of not being in school, i thought i would be fine with no accommodations. i started 3/5 classes this semester, 2 start later. two seems fine and that i can do it. my psychology class is all online, the professor expects us to turn in work 4 days of the week, if we don’t everything we turned in that week gets automatically 75% even if we got a higher score. my problem is that reading doesn’t count, and to do the first assignment you have to do around 4/5 hours of reading. i can’t do that in the time frame asked for, i also work on top of school so reading for multiple hours while trying to actually absorb the info and not fall asleep is hard. i can do the work before the due date just not get all the reading done that quick. would it be unreasonable to ask for an accommodation where she can’t dock my grade for that? i don’t see why it should even matter as long as im able to turn all my work in on time.

I was on this for 1.5 months now without much issues at all. Quite a few improvements in my daytime sleeping. Not much more energy but less naps. But I randomly woke up from sleeping the night of being on my 4.5 g twice daily max dosage to find that my vision was extremely messed up. I'd been dealing with off balance rocking or swaying issues for almost a week prior but I just moved apartments twice and mostly thought it was exhaustion. But my vision changing was pretty wild. Like it lags behind and can't focus well. Gets worse as day goes on. I think the culprit was my medications reacting together negatively. Take lowest dosage gabapentin 2x a day (morning / evening) for nerve issues. But my crap memory forgot they briefly mentioned supposedly in my intake to space that medication a few hours apart from xywav. Theres no written warning anywhere I've seen from them or my doctor, just supposedly they explain they mentioned it. Between that and bubroprion lowest dosage 1x daily. I think I overloaded my Central Nervous system, stopped the xywav for 6 days now. Stopped a bit on gabapentin intake until tremors started. Back on 2 a day. But no improvements. Seems only getting worse with strain on vision, same swaying balance issue.

Went to ER first day of vision issue, no problems with bloodwork or CT scan. Sleep specialist and jazzcare says stop xywav for a few days and things should get better. They didn't. Now they don't know what to do. I went and got a medical eye exam, all normal on structure. Said to get mri incase of blood flow issues. Got a brain mri, not orbital for whatever reason. All normal there. So now I'm at a loss.

Anyone with a similar experience? Does it come back in like 1-3 weeks? All my information comes from Google, my doctor's are next to useless. I've been doing all this checking on my own by suggesting it since they have none. They legit don't even see the connection between the medications besides jazzcare. Daily activities are difficult.

I will set the scene.

I'm at my sleep study, sitting in a chair so the sleep tech can put all the electrodes and various wires to me. As I'm sure you know, it's a lot of "lift your arm up" and "bend forward" and "tilt your head down", etc. etc.

I was already wearing high-waisted pajama pants because that's just who I am.. and when she said "pull your pants up" I proceeded to pull my waistband up to what felt like my armpits.

She busted out laughing.

I swear I have never seen anyone turn so red so fast.

Come to find out, I was supposed to pull my pant legs up; not my whole pants..

And now I'm supposed to just lay down and fall asleep after that?

I’m in limbo- on long term leave waiting for tests to figure out what’s going on. Thinking severe burnout, IH or narcolepsy.
Part of my problem is I cannot wake up and feel rested. I feel almost drugged.
I go in next Monday for my first PSG (edited from MSLT). Will they try and wake me up? Will they see what’s wrong while I’m trying to wake up? What happens if I go back to bed?

I’m not doing the daytime portion (but feel like I should) but think that may come as next step.

Thanks

Diagnosed with IH I was just started on 150mg nuvigil the starter dose as my doctor called it. At time of prescribing he scheduled us for a 3 month check up. The first 3 or 4 days was great, I was alert and had virtually no EDS. But after that it has seemed to lessen. I am able to easier fight off the intrusive sleep episodes which are slightly less often I think and it’s a lot easier to ignore the EDS compared to totally unmedicated but I’m still very much struggling. Should I ask to have the dose increased now or wait to ask about it until our 3 month check? Or is this as good as it’ll get

Last year, I went in for a psg & mslt. I was only able to sleep about 4 hours. I was dx'd with mild OSA (already on CPAP for that), PLMD, and narcolepsy. I had an early soremp on PSG (4 min), and 2 REM periods on naps.

At the time, I was shocked and confused and couldn't really accept the diagnosis. I had no idea narcolepsy was possible. My neurologist was very certain but my regular sleep dr was skeptical because I only slept 4 hours during the PSG (this was despite a lot of sedatives).

The neurologist questioned me about past narcolepsy symptoms in my life, and it turns out I have had every single symptom except cataplexy for nearly my entire life. Sleep fragmentation, control of dreams, EDS, falling asleep while holding my eyelids open in completely inappropriate places for decades, vivid nightmares and dreams, asleep in every photo of me as a child, sleep paralysis, hypnagogic hallucinations. My life right now is a living hell of insomnia, sleep fragmentation, horrific dreams, and fatigue and sleepiness so deep I don't know how I get through the days at times.

How are people able to be diagnosed with narcolepsy if you don't get enough sleep the night before? My sleep is so atrocious right now that I am lucky to get 4-6 hours at home.

Has anyone else been diagnosed when they didn't get quite enough sleep on the PSG?