PCP's and narcolepsy

I’ve had a peculiar experience of getting referred to another Sleep MD by my PCP. It’s peculiar because I went to the Sleep MD (to get my medicine the PCP refused to prescribe) and a new CPAP machine, because I also have mild-moderate apnea. I’ve dealt with nighttime sleep disruption all my life, dreams since I was a kid, and progressively the sleep paralysis and brain fog as I turned to a teen and beyond. I didn’t have a polysomnography until I was about 35 yrs old. They treated “psych” symptoms with anti-depressants until then because they didn’t know there were underlying medical causes (sleep disorders) laying the conditions to develop those symptoms. Stay awake for 2-3 days (don’t but) and you can develop every psychiatric symptom there is. It’s all related (sleep and the experience of our minds day to day). So, I didn’t get sleep apnea until I was about 30 yrs old. It was the tipping point although I still don’t well control when I go to sleep or wake (sleep timing, basically). I’ve had to work nights half my life to function in the world. I work swings also. I never work mornings. I can’t trust myself to get up. I don’t make appointments unless it’s the afternoon so I know I will show up. Anyway, The Sleep MD cares about CPAP and apnea only. She never asks me anything about narcolepsy symptoms. It’s strange. It’s like she’s not even interested in it. We spend 20 min talking about CPAP, whether it’s comfortable, whether it leaks, whether I get dry mouth. It’s all about CPAP. She gets everybody CPAP machines who needs them then spends each visit talking about CPAP (barriers in case she can help problem solve with those who have reasons they don’t want to use their CPAPs). The CPAP helps me not kick and twist sheets and throw pillows and stuff. It helps me hear alarms. I take it the oxygen is helpful. It doesn’t leave me restored or rejuvenated as people say, but it helps with the physical restlessness.
The dreams are still vivid, and I logged in because yesterday I asked my boss how his dad was. He looked confused, and it occurred to me that in a dream recently he told me about something happening to his dad or his dad getting into something, some kind of event or mishap. My boss didn’t know what I was talking about, and I told him it must have been a dream. I wanted to make a note of it because it points to how vivid the dreams are. It’s like that false memory thing, but they’re not false. One’s just failing to distinguish that a memory (like my boss telling me about his dad, which he does sometimes) is a memory of a dream and not a memory from our every day lives. It’s vivid if one confuses “real” life and a dream. It was kind of embarrassing.
He said, “We haven’t talked about my dad in weeks! Nothing happened to him!” People don’t really understand. I don’t expect them to understand anymore. That’s okay.
I wanted to say after looking at this post, it’s not just PCPs, though that may be true. Sometimes, it’s a Sleep MD who makes a million referrals for CPAP machines for people who need them. Maybe, even specialists get tunnel vision, or if 95% of their patients just need CPAP machines, then they might neglect all the other categories of sleep disorders for which they’re supposed to be informed and... trained to treat as well. It may be apnea has become so common even among Sleep MDs that some of them neglect the fascinating breadth and depth of... all the other sleep disorders. Maybe, these other disorders are not as common (or as easy to diagnose) as apnea.
My new Sleep MD hasn’t asked me anything pertinent. I saw she noted I suffered “persistent hypersomnia” even though I use CPAP. Everything is in the context of apnea with her. Narcolepsy is a hypersomnia. She likes to see all things in the context of what she knows, which is apnea, sleep-disordered breathing, and CPAP therapy. It’s like she’s prescribing my medicine so I don’t care if she knows why, exactly, completely, or that I need it regardless of CPAP. I didn’t get apnea until my 30s, and it’s like she thinks I experience this hypersomnia (worse without CPAP no doubt, and medicine certainly) in spite of using CPAP, but she can’t see beyond the apnea, like she thinks it’s the cause of all my sleep problems. The problem is I didn’t get apnea until I was in my 30s. I’ve had sleep disruptions all my life. In itself, that fact might reorient her thinking, but she’s not really interested. We can’t make people interested if they’re not, can we? We might think they would be (given they’re doctors or even Sleep MDs), but that’s just what we expect. Maybe, they’re thinking about their kid or sick relative or... billing or something.
My new Sleep MD got records from my first good Sleep MD from 8 yrs ago. He told her, Idiopathic Hyersomnia, Circadian Rhythm Sleep D/O, Delayed Sleep Phase type, Shift Work Sleep D/O, and mild to moderate apnea. All these are reflective of my whole life, basically, except for apnea, which I didn’t get until I was about 30 yrs old. So, I don’t know why it is that a Sleep MD would frame everything in the context of a problem I got as a grown man when my whole life history is reflective of all these sleep D/Os. It’s almost like it’s all she cares about (apnea and CPAP).
I understand she’s interested in that and good at it, even. It’s that there’s a whole lot more (disorders) to being a Sleep MD than apnea (ie Narcolepsy is a fine example, or IH, or the circadian rhythm sleep D/Os, or many others). She’s a Sleep MD. To me, she’s limiting herself to this one disorder, apnea, maybe because apnea patients comprise so much of her caseload and/or day. Most of her referrals are to treat it, not other sleep disorders like this (narcolepsy).
So, a doctor 3-4 yrs ago changed my diagnosis to Narcolepsy. He wasn’t even a Sleep MD. I didn’t know about it until a year later. I’ve been on the same medication while these diagnoses changed over the last 8 yrs. I don’t care what they say, really, as long as I get what I need, but I’d like an answer, kind of. They know what helps me. They can’t decide if it’s Idiopathic Hypersomnia or Narcolepsy, and after trying to educate myself on narcolepsy, I thought that was the one. The only aspect I don’t relate to is the quality of naps, and it’s not really one of the criteria. It’s more of a trivial trend or something.
I’ve read people with narcolepsy have refreshing naps. I don’t. I’m more like IH patients because mine (and no sleeps) are “refreshing”. I don’t know what that’s like (to wake refreshed). Only the dreams help me wake in a way that’s more alert and feeling better than waking from other phases of sleep. I always felt a charge waking from dreams because they were emotive and vivid and quite fantastic. Many assume “dreams” are nightmares, but I’ve never really had those. My dreams are great, most usually. I wish I could live in that world sometimes or exercise more agency in it, but I’m at the mercy of them and what happens happens (in dreams). I try to remember them because they’re strange even though they’re wonderful, mostly.
These are some of the ideas my Sleep MD should be talking to me about (sleep intertia, whether I have vivid dreams while waking or while “trying not to fall asleep” and unable eventually to keep from it, the quality of naps, sleep paralysis, and whether or not there’s cataplexy and how it manifests. At least, I would think. She did ask if I took a lot of naps. I said, “Not on purpose.” That was that. She doesn’t really probe much, if that makes sense. I talk too much in visits and derail them, maybe.
All I get is “You use CPAP all the time. It’s says you may have a leak. Is it uncomfortable. Do you get dry mouth. Does it come off? Do you suffer dry nose?” I mean, that was 95% of the visit the last time I saw her. She prescribe my medicine so I don’t care, I guess, but on some intellectual level I don’t understand why a Sleep MD diagnosed me with 4 disorders, a PCP changed one of them to Narcolepsy (or consolidated a few of them, even), and my new Sleep MD (my PCP sent me to to prescribe my medicine) doesn’t have any interest in it or me beyond CPAP and apnea.
I think she prescribes my medicine based on the fact I use CPAP but still deal with EDS. She doesn’t realize I’ve had a lifetime of disrupted night-time sleep and doesn’t particularly care. I don’t really know how to--is it unreasonable to expect different “specialists” to come to the same conclusions eventually? Shouldn’t they? With the same guy or person? I’m curious on some level my Sleep MD isn’t. She’s content with a disorder I developed as a 30 yr old man. I’m more interested in what I’ve been dealing with all my life because it’s every day, if that makes sense. It’s the life I’ve known.
I use CPAP because it’s helpful in a few ways. It doesn’t invalidate a lifetime of sleep disruptions, crazy dreams other people don’t have or remember, and a near inability to wake and get going in the AM (I don’t do it even in my current occupation). I’ve tried and failed to do that many times. We must do what works for us. I don’t know how much I can change, at this point. I have tried to make some peace with it. We sleep when we’re sleepy and... feel better. It would be a shame to be sleepy all day long and then go to bed at night when we start actually feeling better, wouldn’t it? We’d be sleeping when we feel better and awake all day in and out of a half-slumber.
We do what we have to do. I don’t know. I just wanted to point out that I don’t know if even all Sleep MDs know a whole lot sometimes beyond whatever specific thing they’re into--in my case or my Sleep MD’s case it’s sleep apnea and CPAP therapy. That’s her real specialty even though as a Sleep MD we expect more. She makes most of her money with apnea patients and CPAP referrals. It’s most of what she does, so maybe she has forgotten some of the many other sleep disorders, or never studied them as much as sleep-disordered breathing. We retain what we do all the time more than what we learned one time or years ago. It’s just human nature.
I’d still like an answer though about my own diagnosis. I think three doctors have helped me with this medication. I think they’ve all done it on a different basis. I don’t care why they help me. I need the help. I do wish there was some consensus about it (one would think diagnostics are important and the only way to determine the right course of action). As it is, the same medication may be prescribed for all these disorders (whether Idiopathic Hypersomnia, Narcolepsy, or as an adjunct for people with apnea who use CPAP all the time and still deal with the EDS, or shift work sleep D/O when people can’t get up at 6am and start any day--does one wonder why that is... working nights sounds like night-time sleep disruption already). There is no night-time sleep working nights.
I don’t know if I belong in this group anymore because I don’t know if my Sleep MD verified or ruled out the Narcolepsy diagnosis. It all depends on what the new Sleep MD says, what he or she thinks, and it’s not permanent, I guess if they can’t agree among themselves in the context of any specific patient. You’re narcoleptic, you’re not, you live with IH, you don’t, it’s all from apnea. I mean, these are doctors changing the script on me as time goes on. I’m just the patient, man. How can I know if even these doctors can’t agree? Where does that leave me?
It leaves me with my current doctors, their views or opinions, and that’s all. It’s just what they think. We know disorders, particularly those we’ve lived with for years, are not as changing as the views of a series of doctors over the years, specialists included.
I have no consistency from one doctor to the next and different diagnoses from a few Sleep MDs now. I don’t have any idea. I’m weary of arrogance. Doctors are smart people, in general. I’m concerned there’s a kind of arrogance sometimes that actually blinds even physicians when they might just explore, inquire, and consider more (instead of thinking they know everything immediately). It’s not a problem just in some doctors, but in all people, maybe, but it’s particularly... frustrating when it comes from a doctor or doctors we pay to know what they’re doing to help us. It’s detrimental to properly diagnosing patients (arrogance).
My new Sleep MD retained at least “persistent hypersomnia” but she sees all through the lens of apnea, so I don’t even think she kept the Idiopathic Hypersomnia diagnoses or the circadian rhythm one from the first Sleep MD 8 yrs ago. It’s like, if they specialize in the same field, they share the same speciality, then how do they come to such different conclusions? Abstractly, I don’t understand that.
The first few doctors mentioned here considered my life history, which makes sense. The new Sleep MD just considers from the time I got apnea in my 30s. It seems narrow. I don’t know why doctors wouldn’t want to know people’s whole life histories because in each of our cases that’s what leads us all to the present, isn’t it? It’s made us what we are for good or ill (where in health and where disordered). It’s the overarching context of how we are today and tomorrow (our life histories).
So, to the one who posted, you can’t make people interested in what they’re not interested in. You’d think they would be interested (being doctors and knowing you), but I can’t even get my Sleep MD to be interested in it or ask me anything about it or try to figure out the... Narcolepsy versus Idiopathic Hypersomnia bit, or anything like that. She’s just into CPAP and apnea, and she is a Sleep MD. So, to me, that’s worse than a PCP not being interested in narcolepsy, but maybe that’s my problem--I will tell you what’s worse lol
Good luck with it all! I’ve decided telling people about the dreams (when I’m not mistaking them for real life) is like telling people about genealogy. They listen for about 8 seconds, and then they have no idea what you’re talking about. It’s not that they’re not interested. It’s that they can’t really pay attention because they can’t imagine what you’re talking about. You’re talking, but they can only go so far with you (about symptoms or the disorder more properly). It’d be like me trying to talk to my Sleep MD about episodic migraine, high blood pressure, and high cholesterol. I can’t even get her to tease a more definitive diagnosis between Narcolepsy and IH. People only go so far. Their time is limited, and they have 35 more CPAP patients waiting to get machines, complaining of discomfort, resistant to it, etc. I don’t know.
It’s hit and miss with doctors. Maybe, they can only do so much. Surely. They’re too busy. I try to make excuses for them (to account for deficiencies) but I’m tired of doing it. Some are good, compassionate, caring, smart, with good judgment. Some are not any of these. If you find good doctors (whether PCPs or specialists) then try to stick with them. If you are not satisfied for whatever reasons, weigh your options. It’s not the end of the world to get somebody else. You pay for services on some level. Find a doctor who’s worth your time and money. If you don’t think one is, then try somebody else. That’s what I’m about to do with my PCP. She’s driving me crazy. Doctors aren’t supposed to drive you crazy. I won’t get into it. Don’t let me get into it.
I hope your doctor handles what he or she needs to handle for you (if it has not much to do with narcolepsy). They are supposed to know about other problems and treat other problems. Maybe, the person is good at that. There’s this tradition of PCPs and specialists “collaborating” on behalf of patients. I don’t think they have time even to talk to each other anymore. I think collaboration is a great idea, but I don’t think they do it. If they did, then they might have a more overarching appreciation for how all kinds of disorders and/or problems are related (high blood pressure, migraine, sleep disorders, etc, examples that are easy for me to note but only examples as many other disorders are related, untreated diabetes and all its tentacles of disease, for example).
Sorry to write so much. I hope your PCP does a good job even if the person doesn’t know much about narcolepsy. It would be helpful to us if they were considering frequent co-occurring disorders. PCPs should be interested in all disorders even for the sake of getting ahead of risk factors for other common problems (by virtue of any diagnosis) in relation to some other problem that comes up at a higher rate given any certain diagnosis.
Anyway, sometimes, it’s not just PCPs but even Sleep MDs who... aren’t particularly interested in a subject of their own field and specialty. There are maybe five categories of sleep disorders. A Sleep MD might know about all of them. A PCP should know about some of them. Sleep is such a fundamental stabilizer... in theory, at best, that we really have to work to ensure that foundation (in terms of quality as much as quantity) is strong (for the rest of our daily lives and health to be strong).
Really, it’s true no matter what doctors care about, know about, do, or don’t do. We have to get quality rest for ourselves however it is. It helps people in more ways than they know, I think. I was really disappointed that psychiatrists don’t always ensure (if they can) that every one of their patients with psych symptoms aren’t suffering from some underlying sleep disorder (causing psych symptoms), but maybe that would require a polysomnography, and maybe insurance companies don’t want to pay for them, and maybe it’s not possible. It’s supposed to happen (rule out any underlying condition that may be causing any set of symptoms). It didn’t happen for me for 15 yrs (a sleep study).
There wasn’t a doctor I ever saw I didn’t mention sleep disruption symptoms. No doctor immediately had the idea to send me for one. It was a job that didn’t want to fire me even though I was late all the time and never woke up to go to their 7am Sat morning meetings. I rushed in when I rushed in, and I did the best I could from the time I got there. One of my old jobs sent me for that test more than any doctor I ever saw. That bothers me. If they’d wanted to fire me then they could have. They didn’t want to. It helped me in terms of treatment even if the doctors don’t agree on my diagnoses.
They’re just people, and maybe it’s hard for them to imagine much even though they’re doctors in positions of great consequences to their patients. I hope they take it seriously and realize that what they do as well as what they do not do can help as well as harm their patients. They are never supposed to harm us. We accept that they try to help us. We hope they do. We work with them so that they will. If they don’t, or if they harm us, then we should probably find a doctor who does not harm us but rather helps us.
It may not be true, but I see PCPs as generalists, you know? I see specialists as specialists. It’s really person-specific (who is good at what they do and who is not). We need compassionate, smart doctors who are interested in our lives to the extent we have problems or struggles (who doesn’t?) and need treatment for any problem or struggle in the context of medicine or health.
My PCP is kind of the same. That’s why she sent me to the Sleep MD. My PCP just didn’t want to prescribe my medicine. I get it, kind of. She gets a pass because she said, “That’s not my specialty!” She’s not interested either. She still has “Controlled Narcolepsy” in her records. I don’t even know what that is, exactly. I think it means I stay as active as I can so I don’t sit down and get sleepy and fall asleep. It helps me to be on task and not sit at a desk or have TVs around or eat much during a work day (that makes me really sleepy). Anyway, my PCP doesn’t even have in her records what the new Sleep MD has in hers (and the PCP sent me to her).
I think they’re all in mutual oblivion and don’t communicate. Take care of yourself and try to get you pay for, I don’t know. If you go to a cafe, and it’s terrible, then don’t go there anymore. If you buy something and it’s junk, then avoid that brand? If you’re getting what you need from your PCP, then decide what you can live with or accept in spite of the PCP not being too interested in your sleep disorder.
I hope I didn’t tell you wrong. None of this is advice. I don’t give that. I just like to share ideas. You make me think with your post because I’ve been going crazy because of my doctors, for about 7 months. They’re “in network”. Bummer. The other Sleep MD I could have chosen didn’t even do in person appointments lol
Slim pickings,
Best wishes to you!

Absolutely, ! If doctors are ignorant about narcolepsy, they won't recognize it and the gaslighting/misdiagnoses will continue. I'm glad you at least tried to educate your doctor. What a shame that she didn't really listen. Warm wishes. - Lori (Team Member)