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Anyone with Narcolepsy Losing Memory?

Sleep Health | Last Active: Sep 27, 2023 | Replies (22)

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@tallyguy

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.

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Replies to "I think I had type 2 narcolepsy, like you, no cataplexy. I found an interesting article..."

I have a question. I wasn't familiar with adenosine until I looked it up just now. Other than the symptoms of being alert or tired, do you have something else that ties your particular adenosine level to to your particular condition of being alert or tired? In other words, it seems possible, to me anyway, that other things could be involved in that connection, and it would be nice to be able to eliminate that possibility.. Ideally it would be great to measure the adenosine level and compare it to symptoms, but that seems unlikely. A quick search of brain neurotransmitters involved in the sleep cycle include norepinephrine, orexin (hypocretin) , acetylcholine, histamine, adrenaline, cortisol, and serotonin (NIH). Way to complicated for me.