I'm glad to see that someone other than me experiences the extreme fatigue, and the brain shut down that lets you know you had better lay it down. Atleast every other weekend is like that for me. I don't make commitments on the weekends because that's the only time I have to give my body the rest it needs.

Over time I’ve discovered that my fatigue gets more intense the longer I’m using medications to stay awake. Occasionally my brain lets me know to just not bother taking any that day and….sleep. And sleep. Sometimes for 2 days, just indulge in sleeping. Seems to allow my system (brain?) to somewhat catch up? recharge? replenish? whatever else I seem to have run out of. Then resuming my ‘normal’ narcoleptic days are (more) tolerable and the meds are working again.

I’m glad to hear Lumryz is helping. How many milligrams? I tried it but had to stop due to side effects. I was a week on the 4.5mg, I started the 6mg and next day had to go back to 4.5mg. After a week the doctor stopped the Lumryz.

Before meds and when some meds stopped working, it was literally like being tortured. Every single day felt like three AM. It's better now I'm on Lumryz. Still have EDS, but I do get a chunk of restorative sleep.

I suffered a TBI in 2013 and seemed to have memory issues, and mild cognitive impairment since. I had been a Microbiologist for 25+ years in a hospital. Most will say I don’t appear to be disabled and quite intelligent. But I can’t even do math now and I have multiple “to do lists” I write, re-write daily, I forget medications and sometimes to eat. I seem to struggle with sense of time. I can be on my phone texting for hours and wonder why my hands hurt, I think I’ve been on the phone a much shorter time. My neurologist who isn’t proficient in sleep medicine said it was due to the brain injury. I was diagnosed in 2019 with Narcolepsy 2 with cataplexy. Now he says Narcolepsy can come from a TBI. NOW he saying it’s an autoimmune disease. This disease has robbed me of my life and the hardest struggle has been finding the right doctor/medication.