TLDR: Requested 7-3 pm schedule at remote job due to frequent meetings scheduled outside of hours. Request was denied for reasons bulleted in email image.

So I know my request is pretty particular but as I mentioned I've tried the 9 to 5 and I just end up crashing after 5, falling into a series of sleep attacks well into the night to the point where I can't eat and my sleep schedule goes to shit.

This is why I try to nap before 5 and after getting out of work as a preventative measure. I also try to take a nap during lunch which has also been an issue due to workload but I don't even want to attempt to discuss that with them. As well, with an early schedule I need to cook and eat by 5 so I can have some lead time with Xywav which is much more effective after a 3 hour wait for me. But even if the expectation was 9 to 5 they've seemed to broaden it to just general availability when we need to. I literally have a meeting from 4-6 pm Monday.

To be fair my doctor was annoyingly sparse with the documentation and simply said my hours needs to be from 7-3 pm even though they asked for specifics. On my end, I said I had recurring flare-ups that worsen during the day or following days if I don't attend to scheduled treatment routines. I'm trying to avoid disclosing narcolepsy because that will just lead to more stigma not that it would help because it seems like they're pretty determined to deny my request.

My VP just scheduled a meeting with me Monday to discuss my questions. I don't know how I would actually participate in such a conversation, anxiety is high, and I'm looking for advice.

I have been experiencing narcolepsy symptoms for the last three years and was fairly confident it was type one because of my clear evident and recorded cataplexy events. I had to take a medical leave from work a year ago due to having multiple severe sleep attacks resulting in automatic behavior with zero recollection of actions or conversations during that period usually lasting around five minutes. I finally got my official narcolepsy type one with cataplexy diagnosis a few months ago. I am taking sunosi and ritalin for daytime alertness and started on xywav a few weeks ago. I thought I was making really positive progress and haven't needed any daytime naps and the sleep attacks had severely diminished. I felt awake and alert the whole day. I have run out of financial resources and had to return to work as Im on the verge of losing my house and car. I started two days ago and my first day was a nightmare. It felt like I instantly regressed back to my worst place when I took my medical leave. I had to go to my car for three short naps as I could not physically stay awake. Even with those I had multiple periods of severe brain fog and dont remember the last five minutes of driving home and apparently called my mother while driving with no recollection of doing so. Upon arriving home I made something to eat and woke up sitting down with unchewed food in my mouth. Second day was similar to the first. Had to go to my car three times and instantly fell asleep. What could have possibly caused such a severe regression in a short amount of time when I was doing so well. Just being in a different environment than my home? Having to wake up an hour earlier than what I normally have been? Its hard to imagine just those could cause such a severe backslide overnight. My doctor is very difficult to get a hold of and is booked months out for appointments. Im desperate here. I have to work. These first two days have made it feel like Im completely incapable of working at this point. Im a service advisor in the auto industry. Any advice or suggestions would be greatly appreciated.

hello. i am new. i had a brain surgery 11 months ago and then i started having sleep attacks. we thought it was connected to a medication and i stopped the medication but the sleep attacks did not stop. they happen less frequently but now they seemingly have no apparent triggers. i am also dealing with mast cell issues and pain issues. it’s a whole slew of issues and i’m trying to untie all of these things and figure out which is which is which.

sleep attacks: they feel like i am being smothered when i try to resist them. like i’m drowning. like a live night terror. i have fallen asleep in physical therapy, in multiple doctors appointments, everywhere else, and in the shower twice.

when i tried to explain these to the doctors i just said hypersomnia but that seemed to make them think just my sleep schedule was messed up. they don’t understand that i CANNOT resist these sleep attacks. it’s not just a light afternoon nap. it is horrifying to experience. and no one has taken it seriously yet. the only time a doctor sat up was when, years ago, i said i couldn’t be prescribed adderall because i always fell asleep on it. because that doesn’t happen to normal people. but that didn’t seem connected to these sleep attacks, which i had never experienced until this last year.

does anyone have any insight into what wording i can use to be taken seriously? any advice would be greatly appreciated.

I am not diagnosed but my doctor has recently ordered a sleep study to see if I have some kind of parasomnia involving sleep paralysis and cataplexy and narcolepsy may be on the table. I've been researching narcolepsy a lot in the past few days and realizing how little I actually knew about it and how poor media representation is of it. Up until starting to read up on narcolepsy last year, I genuinely thought it was just a condition that makes you pass out randomly and sleep for extended amounts of time. I gathered most of this from how I'd seen it presented in films, books, etc. I didn't realize that it's so much more complicated than that so I never considered that my symptoms could be narcolepsy and just beat myself up over being lazy and unable to fix my own sleep schedule enough to stay awake during the day. I'd really like to hear if anyone has more thoughts on narcolepsy rep?

Does anyone have these two disorders? Curious if there is anyone else with them!

Hi Hi! Some of you may remember my post a couple months back about my MSLT results resulting in a vague sorta diagnosis. I had a sleep latency of 9 minutes and 0 SOREMPS and I had cataplexy confirmed in office. I had left my appointment with an action item of seeing psych to get stimulants instead of a Type 1 narcolepsy diagnosis. All of you who commented really helped me and gave me that push to continue.

The good news is that I got a chance to see a new sleep doctor. This time it was a night and day difference. Their office took the time to listen to my symptoms and reviewed the extensive testing I've had done. Despite my MSLT results they have gone ahead with "yeah you got type 1 narcolepsy and we are going to treat you for it". I asked if I needed to repeat the MSLT and they said they are gonna do what they can with insurance for now. If insurance crys too many rivers they will make me retest. They also talked about getting me on track to take Orzeyful when its available! (Which will most likely need a retest, I'm aware)

So for those with borderline test results. A diagnosis is possible. If the voice in your head is telling you that your doctor might not be the best fit for you, then listen to it. This office seems like they will work me to really find a medication treatment that works with me and my lifestyle so that itself if worth its weight. Try to keep hope and always advocate for yourself.

I was (finally) diagnosed N1 with Cataplexy. I’ve had a lot of moments looking back like, “Oh yeah, that makes sense now.” But a couple of nights ago I had the funniest “aha” moment ever.

In elementary school, there was a boy that I had a huge crush on. I mean massive. A girl’s first crush is no joke, so I was shaking in my boots around him constantly. One day I was at my locker and his was next to mine, and he briefly touched my right hand/arm. My entire arm got tingles and flopped to my side and I sat there feeling weak and tingly. I always looked back at it like, “Yeah, I just really liked that kid.” But a couple of nights ago it occurred to me that I was so excited about the physical contact that I lost muscle control in my arms and my entire body weakened because of cataplexy. Whenever I told people in the past they laughed it off and said nothing like that had ever happened to them. There are little sprinkles of that all over my life where I think of something now and a little lightbulb illuminates over my head.

When I’m excited or scared it’s the worst. If I’m scared my legs give out and shake and my arms start tingling. If I’m excited it’s just my arms. Sometimes it’s random stuff. My roommate did a really good job backing into a parking spot a week or so ago and watching the lines on the screen match up evenly made my arms flop because it was so satisfying. Stuff like that has happened for years and years and years and it just never registered to me that it was abnormal. Also I should’ve known a long time ago that something was a little strange after I kept falling asleep at loud parties and gatherings. You learn something new every day I guess lmao

I’m 26F and was diagnosed with hypersomnia back in March. My sleep doctor also suspects I have narcolepsy, but I’ll need to be tested again, possibly in a year.
I was first put on modafinil 100 mg, which barely did anything, so he bumped me up to 200 mg once a day in the morning. That helped a little, but not a ton. He then added Adderall IR 10 mg twice a day. That actually helped quite a bit, aside from the afternoon crash. However, as soon as I took my second dose, I felt fine again.

That combination made me feel about 50% better. Not 100% better, but still a huge improvement compared to being on no medication at all. I stayed on that combination for about four months because my doctor wanted to give it six months before making any more changes.

Then, out of the blue, I got sick with a really bad cold that lasted an entire month. Toward the end of it, my medications completely stopped working, and my symptoms became significantly worse. I was NOT doing well. I could barely function. It got so bad that I couldn’t work or drive.

After doing some research, I found that being sick can sometimes affect how well medications work. My doctor ended up taking me off both medications and switching me to Ritalin IR 10 mg three times a day.

I’ve been on Ritalin for about a month now, and initially, I felt like it was helping a little compared to the previous combination. My doctor told me I could take two or three tablets in the morning if needed. However, I feel like even three tablets barely make a difference, and the effects only last about two hours. Obviously, I can’t keep taking three tablets every two hours throughout the day.

Even this week I’m at a major company meeting where it’s a work session all day. I survived the morning and started crashing. Took another dose and felt no different. On a major crash and feel like I want to punch someone hahah. And feel like I’m going to pass out during presentations!!

I tried calling my doctor’s office, but his next available appointment isn’t for another month and a half. To make matters worse, he’s not even in the office this week, so they told me he might be able to call me next week.
I’m really just looking for advice from anyone who’s been through something similar or has experienced medications suddenly becoming less effective.

Like I said, I was only diagnosed nine months ago, so I’m still pretty new to this whole journey, but man, it’s been a roller coaster!

I’d love to hear from people who have finally found something that works for them, what their experiences have been like, or even just hear some rants from others dealing with similar struggles.

Ugh, what a pain it is to deal with hypersomnia and possible narcolepsy. And on top of all that, just trying to get a dang doctor’s appointment! 😩

If I simply stay still long enough, I will sleep and I will dream. My family rolls with laughter at photos of our vacation together because i'm asleep in all but one of the photos. I once fell asleep mid-sip, mug in my mouth while drinking a coffee in a crowded cafeteria. I look forward to going to bed at night because I have fantastic dreams before I fall asleep. I often enjoy them, even the frightening ones. But not the ones with loud sounds or startling movements.

So I'm busy and neurotic, right?

My GP sent me to a sleep doctor because they could not explain why I'm dead tired despite a desk job, no strenuous hobby, and no caregiver responsibilities. Sleep apnea maybe?

The first thing the sleep doctor said following the intake interview is "You're not crazy"

The second thing they said was "I see no indications of sleep apnea". My shoulders slumped in expectation of the dreaded "Lose Weight Exercise And Eat Healthy"

Instead they said "These are all symptoms of narcolepsy"

Narcolepsy had never crossed my mind.

Can anyone tell me what the multiphasic test is like? I know I will go to a lab, sleep at night and then again during the day. I don't know if I'm to be hooked up to wires or something like that?

TBH i'm looking forward to the prospect of a entire day with naps.

I just got rejected for Disability, and really wondering if I'll be able to survive this. I can't afford my narcolepsy medication ($300 a month is insane, I only get $330 a month), and I just received my ODSP rejection letter tonight. So much for getting my own apartment, or being able to afford clothes and groceries.

I can't stay awake long enough to hold a job, I had to drop out of school because I couldn't even stay awake for a full class. I'm planning to go in for the internal review and appeal tomorrow but I think I've hit my all-time low. I don't know what to do.

Everyone around me I reach out to is just telling me to get a job. If it were that easy, I'd have one already.

Everyone talks about insomnia and sleep deficiency, but no one really talks about how difficult it is when you have hypersomnia. I don't wanna sleep, but my body is too tired to function. And when I listen to my body and go to sleep, I sleep for 4-5 hours straight(even in the afternoon), and when I wake up, I'm still tired and exhausted. That means I can't focus, and I will forget stuff easily. And then my parents come and literally blame ME for having hypersomnia. And when I tell them I really didn't mean to sleep, they'll scold me for backtalk. It's not like I wanted to have hypersomnia.

hi everyone,

i was recently dx with narcolepsy type 2, and I am struggling. I’m 24, applying to medical school and it feels like my symptoms are just getting worse.

im sleeping 12+ hours multiple times per week and am getting into work late regularly. its not that im not trying to wake up, its just so difficult to get out of bed. I’ve tried alarmy (& memory/math problems to turn of alarms), sunrise clock, & recently a physical alarm clock that runs away from you. No matter what after I turn off the alarm I IMMEDIATELY fall back asleep, like my limbs are so heavy I can’t move.

just got a warning from my job about the tardiness, and am freaking out a little. My surpervisor knows about my diagnosis, but there’s been no official meeting/accommodations talk. I asked a few weeks ago about potentially having multiple breaks a day if it’s slow (using PTO/staying late until I hit that 8 hr mark) but haven’t heard anything back. feel like I have a good, casual relationship with my supervisors so am hesitant to call a formal meeting. Plus just generally anxious about it (& everything). I work in healthcare so you’d think they’d be understanding, but I’m getting the sense from this subreddit that isn’t usually the case.

im currently on armodafinil, after moving up from modafinil. helps a little (i yawn less) but aside from that doesn’t do much but prompt horrific dizziness spells. I know there are more options but worried about other meds/conditions conflicting with their use. @ next appt going to discuss potential ADHD meds since I know that’s the next line of treatment.

I need (1) advice about how to get to work on time. landlord doesn’t allow animals, but considering reaching out to them about getting a service animal that will wake me up in the morning. would prefer cat (more independent if I’m gone at work/school) but can get dog if necessary.

(2) not to be overdramatic, but does it get better? My symptoms seemed to just be getting worse and I don’t know how I’m supposed to work or go to school or eventually be a doctor. being awake just hurts so fucking bad. i keep mourning the person I would be if I could function on 8 hours of sleep like everybody else.

xoxo,

a very sad and sleepy girl

I’ve been dealing with narcolepsy and cataplexy for more than a decade… why didn’t i go after proper treatment?! My parents, my parents always said that there’s nothing wrong with me and didn’t help me with getting tested and diagnosed… now in my mid twenties, my only problem is that I can’t afford the tests!!! Because of economic inflation, the whole pharmaceutical and healthcare industry is a mess in Iran, especially for people with certain medical issues!!! My parents can afford the tests, but they simply see it to be unnecessary, the amount of ignorance toward my issue is destroying me!!!
I have consulted with a neurologists, they had no doubt about me having narcolepsy, yet they don’t have the permission to put me on drugs without the tests!!!
Until this day I cry out of rage because my middle eastern mom wakes me up by force, or scolds me for being apparently lazy!!! And since I had enough, I have to sell jewelry to afford the tests!!!
And one more thing, yesterday I heard my mom talking to my aunt and nagging about my sleep problems, and my aunts said "when does she want to grow up and stop bringing up excuses!!!" That had me crying in bed!!!
Just wanted to say it, I’m pretty sure that there are a lot of people dealing with this as well, what did you do, please tell me something to calm me down!!!

I got dignosed with NT2 back in Febuary of this year and started Lumryz a few months ago and have totally loved getting to take it every night and knock out, but maybe a little too much. When I got my NT2 dignosis I kind of thought that this whole time my depression was just misdignosed NT2 but recently even with all the daytime (IR Adderal and Sunosi) and nightime meds, when I wake up I still want to go back to sleep. Some of it is lingering sleepiness and some of it is just the Lumryz is amazing, I have just so enjoyed the uncomplicatness of taking it and knocking out. I just have recently found myself waking up and the first though I have is I cant wait to take it again to go back to sleep, which honestly has been a bit scary for me. I would love to just be able to wake up and want to continue with my day.

Has anyone else had a similar experience? I have seen some people get worse depression/anxiety because of oxybates so could that be a part of that? Or is my dose maybe too low (7.5 mg) and a higher dose might make me less sleepy? I appreciate any advice! I am just a bit nervous to talk to my sleep doc about it because I am worried they will say its a depression thing. And side note: does anyone else have a hard time juggling a prescriber for mental health meds and sleep? With all the overlap its been so frustrating feeling jerked around by changes with both meds especially when one changes one med that interacts with another.

I like to describe it as molasses 😜 There was a short period of time where I had to stop taking my Adderall in preparation for the tilt table test, so when I'd go to work & my assistants would ask me how I was, I'd just say "the molasses is extra thick today" 😅

Hi. This is my first post. Joined yesterday for help with Xyrem. Ive been on it for 22 nights and my sleep has been awful. I am giving it time for titrating, but the tremors, hands, legs and voice shaking are awful. I was on xyrem ten years ago, but stopped because I had cancer and it was too much at the time. I called the tremors panic then, but its not panic, bc my mind is calm, but my body sure makes me look like I am nervous, anxious, etc. I saw yesterday that someone recommended (thank you) eating bananas, drinking electrolytes, taking magnesium. I did that yesterday and today and it takes the edge off, but my hands are still shaking. It goes away by evening. Does this go away after adjusting to it? Any other suggestions to lower it? can someone explain what the gaba-dopamine rebound is and if this is a terrible thing for my body to go through daily? thank you!!!

Here are some things that I’ve noticed:
- greasy/oily hair and face
- incredibly strong fingernails that grow very quickly
- weight loss
- feeling well rested for the first time
- having a normal appetite for the first time
- developed debilitating (likely already underlying) anxiety and depression and started lexapro
- toenail fungus present for years finally disappeared

What are some things y’all have noticed on your sodium oxybate journey?

I suffer pretty severe symptoms and struggle to do tasks to take care of myself(hygiene, errands, cooking, etc.) I really have to rely heavily on my support system. I’m so blessed to have people who care about me, but I just feel so massively, anxious and guilty and ashamed most days.

I think they may be under the impression that as time goes on my condition will get better, and I’ll learn how to manage it enough to get a regular full-time job and live someone normal life, but I don’t know that I’ll ever really be able to hit those milestones. I’ve been in a lot of environments where I wasn’t able to be disabled so I usually mask my symptoms and accommodate in silence, but that’s so taxing. I want to just let myself exist as is without having to hide anything to make other people feel comfortable, but I worry they’ll view me as a failure and leech.

I hope they understand that when I say that I can’t do these things I’m not saying it to be defeatist or am self-sabotaging because I don’t wanna try. I’ve desperately been trying to push through and manage a “normal” life and ruining my health by doing so. I can barely work 20 hours a week without falling collapsing. There is so much grief I have to process too associated with the life I thought I was going to live versus what I’m currently experiencing. I’m receiving counseling. I am medicated. I’m also on a waitlist to get with a caseworker to sort out housing and disability claims because I also have ADHD and anxiety disorder.

I’m not giving up on my life. It’s the opposite actually, but fully allowing myself to drop the farce and intentionally choosing not to mask is terrifying. I am trying my absolute hardest to survive. I know that better than anyone, but I worry that my loved ones won’t and are going to abandon me once they realize my condition itself is not going to improve. I really can’t do this alone. The only thing I can really hope for is that I receive extra support so I can survive and possibly live a higher quality of life. Does anybody else struggle with this or feel this way? How do you manage?

I've been having a issue lately (a few months) where any time I am stressed I fall asleep. This happens when I'm doing homework at the table, during state testing, whenever I'm anxious ext.

Whenever I'm trying to accomplish any task that takes mental energy while I'm sitting down, I'll either feel myself falling asleep and not be able to stop myself or I'll just wake up a few minutes later confused.

Sometimes I'll have 'stress naps' where I'll sleep for 6+ hours midday by accident because every time I wake up, I'm stressed again (and usually even more than beforehand because I've wasted so much time being asleep on accident) and I just fall back asleep... over and over.

It's becoming a huge burden on my life and I'm not sure what to do. I don't think this is narcolepsy as far as I know, but I just want to know if anyone else has this experience, and how these sleep attacks can be managed if possible.

(Just to be clear I'm not seeking a diagnosis of any sort, I guess this is kind of just a vent and I don't know anyone else who would understand.)

So I've been like extremely sensitive to the cold since I was like 9 years old. I've started having strong Narcolepsy symptoms since I was 13/14. I've finally got diagnosed at 17 years old. And I've read some research that heat sensitivity can be connected to narcolepsy. Does that apply to cold too?

To be more specific about the sensitivity: at the slightest breeze I freeze while others feel normal. At the normal type of cold for other people, I tremble so strongly, it looks like I'm having a seizure while standing up. My lips get blue sooo quickly and I need one or two blankets in the summer (four during autumn or in the winter).

Can anyone relate or does anyone know of it being connected to narcolepsy?

Anyone else with no social life these days? I can barely muster the energy to see immediate family a couple times a month. Besides that, I text and maybe send some voice messages to old friends, but I don't have any real social life. Just too damn sleepy/fatigued all the time.

Not looking for suggestions or practical advice. Just some mutual commiseration.

Hi all,

I was just wondering what everyone eats when their narcolepsy is at its worst?

I’m very lucky to live with my partner who is very supportive with cooking, but days alone I really struggle to workout what to eat. Fast food/microwave meals are better than no food at all but make me feel gross afterwards.