Anyone with Narcolepsy Losing Memory?

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.

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.

I've spent 100s of hours reading about neurology, mostly the autonomic nervous system. Mostly serious websites, like NIH, Mayo, Cleveland Clinic, Johns Hopkins, Science Direct, Lancet, and so on. I don't get the science, so I jump from the summary to the discussion/conclusion in each article. But let me share with you one thing I've discovered: neurology remains in its infancy. Orexin was discovered by 2 teams (the other naming it hypocretin) in 1996. On 7/13/23, a Wash Post story reported that dendritic cells, a prominent part of the immune system, were found to have an electric charge, supportive of their function in the peripheral nervous system. On 3/18/23 in the NY Times, a Johns Hopkins med school neuroscientist, 24 mos out from a diagnosis of an inoperable tumor on his heart wall (at which time he was given 6-18 mos to live), reported that his tumor was static or shrinking, presumably due to innervation--which normally accelerates tumor growth!

B/L, if we keep our scientific ignorance in the front of our (in my case, mildly cognitive impaired!) mind, we can share in the voyage of discovery, as each of us is experiencing his or her unique neurodivergence and each of us is looking only for what works for us, not what can be replicated in clinical studies involving 100s or 1000s (but sometimes only a dozen or so) of patients.

More to the point, Sleep is governed by at least 2 cycles: circadian (melatonin) and homeostatic (adenosine). Yale has a good discussion of these cycles: the former is the process C cycle and the latter is the process S cycle. https://medicine.yale.edu/intmed/pulmonary/clinical/excellence/sleep-medicine/national-sleep-week/good-sleep-recipe/

Your absolutely right--other neurotransmitters and hormones play crucial roles in sleep. And you'll likely never be able to eliminate any of them as drivers of your sleep/nap disorder(s)! I have reasons to pursue adenosine due to my radical response to strenuous exertion, my waking at 1 am totally alert almost every morning, the possible role of adenosine and adenosine triphosphate in my collapse, sudden recovery of core strength 1 yr later, and weird misfiring of my electrolytes and fluid homeostasis 6 wks later (no big deal--vertigo for an evening).

I don't discount melatonin, so I avoid blue lights from mid-afternoon on, and sleep in the dark. But lurking in the back of my mind is how can my dogs sleep for random hours, day or night, regardless of lighting and, I'd guess, melatonin levels? I can almost match their enviable sleep latency, but I envy their intact autonomic nervous systems. I have 4 Rhodesian Ridgebacks, which have among the highest prey drives among dogs and, like bull sharks, have little to fear in terms of predation, So, they are in constant rest-and-relax/digest state, ever vigilant to spike into a fight-or-flee (always fight, be warned) state--respectively, parasympathetic nervous system vs sympathetic nervous system dominance. My guess is US neurology is screwed up, at bottom, my way too much left brain/SNS and way too little right brain/PNS. But what could I know?

Good luck, and remember everything is a rule-out hypothesis until you find something(s) that work(s), or your condition resolves at the same time that you're trying something!

I think I know how you feel, and thank you very much for your posts. It's very hard for us amateurs to really get down to causation from correlation in this area. I have explored the ideas about how science becomes knowledge as part of my Philosophy PhD dissertation on the justification for valid scientific statements. That made me even more skeptical than the skeptic I already was. Can't watch those TV ads!

I'm trying to find my way much like you are.

Your statement "remember everything is a rule-out hypothesis until you find something(s) that work(s), or your condition resolves at the same time that you're trying something" really isn't even tough enough in my view. Temporal correlation is still correlation. For me the question is "what is the cause of my symptoms in my particular case?" Not "what causes these types of symptoms?" The former is way harder, but I'm a lot more likely to trust it.

TTYL

You're absolutely right. We amateurs CAN'T get to causation; we must stop at correlation. But that's ok because we're not looking for universal truths. We're looking only for what works for each of us.

In a long legal career, I always tended toward the inductive--get the facts and work my way up to principles, if I even got to principles. That's what I'm doing now. Collecting and documenting facts, searching for possible correlations, researching possible relationships, controlling variables and trying things--then repeat.

A grand adventure (as I'm retired)! I'm on my 2d consecutive night of 5+2 hrs sleep--and I have NO idea why, except (there's always an "except") for the introduction of very modest exercise late in the day, supplementing my normal allotment of strenuous exercise early in the day.

I am 77 years old and also have difficulty with working memory.

I have always had a good memory and I am very depressed about this. What I do I have notes to remind me in the house to remind me of what I need to do .. As I get confused about which day it is - the night before I leave a note on my kitchen bench the night before to remind me as an example that it" Monday today" and I change the day daily as appropriate

I feel for you. Notes everywhere.

I am 80 years old and have been taking Temazapam for sleep for at least 15 years. I tried once before to quit, but did not succeed. Does anyone have advice as to that best way to taper off this horrible sleeping medication?

I am trying to find out what is causing my head pain. It started the middle of June this year. I woke up with it, and did not "getup". All day. My headache stayed the next day. I stayed in bed with this very unusual very bad pain in the top of my head! My natural blinking is different, just bothersome, not "painful", just not normal.. It is hard to describe.
The third day, I made myself get up and called my PCP. She set up a CT scan and then an MRI. Guess what? Nothing showed up abnormal in these tests. WOW!!!
Now, my memory is a BIG problem, and is getting worse....yet nothing shows.
The pain is still there. Also, more confusion in my everyday routine.
I must get up from a chair very slowly., or it will create more head pain. The pain is there even when I wake up in the morning.
What can be the cause of this? I eat well. I exercise. I am of normal weight.
Hmmm. I have taken different sleeping pills for 23 years. Of course I tried NOT taking the pills. Fine, I don't sleep, and the next night...same thing. Then I am almost "out of it"
I need to do something more! What??
My sleep drug now is Zolpidem. Anybody with a different GOOD sleep aid? Maybe it's that?? Years ago my OBGYN kept me on Prempro for 6 years. Every time I asked to be taken off, the Doctor's response was, " My wife takes it, isn't that good enough for you?" Yet year 7 he called and said "DO NOT take another pill. Like a dope I followed his instruction. Is that the cause of no sleep? Should have been gradual??
I have waited months to see a Neurologist. The Friday before the Monday appointment I was called to cancel my appointment. No explanation. Months to get a new appointment....now I need to see the intermediary nurse first (again). Problem is, I was told by one of my specialty doctors that there are NO GOOD Neurologists in my town of 125,000? I want to try a different sleeping pill. It is the only idea I have left. What has anyone else tried?? I would love some feedback!! Thanks for reading my tale of woe.

If you're only getting these headaches during the night and it's waking you up you might have hypnic headache. Also called Alarm Clock headaches. Check out that title in this Mayo Clinic site. It happened to me when I was 65.