Surprising Symptoms of Narcolepsy

I agree with the unpredictability of symptoms. Sometimes I can drive for several hours without getting sleepy at all, or go all day without needing a nap…and other times I can barely drive 20 minutes before I know I have to pull over somewhere because I feel like I may have a sleep attack, or needing at least 2 naps a day. Interesting thing is there is nothing that I have done differently in those situations that would make me more sleepy.

Surprising was the idea of automatic behaviors, or how they can relate to narcolepsy in contrast to mere inattention or distraction. I think medication helps prevent various automatic behaviors, whatever they may be for a person.
To be deprived of medication I’d been on for 8 yrs left these automatic behaviors more obvious (driving, I would say, missing highway exits I know and meant to take, staring at the exits as I passed them, a few times, in different places).
It was a little like being there and not being there or not fully there. I don’t like it, but that’s what it was like. One of the exits I drove 4 hrs to get to but flew by it without ever seeing it even though I knew it was next... It’s a good thing there are other ways to get to the same place.
Then, maybe unrelated to automatic behaviors but not unrelated to surprising symptoms of narcolepsy--dropping things. I think it was also made worse (more common) after my new doctors refused to prescribe my medication. Usually, dropping things aren’t a big deal, but drop your screwdriver at the top of a 12 ft ladder when you’re putting some finishing touches on something, look down to see it falling, have a thought about having to climb down to get it, but lose your balance, fall off the ladder, and hit the top of a camping trailer, then go ahead and fall 8 ft more to the ground, head-down. I’m glad I lived and didn’t get paralyzed. I could’ve landed on my head and don’t know if I’d be here or be able to type anymore.
It hurt a lot for 3.5 weeks. It’s okay now. They gave me Motrin. Pain doesn’t kill anybody, does it, even if it feels like it? The Motrin didn’t do much, but I needed the pain to teach me what I could do and not do (to heal). It was my teacher for almost a month.
I landed on my chest and left shoulder, tore a pectoral muscle and bruised some ribs. I went to get x-rays to make sure a rib wasn’t jabbing into an organ (that’s what it felt like) when I moved certain ways or tried to use my left arm. All the ER people got a good laugh out of the account before I made the mistake of going through their double doors.
As soon as they laughed about what happened, I should have left without seeing anybody. I should’ve known. I learned it cost me $4500 with health insurance, and they didn’t give me a glass of ice water. It was August. X-rays and a shot of nothing cost separately, so I paid $4500 to sit there and wait for x-ray results. Maybe, they’ll stay in business now.
I won’t go back to an ER unless I’m unconscious and get wheeled in on a stretcher. I have to find another way. At the time, I was in a bind and didn’t know the extent of what was wrong. I needed to know. I’m glad I went, but I learned another lesson about where to get the care that’s necessary. I don’t cost anybody that much to sit and wait for information. I just sat there and waited. $4500. Out of pocket. I don’t want to cry a river. It’s just the facts. It wasn’t my first choice.
I went to an Urgent Care first, but they didn’t have an x-ray technician/radiologist... that day. The lady said to go to an ER 15 min away after I told her what happened or what I did. It would’ve been far cheaper at Urgent Care, I think. I was desperate at the time so I went to the ER. I got a 2 yr payment plan to pay for this one choice I made when I was in need. I’m trying to forget about it and just pay them month to month, so I’ll stop writing about it to help me forget it. It makes me angry, and that doesn’t help anything, and it doesn’t help me pay for it. I can’t tell that getting angry helps with anything or anybody.
So, I guess a sense of balance is in there too with dropping things, in terms of surprising symptoms, at least they were there the first day without medication I’d kind of grown accustomed to taking and... maybe rely on more than I knew.
When we do the same thing (medication) for a long time, then it’s hard to know what it’s doing sometimes.
Best case, it’s working, and a doctor will keep prescribing it. Worst case, I hope you don’t find out, and I hope it’s not worse than falling off a 12 ft ladder. If you fall, then I hope you too land on your chest and shoulder and not your head. Accidents are always “surprising”. It seems there are more without medication. For them, the accidents, the sky’s the limit, or the ground, I don’t know. Anything can happen when an injurious event is an “accident”. Accidents can manifest in any way, anywhere, and any time--because they’re accidents.
Why did I stop taking medication, any reasonable person might ask. It wasn’t my choosing. I had to get a new doctor. She didn’t want to prescribe this medication I’ve been on for 8 yrs (at the instigation of a Sleep MD in another state) in spite of the diagnosis and recognition of some of my history. She referred me to a Sleep MD so she wouldn’t have to prescribe my medication. It sounded logical, so I went to see the new Sleep MD a month later. She wouldn’t prescribe my medication either on that day but wanted me to keep using CPAP every day.
The new Sleep MD instructed me to sleep at least 7 hrs a day for “5 weeks” and then return to see her. I’ve been using CPAP for 8 yrs also, but I was living on 5-6 hrs of sleep a day with it (one of the greatest triumphs in my life because I used to sleep 10-12 hrs routinely--that’s one of the reasons why I had the polysomnography lol, along with sleep paralysis, not remembering talking to people upon waking or turning off many alarms and not remembering it).
She claimed sleeping 7 hrs a day w/the CPAP would clarify whether I needed the medication after all, or it would make her feel better or more justified in prescribing it. It was like conditional because I have mild-to-moderate apnea too. It took a few weeks and a $1000 to get the new CPAP machine she told me to use... for 5 weeks... so I was going to run out of medication anyway... by the time I saw the Sleep MD again.
My new PCP & new Sleep MD practitioners failed to prescribe my medication. It’s not “my” medication. It’s just a medication. It’s all I’ve ever used. If they don’t prescribe it, then it’s not mine even if I need it or something like it. They didn’t want to do it even though a Sleep MD started me on it 8 yrs ago.
So, I decided to see what life was like without it even though I had ten days worth. It was gonna be like 45 days before I could see her again. I was going to have to deal with the reality sooner or later of no medication. Life wasn’t good without it. I hope it’s over soon (life without medication). I don’t even like the medication, but it’s better than nothing, I’ve learned. It is helpful. I know that now. It’s more helpful than I recognized for 8 yrs, probably.
I was put on it because I fell asleep in the neurologist’s office before she saw me for something else, and she sent me to my former Sleep MD because she said people shouldn’t be falling asleep in the doctor’s office. She was right. I was stressed and don’t do well at doctors, I guess. The former Sleep MD concurred with her, and he helped me.
I’m hoping his records make my new doctors more comfortable in treating me. He was great. I didn’t just fall out of the sky yesterday. I’ve been working my treatment for 8 yrs, and my new doctors, one of them a specialist, decided to see what would happen if they chose not to prescribe my medicine. I almost died falling off the ladder. I’m glad I didn’t.
It was not a controlled fall. Once off the ladder, I ricocheted off the camping trailer like a big branch that breaks off a tree, hits something, then crashes down to the ground. It used to be way easier to jump off things or take a big fall when I was a child. I could jump up like nothing happened. It’s not easy anymore. I weigh 200 lbs. It fell like dead weight. When I fell off the ladder, I didn’t jump up off the ground. I was really, really hot. The sun felt enormous, and it seemed to be setting on my face. Even with my eyes closed, everything was red and bright. It was so hot.
The main reason I wanted to get up was to get out of the sun and find a shade. It took a while. Hard is the clay. I didn’t know what all was wrong inside my body from hitting the ground that hard from so high in the air. In time, I did get up and found a shade. I tried to evaluate... the feelings inside my body? To survey the damage. It felt like my shoulder had been run over by a truck or smashed by a trash compactor. That’s all I can say, but I didn’t know what was wrong, and assumed I broke some ribs. I didn’t break any ribs.

It was so stressful to see the new doctors and feel threatened by this prospect of discontinuing medication... I’d taken for 8 yrs that I decided I would stop taking it after I saw the Sleep MD because I didn’t have enough to last 1.5 months until I saw (see) the “new Sleep MD” again. I do that in a few more weeks. I’ve done what she asked. Sleeping a lot is not a problem for me as much as the world or scheduling... or earliness. 7 hrs a day with CPAP? No problem. The only problem is it will have taken 3 months to do it (I’ve already done it for 5 weeks) and to... see her again. I’m going.
I’m mad, but that won’t help me. It makes them not want to treat me. So, I’m going to try to be nice even though they made mistakes. I make them too.
It was the next day (the day after I saw my new Sleep MD and she chose not to prescribe the medication I’ve taken for 8 yrs) I fell of the 12 ft ladder. I don’t think the accident was unrelated to not taking my medication. I think it was very related and even predictable but I couldn’t get across to either of these new doctors what I needed to get across, I guess.
I don’t quite know what to do with new doctors who don’t know you or what you’ve been through, what life is like with and without medication, or what you’ve been doing to help yourself for so many years in treatment. I felt like they (felt like they) needed to break me down (for some inexplicable reason) to see what would happen (like an experiment) so that they would feel more justified in what they do or what they prescribe.
I think it was dangerous to do what they did. At the same time, there’s nothing I could do about it but survive and try to cope until one of them reinvents the wheel and treats some of these problems or symptoms or diagnoses. It’s been a difficult 2.5 months.
My common sense take is when a patient goes to the doctor on blood-pressure medication, and the reading is acceptable, no doctor says, “Let’s take you off your blood pressure medication, come back in 5 weeks after exercising and doing yoga... and we’ll see what it looks like--no negotiation.” No patient goes to the doctor on anti-psychotics, able to converse well enough, for a doctor to say, “Let’s take you off your anti-psychotic medication, come back in 5 weeks. We’ll see how you’re doing.” It sounds irresponsible to me.
Why my new doctors chose this path with me as it relates to sleep disorders, I do not know, particularly the new Sleep MD. It’s her specialty. At this point, I’m just going back to see if she’ll do what she said she would (commit to prescribing my medication so I don’t have to stress about it all the time--I need somebody I can count on to do this thing I can’t do for myself) since I’ve done what she asked me to do (sleep at least 7 hrs a day w/the “new” CPAP).
My old CPAP said “Motor Life Exceeded Contact Provider” because I’ve used it for 6-7 yrs 99% of every day. It helps with crazy physical restlessness during sleep for me even if EDS is pervasive anyway. Sleep’s not restorative even with CPAP. No CPAP leaves me with a sore throat from all the snoring. I don’t like slobbering on myself, so I use it to breathe oxygen and not kick, throw off my pillows, and spin around in bed and stuff. CPAP helps me to hear my alarms going off and remember turning them off if I do or when I do. Some people wake easily. I have never done that.
Last for me, “surprising” symptoms of narcolepsy: sleep talking, which may be another automatic behavior. People always used to tell me I talked to them when they tried to wake me (it took much effort from them and many just gave up trying to do it), I assured them I was getting up, I never did, and sometimes it didn’t make any sense, the sleep-talk, talking about wolves in caves (one report from a friend I remember), or other dream-related images, probably. Absolutely no recollection of these “conversations”. I think in general I was talking to people trying to get them to leave me alone (so I could keep sleeping).

Sometimes, I wonder who’s in there or where all that comes from, you know, like a part of my mind, if there are parts, that I don’t know very well. I don’t like that idea, but I don’t know what else to make of it. I take it they are symptoms not everyone (people with narcolepsy or not) experiences in life. I’m trying to take the good with the bad.
The “vivid dreams” most seem to assume are nightmares, but mine have never been nightmares. I think I could count all the nightmares I ever had on one hand. Usually, the dreams are just wonderful, more real than this, more emotive or emotional than most waking-life, I don’t know, full of feeling, mostly plot-less, and suspenseful because I never know what is going to happen or who is going to show up.
Sure the “people” in the dreams are just the products of my own mind, I’m mostly baffled by total strangers in the dreams. Who are they? Who are they based on? Someone I passed in the street or saw in a cafe? Old friends or classmates, I know who they are if they appear, but total strangers? I don’t know. How does one relate to a total stranger in a dream, being a product of one’s own mind? They’re all relations. The dreams go on.
Lately, I loaned a stranger on a bus my cell-phone and spent all I remember of the dream trying to get my cell phone back from him. I got it. It was my dream-phone, I guess. He just needed to use it but then wouldn’t give it back, and I had to follow him around trying to get it. I had no idea where I was even going on the bus. The stranger hijacked my dream when I loaned him the phone. The whole dream turned into an adventure just trying to get my phone back.
Persistence.
They’ll let you give up, you know, even doctors. Don’t. Keep advocating for yourselves to get what you need to live longer, better, and healthier. Even your new doctors may treat you with suspicion or judge you. They just met you. They may have no idea what to do even if they talk to you or you show them what medicine you’ve taken for 8 yrs. Work through it if it doesn’t kill you. I don’t think... well, if even Sleep MD specialists don’t agree on something, a diagnosis, then they may not agree on what is appropriate treatment for you. All of that affects your day to day life (or even whether you have a life to live). Just keep going and hang in there until... you can’t, I guess.
Sometimes, people make it more difficult than it needs to be, but... maybe that’s what people do sometimes... make life more difficult than it needs to be. I don’t like it, but I try to endure it. I try to prevent it, but I have to endure it if that’s what I have to do. I’m not in control of what these people do (doctors or anybody else).
Doctors are people too. They don’t know everything. Sometimes, they don’t know enough and start discontinuing half a guy’s medications. You can try to tell them. It didn’t work for me. I told them everything they needed to know. Two doctors. So, sign the release for records from old doctors to be shared with the new ones so the new ones get briefed on your history (preferably before you show up 8 yrs into treatment asking for your medication).
I’m thinking old records mean more than anything I can tell them. They don’t really put much into what I said. They were probably trying to be cautious or... I really don’t know what they were doing. I don’t know how to talk to them anymore in a way they can hear me. I tried. It failed. I’m hoping all these records from the last decade will.. give them more confidence in how to help me or feel good about... helping me in a way I can’t help myself (prescribing medication).
The whole situation of being dependent on a doctor for medication is awful. It’s a privilege, but it’s awful too. Treatment is supposed to be empowering in different ways. To be dependent on someone, even a doctor, to do it, is a bitter pill. I went to doctors. They didn’t get it. I’m hoping my old records will speak to them better than I can. Maybe, they’ll understand a great evaluation, diagnostics, and recommendations from a former Sleep MD better than they understood me. If they don’t, then I can’t really go back to them. I’m hoping it’s not all just a dangerous waste of time (without medication).
It sure is sleepy. I don’t think people really understand on the whole... how sleepy or what kind of condition some people are in without medication all the day long. It’s all I knew for 35 yrs so I had nothing to compare my life to. The last 8 yrs have been better with the medication. It’s why I went to the new PCP and the new Sleep MD. I didn’t get it, but a conditional... demand from the new Sleep MD to sleep more and go back in “5 weeks”. That will have taken 3 months by the time it happens. No problem. I wish I could even sleep more than I do but I work full time and drive 1.5 hrs a day to do it.
I was forced to face again what my life is like from day to day without medication, or breaking a therapeutic dose in half as a way to “manage” it before I totally ran out. The half-dose was useless. I couldn’t even take the full dose the first Sleep MD gave me because I talked and wrote too much so I broke them in and I’ve taken that “half” for 8 yrs. It’s half of the half that does no good. I’m glad there are doctors, but some of them seem kind of crazy to me.
Going from a therapeutic dose to nothing led to my fall off the tallest ladder I’ve ever even walked up. So, after I started healing a little and trying to resume “normal” life, I started breaking the remaining pills in half... to stretch them out, because I’d started my “5 weeks” of more sleep, which was not effective but also not zero medication... because I had no other choice.
I don’t know what to tell you. If you find good doctors, then try to keep them. I couldn’t afford to keep mine. I don’t know. They’re not all good, though. They don’t all care. They’re like all people, maybe. That’s life. The world is full of us. So, find good ones and keep going to them if you can. Some really want to help people. Some don’t. Try to find out which ones care and want to help people. It’s a kind of service. Not all of them are into it. It’s possible some of them don’t know what they’re doing. God forbid, but it’s possible. I’m in the process of trying to find out who cares and who wants to help me pay them to help me.
I started writing my doctors (stuff like this) after I fell off the ladder and had to lay around for 3.5 weeks because I couldn’t get up when I sat down or get up when I laid down to sleep... without methodical efforts and an old-man cane I borrowed. I don’t think my new doctors like my correspondence. I don’t recommend writing them like this. Just be nice and talk to them when you can without getting stressed when they’re threatening to deprive you of medication if you need it.
Just do your best. That’s all you can do. I was stressed (because I needed refills) at the new doctors. They don’t know how to interpret that and think you’re a jerk. I don’t know. There’s no reason either of my new doctors should understand what it’s like to be me with or without medication. They have their own agendas until they get more comfortable with you, if they ever do. Giving up won’t help.
Some doctors may not know what it is to rely on medication or to rely on a doctor or several of them. It’s like getting evicted or getting fired (to be deprived of medication one needs because one has to get new doctors).
It’s threatening for a doctor to deprive a patient of medication that’s helpful in different ways. It was threatening to me. I think they misinterpreted my needs for... something else. It only affected me, so I’m going to try to be nice when I go back and not accuse either of them of trying to kill me before I could see them again and show one of them I’ve been sleeping enough on every day for her.
This was all supposed to be about “surprising symptoms” of narcolepsy, and I hope mine weren’t lost in all this rubbish. They’re in here somewhere. Thanks for listening if you could bear to read this.
I have a few “Migraine” and “Allergy” orgs that send emails with questions, but this one is my favorite. I always thought people didn’t understand migraine at all (in terms of what they’re like or the ways beyond “headache” they debilitate people temporarily), but the longer I live the more I think that people may generally understand sleep disorders, narcolepsy included, even less than migraine attacks. They have no idea how incredibly difficult certain processes are that may be quite effortless and natural for many other people, even if it’s just waking up and going about one’s way throughout each day.
I wish life were longer so I could understand more. It takes a long time to understand anything. Experience shows people many things. It’s not easy or maybe not even possible to convey what one learns relative to diseases or disorders of different kinds. People may be always on the outside looking in, or something, unless they’re the ones on the inside looking out. I couldn’t even talk my way through doctors visits to get what I needed. Everything I told both of them will be in my records. I’m hoping they’re more clear or compelling than I am.
I remember working with one guy (he coped with some kind of schizophrenia), and he didn’t say much beyond, “Yeah,” “No,” and ask, “Huh?” It was all part of his symptoms. He didn’t blink very often. They called some of his symptoms impoverished speech and impoverished thought. He was in treatment the whole time I knew him (on medications). If a doctor relied on what he said to the doctor, then they wouldn’t have much to go on... in the way of diagnostics or anything else.
It pains me to think a man like him (in treatment for years) could have any helpful medication with-held from him because he didn’t know how to talk to doctors and couldn’t express what they needed to know to help him. He didn’t know how to talk to anybody. That was part of his condition. That’s how I've felt for almost 3 months now. I feel like Roberto. Fortunately, he had kind, compassionate, and intelligent doctors, at least when I worked for him, because I worked for them too. We all worked for a clinic, but we worked for Roberto.
I hope the same for all of you (that you find and keep compassionate, intelligent doctors who don’t knowingly or unknowingly cause you any harm) relative to whatever you cope with (narcolepsy and anything else). They treated Roberto all right, even though he gave one word answers to everything. He got what he needed from them. None of them wanted him to go without his medication. If he was running out, then we called him or somebody at a group home to have him show up. He did better than I did, in that respect (stay on his medication). I’m still working on it and don’t know why that’s so difficult to achieve for myself.
I hope your dreams are nice too. Mine are kind of better than a lot of life, but I can’t plan them. They just happen. It took me a long time (years) to realize it wasn’t really the people I was dreaming about in the dreams... but my own mind. After realizing that, I can’t forget it. It’s not fair (or accurate) to suppose the person in your dream is really the person you’re dreaming about (coz it’s your mind dreaming of the person--not the person). The dream-people live independently from your dreams.

They’re dreaming of people too, even if it’s not as memorable to them or they don’t remember dreams as often. One girl I grew up with told me she didn’t remember any dream she’d ever had. I thought that was impossible (coz my life is all I’ve known). Since then, I see her as a kind of alien, almost, like a space-alien, someone who doesn’t remember any dream she’s ever had? I thought she must have been lying, but I had no idea why she’d lie about that to me. She was never one to lie.
It sounds impossible to me because I was flying on my bicycle over my hometown by the time I was 10 or 11 yrs old (like 35 yrs ago). I flew off the bike while I was in the sky and saw a big tree down on the ground as I was falling... and I finally came all the way down and hit my head on a big branch of the tree and died--I guess--but all that happened was I woke up at the same time my head hit the branch in the dream.

It wasn’t really a nightmare, dying, coz I got to fly on my bicycle and then fall all the way out of the sky. There was an aerial view of my hometown up there (in the sky of my mind) even though I’d never been in an airplane at that time. How did my mind dream up an aerial view from over my hometown? I don’t know. I don’t know. Brain maps are wild. I knew the town on the ground, I guess, so my mind spread it out for me to see in the dream. It felt like I was flying over my home town before I’d ever flown in anything in my life.
Some years before I’d seen ET. It’s possible... I related to the alien myself. I had a bicycle. Maybe, it was all inevitable. Dreams. I thought everybody dreamed like that. They don’t. That was 35 yrs ago. I wouldn’t remember it if it weren’t so vivid. I can’t remember “dying” in any other dreams either, but just that once. I’ve lived a long time since then. I remember dreaming that and remember waking when my head hit the branch with my eyes squinting intensely like I was... bracing for impact.
I have to go to sleep to get my “7 hrs” or else this doctor won’t prescribe my medication when I go see her in a few more weeks. I have to do what I have to do because I need my medication. Doctors aren’t always reasonable. I don’t know what their hangups are. I just met them too the same as they just met me. I’m as skeptical of them as they are of me. It’s all interference. I’m trying to get through to them and do what they ask so they’ll help me.
I’ve served people who weren’t able to use CPAP 7 hrs a night because they had no where to sleep or plug in a CPAP machine. What would they do in my shoes? Not go back to the Sleep MD because they couldn’t use their CPAP 7 hrs a night. I have a place to stay and electricity. I need my medication so I’m doing what she asked because I can. What if I couldn’t? What would she do for me then? Nothing.
For anybody with narcolepsy (or idiopathic hypersomnia, a former diagnosis, treated with the same medication, it seems), what if you didn’t have sleep apnea (too)? Would your Sleep MD prescribe your narcolepsy (or alternately your idiopathic hypersomnia) medicine? I hope so.
Mine did not but it depends now on using my CPAP machine for 7 hrs a day, which I can do no problem. While these diagnoses are all sleep disorders, what does treating one have to do with the other(s)? I’m asking, what does this new Sleep MD have to prove to herself before she treats me, for any of the three disorders, and does that even have anything to do with me? I don’t know the answers. I’m just doing what she said I have to do. I’m trying to cooperate because she’s a doctor saying she’ll help me upon a certain condition--so I’m trying to meet it. If I couldn’t sleep the way I’ve always been able to sleep (too much) then I may not even be able to do what she asks. Would she help me then? I don’t guess so.
I hope you get what you need, people, whatever that is. Needs versus Wants. Doctors need to understand, and to understand sometimes they need to care. Then, they can understand better. I don’t know how to make them care. If they care, then they already understand... it’s the best place to start. There are limits on the good they can do. There may not be limits on the harm they can do whether it’s intentional or not. I hope all of you find yourselves in good hands.
Surprising symptoms of narcolepsy: the difficulty in finding... consistency among even Sleep MD specialist when it comes to a given patient. Diagnostics are a beast, I take it. Many sleep disorders have an overlap of symptoms. Give your new doctors as much information from old doctors (and sleep studies) as possible. I think my new doctors have that now. I’m hoping it means more than my visits to each of them.
I was naive to think I could take all my medication to them and show them what I take and tell them what my diagnoses were. I was wrong. They need records from old doctors. It’s more real to them that way than just talking to them or telling them about whatever. They need to read notes or see diagnoses from old doctors or it’s like they may not believe patients even when you show them your medicine bottles. I’m 46 yrs old, I think, and I thought I could speak for myself and tell them what I take and why, but all that got me was crossing off half-my-medications, a refusal to prescribe one, and then seeing what life would be like without it.
It got dangerous very fast for me, and I don’t like living half-asleep. I don’t like having “accidents” and having to go the ER and commit to a 2 yr payment plan for sitting there waiting for x-ray results. I post here occasionally because I don’t talk about much of this to anybody because most people have no idea what I’m talking about and it sounds like too many problems. I cope the best I can. I sit with as much as I can. You may not know either, and that’s okay. I kind of hope you don’t, but if you do, then maybe all this won’t sound so strange. Everybody’s got problems.
Surprising symptom of narcolepsy: naps. I thought they were normal because my grandfather napped all the time and fell asleep when people were talking to him, and my father sleeps all the time, but he’s retired so it’s not disruptive to his daily obligations... He too falls asleep during coversations. These were my grandfather and father... so I thought all people napped all the time, multiple times a day, because that’s all I ever saw them do. I don’t even know if narcolepsy is genetic, but I have a paternal grandfather and father about whom I’d say the same...
They smoked cigarettes (mild stimulant) to cope with EDS. Nobody recommends it now. It was 20th century culture, not medicine. I quit about 5 yrs ago, so I hope I get my medication because living on coffee and cigarettes is terrible. I go for walks/jogs, and I can smell a cigarette a block away if somebody’s smoking a cigarette somewhere.
If you’ve never smoked, then it probably smells disgusting. I smoked for 20 yrs, so they smell like barbeque to me, or something delicious. I’m not tempted. They just smell wonderful. I don’t crave them now. They just smell really good. One of the reasons I quit was because they “stank” and people started hating on them, but now they smell really, really good to me. I want to ask the rare smoker to give me a cigarette, but I always hated it when people bummed cigarettes from me, and I don’t want to be that guy now, so I don’t ask anybody for one.
They won’t help anything.
I think it’s one of the things people did when they had no medicine even if they didn’t know why they smoked all day and into the night. There are more reasons not to do it.
One is better off to take a nap sometimes. Zzz. I try not to but one would be better off.
All best wishes,

Loss of memory, and the mental illnesses that are so often a part of narcolepsy. (depression, anxiety, ADHD)

Overall muscle weakness and no physical strength. Was dealing with this years b4 I was diagnosed. Thought I was just out of shape! I wasn't diagnosed till I passed out on my Kit.fl & broke some bones in the fall. Was in the hosp 4 days for tests etc