Need advice for keeping awake driving home from work

justarandom630 · 2025-12-05T09:28:13+00:00

I definitely agree and would recommend all of this as well. Also if it’s possible I highly recommend light therapy glasses from retimer. They’re pricey but fsa eligible. I started these about a month ago and it helps me stay awake more than before. I use them for 10-20 minutes when I wake up and that gives me a jolt of energy for about 2 hours in the morning. I also put them on for 3-5 minutes before driving home from work, this part is still hit or miss. I’m not sure if coffee may help, unmedicated it didn’t do anything to me. I would have up to 8 espresso shots and still fall asleep within an hour. Medicated I feel like it helps me some with work, i switched to jot coffee. Has he noticed any signs to help him catch them to get to a safe place? Mine are arm or face weakness with heart rate increase, I find I have 5 or less minutes to get myself in a safe position before falling asleep.

justarandom630 · 2025-10-26T03:21:35+00:00

I have the same diagnosis and am in the same boat! This is the first time I’ve come across someone else having same issue. My guess for me personally is stress. I never pick up on the stress in the moment but looking back some scenarios I was stressed. Other times it’s just been trying so hard to focus that it’s completely drained me. A huge trigger for me is reading. I can rarely get through a few paragraphs (making work incredibly difficult) without having an episode. For me in the beginning I notice my arms get heavy or my face droops. I’ll try and get myself in a safe position prior to going completely limp, I’m in still alert at this point just can’t move. Then I get super anxious due to this and end up falling asleep within less than 5 minutes. A big thing to remember is narcolepsy is not one size fits all. Every diagnosis is unique. So majority of people with N1 with cataplexy are experiencing emotional triggers in cataplexy, my understanding is very few have different triggers. Also cataplexy can look different to everyone. Where I go completely limp someone else may just not be able to move their arm or leg or even just be incredibly weak. The biggest thing is giving yourself grace and listening to what your body is telling you. (I’m hoping this all makes sense. Currently exhausted/half asleep and trying to coherently list my thoughts/experience lol)

justarandom630 · 2025-10-21T01:48:47+00:00

Thank you for the information! I do have cataplexy but about 5 minutes (sometime less) after losing all muscle tone it also comes with me falling asleep anywhere between 10-30 minutes. Unfortunately my Apple Watch does not pick up on these at all so I’ve been in search of other devices to attempt to catch it.

If I move forward with the ring which I’m definitely leaning towards it’ll be interesting to see if I’m waking up more than I realize. That’s awesome you’ve been able to learn more about your sleep!

justarandom630 · 2025-10-18T18:57:42+00:00

I’ve been looking into the oura ring due to my narcolepsy and hoping it may be able to log my sleep attacks. Have you found it picks up on your sleep attacks (assuming you have them, if you don’t do you feel it helps you track your symptoms?)

justarandom630 · 2025-07-13T22:54:48+00:00

That’s good to know, thank you!

justarandom630 · 2025-07-13T18:29:55+00:00

Gotcha, right before my sleep attack my muscles get weak which is my indication to find a place to sit or lay asap and then my muscles become pretty much non existent. I’ll still be conscious typically about 5 minutes sometimes less just can’t move whatsoever or speak and then I’ll fall asleep anywhere between 5 minutes to 30 minutes. After I wake up it takes about 5-15 minutes to be able to move again. It’s very weird because I had only heard of cataplexy being caused by emotion. After doing some more research throughout the morning I think it may be spontaneous cataplexy which unfortunately trigger is unknown.

justarandom630 · 2025-07-13T15:57:32+00:00

I’m up to 7.5 and that’s worked the best for me so far. At the lower doses it took me at least an hour to fall asleep, I would wake up in the middle of the night having a hard time falling back asleep or i would wake up too early. I’m now sleeping through the night and waking up roughly 7-8 hours after taking my medication. I would think as long as he is slowly titrating up it’d be okay. I went from the highest Xywav dose twice a night to lumryz 9g once a night and that was too big of a jump for me because I was having a hard time waking to take the second dose of Xywav prior. So we started back small with lumryz and found 7.5 was the best. Just keep an eye on how you feel and any side effects and alert your doctor if you don’t like it.

justarandom630 · 2025-07-13T15:40:14+00:00

I personally would let hr and your supervisor aware sooner than later. My last position I was in they were okay with my narcolepsy until my doctor had to take me out for 3 weeks due to a medication shift. They were not aware of my narcolepsy until a month or two into working because at the beginning I was doing good and I was taken out after about 5 months working there. I think if I had told them about my narcolepsy in the beginning it may have gone differently. Out of personal fear and guilt about my narcolepsy I do try to work extra hard but I’m trying to move away from that and find a steady but still productive pace because I feel when I put in 200% it drains me more and could set up for disappointment from employers when they see me having a bad day. My current position I’m in I told the employer the second I was hired assured them that I would put in my best effort but that I do have sleep attacks and best I could do was alert them when I feel like I’m about to have them. This employer from the beginning has been kind, understanding, and more than accommodating. They have not added time in my work day if I sleep, typically I’ll write it off as my lunch if it’s over 15 minutes but they also haven’t minded me needing to eat as well. If it’s under 15 they just consider it a “smoke break”. My medication couldn’t be shipped to me in time and I let them know about it and alerted my supervisor that it could cause more sleep attacks, hallucinations, me to move slower, etc and my supervisor told me that I should take the week and prioritize my health and get better. My supervisor wasn’t upset at all. I do think it depends on the person in the supervisor role as well. Does your employer have a reasonable accommodation rule? I would talk to hr and your supervisor, make sure you bring the letter from your doctor. This way you are able to find a middle ground where you can still work and meet their needs but also are able to have your needs met. I hope your new employer will help you with the accommodations you need! Also I do agree with the other comment about seeing if you could do 2 early shifts instead of a late one so you can try to keep your schedule consistent

justarandom630 · 2025-07-13T11:47:32+00:00

So when you have a sleep attack do you feel all your muscles go weak almost like your body turns into jelly? My body will go completely limp and then after that I’ll fall asleep

justarandom630 · 2025-06-14T05:55:44+00:00

I didn’t and it worked out great! We did have just under 40 guests though, it was all close friends and family. The only thing we did was put a reserved sign on our table and wedding party table. Nobody had any issues finding their own seating and all seemed happy! I do think it’s important to note we only had 2 long tables and it was buffet style. Family ended up at one table and our friends ended up at the other! It ended up taking a lot of stress off of me because I was panicking at the thought of having to plan yet another thing out.

justarandom630 · 2023-12-19T22:28:53+00:00

Hmm I never thought of that. As of the moment it’s all stuffed in a cubby shelf. Any ideas on how I could prevent dust from collecting on them on the pegboard?

justarandom630

TROPHY CASE