I'm so sorry. People shouldn't have to miss out on important times in life when they don't have too. It's really terrible what's going on right now and how things have gone from one extreme to the other. The night my mom died, I sat in the ER with her. We were talking, she was making jokes, laughing so it didn't occur to me it would be her last night on earth. She was being admitted and wanted some things from home. My meds were wearing off so I headed home instead of taking another dose. I would've stayed until she was settled in her room if it wasn't for that. She died a few minutes after I left, alone because I wouldn't take an extra dose. It about destroyed me. Now if I want to do something or drive 240 miles to see me kids I take the dosage that works. I've been on them 30 years, I'm prescribed 7.5 mgs hydrocodone 3x a day, still. My Dr is so worried he'll get in hot water if he increases my meds any more, he's not wrong to worry. It takes 10 mgs to stay semi functioning and 15 to be fully awake and functioning to be able to drive safely.. Really, it's not a lot considering it's been 30 yrs. I skip doses and days, I save todays to live tomorrow. I'm doing what I need to do to have some days with the energy to live some life. I am choosing to do what it takes to be able to do that. I do not consider doing what I have too to spend time with my kids or a day out actually living to be abusing medication. My Dr agrees my medication isn't near adequate and gets upset himself over the current situation, he feels terrible and been nearly in tears over how much my life has declined because of it.

I think I had type 2 narcolepsy, like you, no cataplexy. I found an interesting article on the NIH site published in 2019 by 2 research physicians at Harvard and 2 at Rush in Chicago. 11 pp on type 1, which I dutifully read, and then an admission that we don't know much about type 2, maybe less orexin rather than no orexin. So, I never bothered pursing type 2 with my neurologists, who didn't seem eager to jump into type 2 either!

I found mild stimulation helped. When my morning narco nap would hit, after breakfast, I was in a comfortable chair in a warm family room. I switched to a hard, cold outdoor chair in a bright sun room. When the afternoon narco nap would hit, I'd take a dip in the pool, even when the water was cold. In a few wks, the narco naps disappeared.

I had narco naps for a yr following some strange neuro collapse that has left me with dysautonomia (but no painful neuropathy!). Vivid, weird dreams before I was fully asleep. Alert and refreshed on wakening, even tho the nap was only 5 mins! Anyhow, after the narco naps disappeared, a few mos later, my overall condition had improved enough to resume strenuous physical activity. Almost immediately, naps recurred, but not narco naps!

I have naps now only right after--rarely, during--strenuous exercise. Not narco naps because no dreams and longer. Given my sleeping issues, my guess is I'm not making or using adenosine right, which builds during waking hours. The idea is to wake up with no adenosine so as to be alert and allow it to build during the day, as higher levels make you drowsy. I coffee up in the morning and fight off the morning nap, but the post-exercise nap sneaks up on me, maybe more suddenly than the old narco naps. I sleep in 2 segments each night and hate it when I awaken after the first or second segment alert; that means I ran out of adenosine before I'd reached my goal of 6 hrs sleep. Much better when I wake up groggy like a character on tv waking up. That means that I didn't run out of adenosine, so, if it's after my first sleep segment, I'll sleep again for 2 or 3 hrs and, if it's after my second sleep segment, it means that I prob got 7 hrs total sleep.

here are safe, off-the-shelf adenosine antagonists, like coffee, for morning use, but no similar agonists besides exercise. I'm old and can't do yard work or cycling in the afternoons during the summer, but I just bought a rowing machine and will be giving that a try later in the day.

Good luck.