Reply To: Can't keep a job bc I can't wake up

I absolutely also feel your pain on this. Personally, this has been the most frustrating aspect of narcolepsy for me.

I’ve tried everything I can to wake up in the mornings, and no matter what, it’s extremely difficult to do so. I have a convoluted morning ritual and still don’t always manage to wake up when I’m supposed to (or want/need to).

Ultimately, the best thing that works for me is my partner – and even this isn’t always guaranteed to work! I’ve advised him no matter what, he MUST get me up in the morning and not let me lie or sit down until I’m fully awake (as much as I can be as a PWN). We have an understanding that no matter what I say to him, he won’t take it to heart as I’m apparently quite grumpy when he tries to wake me. (of course, I don’t remember any of it)

Other than that, things that are helpful are:

– setting multiple alarms at staggered time points
– alarms in different locations to force yourself to walk to another room
– alarms with different noises (one radio, one traditional beep-beep, one with a music track, and so on)
– pills with a glass of water ready to be taken ASAP
– taking the pills when the first alarm goes off – even if I fall back asleep, give the tablets a headstart to help me wake up for the next alarm
– one of those high intensity lights to really illuminate the bedroom (ideally as part of an alarm or on a timer so it will turn on regardless of what you’re doing)

I don’t know what the regulations in the US are (assuming you’re US-based), but is there “reasonable adjustment” disability/accessibility legislation, and is a staggered work day considered one such adjustment? My employer has been really understanding and allows me to start later and finish later under the “reasonable adjustment” allowance for disabled employees.

Hope you’ll be able to find a routine that helps! I’m still trying to perfect mine as well!

Reply To: Do you have a great doctor? Thank them!

I hear that! My first sleep doc told me I just needed to lose weight and was very condescending. I live in a rural area so I didnt want to mess up what could be the only doc nearby who could help me. He joked about Narcolepsy my first appointment but never said or did anything with it again. He even refused to look at my journals and CPAP machine printouts. 1.5 years later I told my Primary I cant live like I was living and could she set me up with a new sleep study, and she did (hospital and clinic are 250 miles away)…. and guess what- they realized I had a problem and called me back for an MSLT right away. I got the diagnosis at the follow up and it has been great (not perfect, but better) because they didnt see me as just the person I am now- and I am sooooooo thankful! So many docs helped me get here, so many to thank, especially my Primary!

Reply To: Xyrem to treat narcolepsy without cataplexy

I have used it and it is the ONLY thing that keeps me asleep longer than an hour. I get almost no slow-wave sleep and very little REM without it. I just move in and out of sleep all night. So its keeping me asleep, which gives me deeper sleep (I dream 2-3 times a night now). Im very lucky to live in the US! My life would be shite without Xyrem and armodafinil (and other things).

Reply To: FMLA?

When you can, get it. My boss is great, but it helps with the higher-ups who dont know me, too. It gives me security and takes away the guilt of showing up late or taking off to see the doc. (I usually use all 10 days off I get a year for doctor appointments and sick days, mostly doctor appointments lol)

Reply To: Worth getting formal diagnosis?

I would say that its worth it. Its changed my life to get it done and be able to live something close to a normal life. With or without it, life will be full of work dealing with the Narcolepsy and it will suck. At least with a diagnosis things will be available that weren’t… like FMLA protection and meds like Xyrem. There are going to be bad situations, it is inherent in any system that things get messed up sometimes, but its not a reason to stay away from something that could be good. Get the MSLT, use your CPAP, and trust the science. I had no belief that I had Narcolepsy, during the MSLT I thought I failed it, but the results were true- 1 SOREM and every nap hit sleep within 20 minutes, all but the last one in 5 minutes or less. You don’t know… until you know.

Reply To: Narcoleptic Sleep & Dreaming

I do feel crappy in the morning and am very happy that my doc has kept me on armodafinil. I also use caffeine when necessary.
I don’t have lucid dreams, but my dreams are crazy ridiculous. I have them 2 or 3 times a night, and thankfully they dont follow me far into the waking world. I have dreams that involve death, rape, murder, and not the action-adventure/ cheer the hero kind. But I take it as an indication I’ve gotten some sleep because I used to get no slow-wave sleep and little REM sleep, just going in and out all night long.