r/Narcolepsy • u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy • 1d ago
Advice Request anyone successfully working an office/desk job?
my current job is sat at a desk in an office all day. i plan to become an accountant which will also be office work... i can barely reach the 30 hour mark per week because of my narcolepsy. i end up leaving early because i'm falling asleep at my desk every day and at times i lose control and doze off anyway. i know if i didn't work for family friends, i'd be fired already.
is there any narcoleptic out there managing to work these kind of jobs? i want to be able to work full time... is that even possible for people like us?
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u/ser_pez (N1) Narcolepsy w/ Cataplexy 1d ago
Are you medicated? I work a desk job and while sometimes I have a rough time (especially after lunch) it’s pretty rare for me to nod off at my desk.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
no i'm not medicated yet.. i'm working on that next when i can see my doctor. i have a really mundane and repetitive job so i find my eyes closing and i don't realize and/or i fall asleep and jolt awake because my head falls back. does medicine really help this :/ ? i feel hopeless
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u/ser_pez (N1) Narcolepsy w/ Cataplexy 1d ago
Medicine has been a huge game changer. I started having symptoms in high school and even though I suspect I’m probably only at like 80% of a regular person’s energy level, I can function and live a relatively normal life (working full time at a decent job, hobbies, friends). I know exactly what you mean about jolting awake because your head has fallen back too! Now that really only happens to me on days when I haven’t gotten enough sleep the night before. I’ve developed strategies to deal with it when I am feeling extra tired like drinking really cold water, getting up to walk around if I feel sleepy, caffeine. Sometimes it just comes down to being allowed to take a 20 minute break and nap in my car.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
i often skip my lunch break because i have a bit of this 'guilt for being sleepy ➡️ i don't deserve a break ➡️ i need to overwork myself' thing going on, but letting myself sleep during a lunch break may be what i need to make work manageable, especially until i get some medication.
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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy 1d ago
15 minute naps on my lunch breaks have been life-changing for me in managing my drowsiness and EDS. For context: I am medicated.
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u/Superb-Engineer4091 8h ago
I second this, symptoms started in highschool, barely made it though highschool and college, now working full time desk job (HR). Medicine has been a game changer. Only taking adderall wasn’t enough to stay awake at work though, I had to take sodium oxybate before bed. Since I started that, I’ve only fallen asleep at work 2-3 times over a 4 month period, and I was able to snap out of it pretty quick too. It was not like that before. Before Lumryz it was nearly 5 days a week, sometimes multiple times per day, missing alarms, not making it in, having to leave, etc. I was almost fired but I fixed the issue in time. But it doesn’t mean things are perfect.
So you can try to talk to HR wherever you work about accommodations for having a disability. The accommodations can even be that the attendance policy or hours you work is altered for you.
It’s not fun, it’s a lot of work to do when we’re already exhausted, but once you have a plan and get medicated you’ll be okay.
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u/__Researcher__ 1d ago
I’m on medication but still I doze off while working.
I’m also having severe OSA and other health issues.
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u/zorgabluff (N2) Narcolepsy w/o Cataplexy 1d ago
The medication makes a world of difference (for me at least ymmv)
I usually only need to get coffee once a week now (usually on days where I didn’t sleep well the night before) to keep me going
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u/Pleased_Benny_Boy 1d ago
Nope, had to change job. I need to interact with people and do physical task to stay awake, even tho i'm introverted.
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u/ChronicallyChill93 1d ago
I am. I WFH, and it helps! I’m able to get up and move around when I feel sleepy, which helps me stay awake.
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u/ChronicallyChill93 1d ago
I should add that it isn’t easy. I struggle a lot. It’s just easier than being in an actual office.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy 1d ago
I had this same problem working an office job and now that I’m back in school again it’s just as bad during class as when I was an undergraduate. Nodding off in class is extremely embarrassing and I have to tell my professors to please not call me out in front of everybody (had a teacher do that during my undergrad before I was diagnosed, she said “am I BORING you?!” It was fucking awful because it was uncontrollable.
Only thing that helps me is either my meds or sometime coffee. But the only thing that will really get rid of my mega sleepy feeling is a small nap. Or else it’ll just linger with me all day until I do nap. Which is extremely not ideal when I have a ton of shit to do or have to work. But it’s either I take a small nap or I try to work and do an awful job because my brain is barely working.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
this is so relatable!! i've been falling asleep in school since 10> years old and now i'm falling asleep at work ofc... it will not go away unless i give in and nap! or else i'm struggling to stay awake and my alertness is completely out the window. no one understands how debilitating it really is unless they have it :/
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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy 1d ago
Holy $hit!! So relatable, I have had the same happen to me.
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u/Impeccably-Inconcise 1d ago
I am, but without medication I wouldn’t be able to. Committing to a consistent sleep schedule made a huge difference too but also didn’t happen overnight. My desk job is really repetitive with limited required interaction with other people. Nobody I interact with to do my job is in the same city as me either. Been doing this for 4 years now.
For a while I was working over 40 hrs a week in this job without an issue, but I did have to step back when 10-12 hour days became every day for months on end. I’ve definitely struggled to work 40 hours a week in my life, but not since I’ve been on Xyrem.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
this gives me hope, thank you. i'm not medicated yet, my journey has been long and complicated due to my insurance but hopefully soon i'll get on something and finally be able to function somewhat normally
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u/bunbunbooplesnoot (N2) Narcolepsy w/o Cataplexy 1d ago
I worked as an administrative assistant for about four years, and while medicated (modafinil 200mg twice a day), I was able to do it just fine! Some days were harder than others, and sometimes I'd have to get extra caffeine or get up and walk around in the afternoon, but it was definitely doable. I'd come home and nap for about 45 minutes on bad days, which usually helped.
Now, on days/weeks when my insurance said "Screw you, we're not covering your medication anymore. Try Ritalin or something that won't cost us as much money," I struggled a lot. I'd tell my boss, and thankfully she was understanding, but I'd have to be getting up from my desk every five minutes sometimes so I wouldn't fall asleep. This happened at least five times, and always without warning...God bless my sleep doctor who wrote so many appeals on my behalf 😭.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
thank you for sharing! it sucks having this giant wall to try to navigate with every day, but i hope i can still do the things i want when i get a medicine approved by my insurance (my insurance sucks too 🙃)
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u/bunbunbooplesnoot (N2) Narcolepsy w/o Cataplexy 1d ago
I hope you can get a medication that works for you (and your insurance 😂) too!! It makes such a difference!
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u/Whiskers1996 1d ago
I work in an office. No meds. I make it work. Some weeks are without issues, others I struggle a bit. Overall about the same difficulty as a field job surprisingly.
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u/boy_withacoin 1d ago
I work in medicine in a hospital, so a mix of desk work (documentation) and being on my feet interacting with others (seeing patients). I manage it ok (just modafinil 200 mg daily and a healthy dose of morning/afternoon coffee). Sometimes I need to nod off at my computer for a few minutes, so I do. If your coworkers or boss give you grief about that, maybe your prescriber can give you some kind of documentation saying you might need a siesta at work.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
thank you for your comment! you know, my grandpa wasn't diagnosed with narcolepsy, but he was a doctor and worked all day and he was able to do it because he had his siesta every day 😅 may be in my genes!
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u/Sweetsusie- (N1) Narcolepsy w/ Cataplexy 1d ago
I got an amazing role at a bank customer service centre. I had a horrible time on the phones and even fell asleep on call with a very upset client. My managers knew something was up that was probably medical (had to talk people out of calling ambulances when my cataplexy was acting up on several occasions). This was all pre-diagnosis. I moved to a role that is a non-live messaging service. Even if I fell asleep at my desk multiple times a day, I worked fast and well enough when I was awake that I still met all my targets. My method was “work as hard as possible until passing out, and then try again upon waking up”. At least in this role, if I fell asleep while working on a client’s request, the client wouldn’t know. I think I do have the benefit of being a woman who’s generally quiet and visibly unwell, but trying to push through. If I was a guy or looked rougher aside from looking ill, people may have thought I was on something. Finally got diagnosed and treatment has made it much better
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 1d ago
i'm glad i'm not alone. i feel so dramatic like why is my tiredness so dramatic- why can't i just stay awake. i got all the sleep a newborn baby could need yet i am acting like i have been deprived for 2 months of sleep. i feel a lot of guilt about it, i wish i could control this. the advice to work as hard as possible till i start falling asleep is great. i'm glad you've found something that suits your needs, that's all we can hope for :))
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u/404AwakeNotFound 9h ago
Your body is likely super sleep deprived though for more than 2 months of sleep. All the nights that we sleep that are fragmented, insufficient deep sleep, etc they add up over time so without treatment we can end up just feeling worse and worse as the years go on.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 8h ago
:( exactly. i hate hearing "why are you tired still, you sleep so much" "you shouldn't still be tired" when none of the sleep we get is of any quality and you feel it every day
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u/GeckosInPants 1d ago
My brand of narcolepsy makes me unable to sleep more than 15 minutes at a time, ever. This actually works well with my desk job. Currently I’m WFH, but even before that, I’ve always taken two planned naps of 15 minutes or less. One during lunch. It’s still hard and I need to get up a lot, but it’s doable. If you can find a place, it might help? Car, weather dependent, or lactation rooms, restrooms with a seat…you could get creative. I’m medicated- Lumryz, not sure I could do it without it now that I’m older, but I did in my 20s to early 30s. Staying hydrated, limiting sugar, and exercising regularly are also key for me to function.
I think the key is finding the accommodations you need, asking for them, and having your workplace support you. I wish you all the best, I know it’s a constant, every single minute struggle.
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u/TragicBackstory7 1d ago
I somehow manage but I have IH not narcolepsy so its not as severe for me. I definitely have fallen asleep at my desk more times than I want to but I regularly try to stand and move aroind to keep myself awake. Or I take a nap on my lunch break if im thay exhausted.
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u/camille-gerrick 1d ago
Yes, been working an office/desk job for 20 years. Granted, I didn’t know I had narcolepsy until like 5 years ago, so I never thought that NOT working full time was an option. Adderall and HRT have been a game changer as I enter perimenopause.
My job offers flexible scheduling - like I can vary my start, stop, break, and lunch times each day as long as the time card equals 80 for the two week pay period. But I do have to be in office. No telework. My job also has a mix of independent work at my desk, and moving around to collaborate so that helps keep me alert. I’m definitely not immune to the 2pm slump though.
Luckily I’ve always had reasonable supervisors who never made me file for accommodations.
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u/Admirable-Potato3741 1d ago
I work 5 days a week in a corporate office in business suits. Finding the right medication is important. I also have an accommodation to take a 20-30 minute nap 1-2x a day but I don’t use it much but it’s there for me if I need it. Best of luck!
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u/Azgearhead 22h ago
Nope. I’ve fallen asleep welding while sitting down. Not a chance I could make a desk job work.
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u/DumpsterPuff (IH) Idiopathic Hypersomnia 14h ago
Yep! I'm a medical coder and have been working from home for the past 3 years. At first I thought working from home would make my symptoms worse, but they're so much better honestly. Plus with my job, the hours are flexible; I'm allowed to start as early as 5am or as late as 9:30am, so it's great for when it's summer and I'm generally more symptomatic because my circadian rhythm gets thrown off. Sometimes I'll just clock off in the afternoon, take a long nap, then clock back in again.
I saw in a comment that you said you're unmedicated. Meds will make a BIG difference on whether you'll be able to do an office job.
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u/Cute_Mammoth_2087 (N1) Narcolepsy w/ Cataplexy 8h ago
i'm glad you found something that works for you! i'm definitely working on coming to terms with the fact that working from home will be something i have to do at least partially. as well as having more flexibility discussed with my employer. i've been mourning the fact that i'm not "normal" for a long time. i wish i was apart of the rigid 9-5, monday through friday—despite the accusations of me just being lazy and not wanting to work 🙂 but some of us just can't when our body is unpredictable as hell and constantly changing.
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u/Crampez7 9h ago
my wife has someone at her work who has narcolepsy and he informed the workplace of it and they got him a standing desk. I can see how that might help
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u/Its_Sound 1d ago
I work at a desk 40 hours a week. I had a lot of trouble before medication and would get up and walk around the hall/lobby for a few minutes every so often to help. With medication it’s much better. I still get some intense yearnings to go find a corner to nap in once in a while but I’m not actually nodding off.
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u/Sunlovepixiedust 1d ago
I've worked a desk job unmedicated in the past and often found excuses to get up and get moving. I'd keep something to doodle on for times when i couldn't get up. Otherwise i'd fall asleep all the time, or constantly be fighting sleep attacks. It got pretty bad recently and up until i was diagnosed and medicated. It's absolutely night and day being medicated vs not. Unmedicated, i just can't function at my desk job. Medicated, i can do my job and do it well. If i ever have to go back to being unmedicated i'd probably have to do something very physically active that requires constant moving. Wishing you well!
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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy 1d ago
Desk job full time tax examiner here. I doze off for at least 30 seconds to 4 minutes a day on average. Get FMLA or a medical accommodation if your company provides it, it will protect you and help you keep your job, you don’t have to tell your employer what medical condition you have just that you have a disability. I struggled beyond belief pre-medication and lost many jobs unfairly/ unlawfully due to my N1. I hope that once you get medicated OP you will be more than okay. Personally my worst periods where I find myself potentially falling asleep are after I have lunch. I hope this reassures you that it’s possible to work a desk job full-time with Narcolepsy, Hang in there!!
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u/byte_bot_mother 1d ago
I hate that other people struggle with this - but it’s nice to know I’m not alone. I am an architect - that means mostly tedious computer stuff. I’m medicated - the job would be impossible otherwise. The days when I do site visits or have lively calls are a bit easier. Computer stuff - especially the more tedious & detail oriented stuff - is a major challenge! I had to ask for an accommodation and my bosses have been very kind - between that and the random months the pharmacy is out of meds….im lucky they’re so understanding.
For now I am in the office for 3-4 hours, leave for a nap, then finish the rest of the day at home. It’s still a huge struggle & often feels like a marathon to hit that 40 hour mark, but I’m making it work for now. It’s exasperating to have all energy gone at the end of the day though - I’d give an arm to have more time/energy for life/family/friends/hobbies.
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u/BackgroundDisaster90 (IH) Idiopathic Hypersomnia 1d ago
Are you diagnosed? If so, I would work with your doctor and office to ask for reasonable accommodations. For ideas, visit askjan(.)org. Accommodations can be things such as an in-ear monitor to alert you when you fall asleep, adjustments to the desk (standing desk), nap times, etc.
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u/MarqBarq 23h ago
Everyday. You didn’t share your medicine regimen, but if it’s dialed in, you should be able to have a fantastic career. One of my tricks is a standing desk, and religiously walking around once an hour.
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u/strawberryzephyr_ 20h ago
I used to work in office as an operator for several medical offices in Tx but each of us had a stand-up desk converter. Now I WFH and I can get up and do a squat, stand, whatever really. I do wanna get a walk pad set up at the new place I moved to tho, to get me moving more. I've been full-time but I'm also medicated for day and night.
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u/__aurvandel__ (N1) Narcolepsy w/ Cataplexy 1d ago
I'm a software engineer and make it work. Working from home makes a huge difference. I can go for a walk or take a nap and as long as my work gets done no one cares.