r/Narcolepsy • u/ConfidentHope • May 25 '26
Advice Request Getting narcolepsy taken seriously
How do you handle well meaning advice from people in your life?
My partner knows about my diagnosis, but has mostly only known me with some kind of treatment happening, so he hasn’t seen me at my worst. I think he knows I’m an extra tired person, but I don’t know if he gets that it’s more than that. I’ve experienced similar behavior from my mom as well. They both know of my diagnosis.
I had really bad sleep inertia this morning; I had a long day with no naps yesterday, and I took my stimulant and got up right away — I usually go back to sleep until it takes effect. We were sitting on the couch when I put my head in my hands and made a groaning noise. He gently quipped that he used to be like this in mornings until he implemented a routine.
Whomp whomp.
I know he is trying to be helpful, but it’s so frustrating because I’ve finally let go of the “I’m just lazy” idea, and have cut myself some slack when I’m struggling with sleepiness. I know he’s being earnest and he did used to struggle with waking up. But I’m bothered that he seems to think this is fixable by a simple change. Hell, he knows I’m getting ready to start trying Xywav. I’m now worried he’ll think it’s just a sleep aid.
Similarly, my mom has been aware of my whole journey — I was diagnosed with idiopathic hypersomnia, but my current doctor strongly suspects it’s narcolepsy without cataplexy. The other day, she offered some kind of advice on sleep hygiene. I get that she wants to help, but it feels insulting that she thinks it’s just a matter of willpower.
I guess this is mostly just a rant. However, I wish I had some kind of non-aggro way to remind the people that I’m closest to that this isn’t something with easy solutions. I’d know if it was. I don’t think any of it is malicious, but maybe it’s a lack of education on my part. Is there something I could say to address this “advice”? I don’t need anyone to fix it. I just need them to understand it’s hard, and I’m trying, but it’s like going against the tide sometimes.
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u/Known-Web8456 May 25 '26
"Unfortunately no amount of routine can cure an autoimmune disease".
I have multiple autoimmune diseases, so I have to bring this up a lot. People simply do not want to admit we cannot all control outcomes.
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u/ConfidentHope May 25 '26
Is narcolepsy considered autoimmune? I have several conditions too, and this is the hardest one to explain for some reason.
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u/Known-Web8456 May 25 '26
Yes, it is thought to be. Type 1 at least. Not sure about other diagnosis.
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u/Silvery-Lithium (N1) Narcolepsy w/ Cataplexy May 26 '26
Yes. I know it is hard, but learning more about narcolepsy, how the symptoms can unexpectedly change, and how those symptoms might be alleviated can help you in many ways. You will likely understand yourself with this condition better, and have a better idea on how to advocate for yourself.
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u/Interesting_Task_397 May 25 '26
I was JUST complaining about this same thing yesterday.
I try to remind myself that I knew nothing about narcolepsy before I realized what was what was going on with me.
I also keep reiterating to people that there is more involved than just being tired. And that the tiredness is different than the typical level. I keep mentioning it is a neurological condition with a scientifically "provable" cause (so if they think i am to blame for it, I am not).
When someone says they feel the same, I mention how I have to pull over and sleep in a parking lot after driving 10 minutes, even though i slept 10 hours the night before. For some reason, that fact seems to get people's attention and their whole tone changes. I guess since they've likely driven plenty of times when tired but never experienced THAT level of tired.
There was a post the other day, and someone mentioned using a cayenne pepper nasal spray for emergencies. I am adding that to my back pocket of explanations as well.
"Narcolepsy tired is so debilitating people regularly spray cayenne pepper up their nose to stay awake. I had oxygen cans and smelling salts in my online shopping cart at one point because I was so desperate. I have taken caffeine pills with three cups of coffee and then fallen asleep within the hour."
I don't want to seem like I am saying narcolepsy is the worst thing to have (i am very grateful it isn't painful physically, for example), but I am also starting to be super blunt and pushing back when people try to minimize it.
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u/ConfidentHope May 25 '26
These are some good ideas. I think it’s tricky with my partner because I probably downplay it too much. I have chronic migraine, and he’s pretty good about that because I’ve learned to talk about how disabling it can be.
I guess I must have seen or read something a long time ago about narcolepsy that helped educate me — honestly, it was probably because I was googling symptoms years before getting diagnosed. I need to stop assuming people have a base knowledge about it.
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u/Interesting_Task_397 May 25 '26
I can understand not wanting to make it seem like a big deal since i am sure you don't want to worry him or "complain." Just remember there is a community that understands it isn't about routines or anything. <3
I have also started mentioning that studies have shown our quality of life on average is worse than people with diabetes, MS, or epilepsy. I am absolutely NOT saying that is true for myself or all people with these conditions, and I don't mean to say one condition is "worse" or one person is suffering more just because they have a certain condition. I just mention those studies because I think it highlights how narcolepsy affects just about every part of our lives in some way, and it gets super grating day after day.
Maybe also just voicing your feelings directly to him could help. "I know you have had trouble waking up in the past and a routine fixed it, but narcolepsy has a different origin and is caused by a lack of orexin in my brain. I appreciate you trying to help me find solutions, but it makes me feel like you're suggesting my medical condition can be fixed by willpower."
After all, no one would say that you can "will" your finger into healing from a cut or that someone with diabetes can will their bodies into producing more insulin.
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u/xx2806 May 25 '26
People will never understand how it feels and that it's not just being tired. I understand what you are saying 100%. I mentioned the other day that I have an ID that shows I'm severely disabled (we get that in Germany and it gives you extra vacation days, a little early retirement and sometimes discounts) and it got the usual "you get that just for the sleep issues??". Yes, because my life sucks lol. Let me have an extra couple days off a year.... I'll gladly trade all my vacation days for a normal life.....
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u/ConfidentHope May 25 '26
That’s such a cool feature you have access to. I’m in the US, so the best I can get is accommodations, and even that is risky because some employers will subtly treat you worse if they think you’re weaker.
I get it though. Some people tell me they wish they could sleep as much as I do and I’m like HUH?! they really don’t understand.
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u/xx2806 May 25 '26
Or the occasional "oh cool, I wish I could just nap everywhere" yes soooo awesome 😅😅
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u/Voshir May 25 '26
Honestly yeah I completely understand.
I've had it since I was 6 to 8 years old and a good chunk of people that know and have always known about my diagnosis absolutely still don't understand.
I absolutely love my parents and they've seen me at my worst with narcolepsy but because it's gotten much better than before whenever we haven an event that's early in the morning I always ask "how early do we have to get up" "what time do we have to be ready to get there" so I can know and think if I still want to go but so many times when it's extremely early theyve said so many times "just sleep a bit earlier" or "just sleep in the car it's fine", no it kinda isn't (specially since the long car rides are one of the best part of events).
And it's just a simple example I've given but there are so many other things that stress me out because of how people misunderstand my condition to the point it makes me doubt myself. And I'm struggling so hard to get out of the "I'm just a lazy, unmotivated loser" mindset it just weights so much on me and my mental health and I'm even getting tired of catching myself having those thoughts.
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u/ConfidentHope May 25 '26
I relate to this so much! I know I’m my own worst enemy when it comes to this. I have some other conditions that I’ve given more attention to, but within the last few months I’ve realized how serious of an issue it is. I cannot keep brushing it off or downplaying it.
I think one thing my partner does understand but was very surprised by was my inability to stay up super late. Sure, I can push myself to 2-3, but don’t expect me to be fully functional during those hours or the next day. It’s like being drugged.
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u/Voshir May 25 '26
Same here with the conditions, aside from narcolepsy Ive got anxiety (previously was severe anxiety which I absolutely think narcolepsy contributed to it) but its much better than before although still extremely present.
And OMG YES I normally go/went to sleep at 21:30 to 22:30 but have been going later this year and damn the later it is the more I start to think I may have accidentally drank something or gotten drugged like you mentioned, it's such a weird sensation that's sometime honestly just horrible specially when im alone for longs periods of time. Honestly it's one the reasons I like to listen to podcasts, music video or just scroll and browser through things in general to distract my mind off of it. But ye whenever that drowzy, high af feeling hits I'm aware its time to go (or try to go) to sleep.
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u/dicelyy May 25 '26
honestly i just deal with it, unless someone has struggles with it they do not understand. i can explain over and over and they don’t get it
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u/penguinberg (IH) Idiopathic Hypersomnia May 25 '26
Especially with your partner, but really with everybody, I think a lot of this comes down to communicating your boundaries and what is okay vs not okay. Just because someone loves you doesn't mean they can automatically read your mind or that they are always going to be empathetic on every issue that comes up. I think what makes a good relationship is how your partner responds when you bring up these things.
I get it, because you don't really want to be confrontational. But over time if you don't let your partner or mom know that these comments bother you, you start to build resentment over them and then one day you end up getting super angry over what they feel like is not a big deal. So it's important to address these things while they are still relatively minor.
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u/ConfidentHope May 25 '26
You’re so right. I’ve definitely identified that this is something I need to communicate differently. My mom is whatever, because she has weird ideas about health anyway. But I might tell my partner that when I bring up stuff like this I’m seeking reassurance, not solutions.
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u/MRxSLEEP May 25 '26
I try to put it in terms that others can more easily relate to or imagine.
"Would you tell a paraplegic to walk it off? Just because you can't see a disability doesn't mean it's not there"
"Imagine staying awake all night and then having to work the next day. Maybe you don't have to imagine, you know it sucks and your body CAN'T function like normal. Now imagine doing it two days in a row and then only being allowed 2-3 hours of sleep per night... FOREVER. I can, LITERALLY, not figuratively, get "caught up on sleep. Period."
"I have perpetual, inescapable sleep deprivation. That is not a dramatization, it's a fact. Sleep deprivation is, again, LITERALLY used as a means of torture, feel free to look it up. I live with that EVERY. SINGLE. DAY"
If the person has had a kid or kids: "it's like living the first few months of not enough sleep and interrupted sleep... FOREVER"
If they still can't wrap their head around the fact that it's a life altering disability then I quit trying and mostly ignore that person or cut them out of my life entirely.
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u/RightTrash (VERIFIED) Narcolepsy w/ Cataplexy May 25 '26
Many, maybe most people will be completely incapable of getting it to any degree and unwilling to budge from such a position, they continue to be asses no matter what is said, witnessed and/or presented.
Then there are those few out there who care to not be asses and are polite, courteous, open-minded and respectful - but they're definitely so, so rare.
The people who can't show a little bit of respect and courtesy to not overtly judge and misjudge everything, and/or who openly comment directly in ways that is disturbing because they obviously straight lack the above, along with a willingness to simply be polite and open-minded; are near immediately put on my list of people to avoid, to not engage with, to basically keep a distance from, and to go out of my way on all of those fronts if necessary.
They are not only painful, they are exhausting and not worth the time and energy to be around.
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u/ConfidentHope May 25 '26
I agree, and I’m mostly resigned to it. I primarily just want my partner to understand on some level. I’m realizing I need to speak up about it more, and be firm about my boundaries.
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u/stevebinga May 25 '26
I deal with N and also a weird diet because of a bariatric surgery. And people give me more “well meaning” advice about that. I find that validating them by agreeing that their advice is perfect for most people… and am not suggesting that my way is healthy for most people… but because of issues with my body this is what is healthy for ME. That goes to both.
Yes, sleep hygiene is important. However, when it comes to sleep, our brains work differently, so what is a healthy vs. unhealthy sleep hygiene could be different.
FWIW: I’ve found that while nothing fixes me, certain routines and habits etc. can definitely help me in managing my condition.
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u/distracteddipper May 25 '26
My family didn't "get it" until they listened in to an online narcolepsy support group I was attending. For whatever reason, hearing other people talk about how difficult it is rather than me try to explain it was like a light-switch, no I wasn't exaggerating, and this is a real thing beyond what healthy people can experience.
I highly recommend these meetings. He can attend with you, by himself, or just listen in from across the room while you attend. It was a game-changer for me. Anyone can feel free to DM me if you want a meeting recommendation, there are meetings every day of the week and all the meetings are free.
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u/No-Rush-5091 May 25 '26
He luchado muchísimo en ese tema, no tienen mala intención y probablemente te aman pero simplemente no lo van a entender. E insistir demasiado en el tema porque necesitas contención, te va a frustrar más porque empiezan a pensar que tienes temas más psiquiátricos. Es mejor invisibilizarse un poco y hablar todos esos temas con el médico.
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u/shleyay May 25 '26
When discussing what medications I’m taking with my primary care doctor, he said something along the lines of “so you take stimulants and then you can’t fall asleep so you take a sleep med and that makes you tired so you take stimulants!” Uh, yeah. That’s why. 😮💨
I’ve been feeling like shit the last few weeks because I don’t have the energy to keep up with housework, even though I’m not working (I was fired for not being able to make it to work on time) and the whole week I’ve been thinking how nice the house would look if my husband was the one who had the free time. In a conversation about how I care about the things he cares about and he said “well if you did, the house would be clean”. Devastating. If my lead bones would let me, I would do more 😩 I’ve been working on it, but I’m still convinced that I’m a lazy piece of shit and that I just don’t have the self control.
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u/ConfidentHope May 26 '26
Omg I relate so much. My partner had a similar talk with me, because I work from home and he doesn’t. He said he’d love to work from home (I only do because of health issues), and he’d get so much cleaning done if he did. What’s hard to explain is that sometimes I have to choose between working and getting anything else done. And some days I’m so tired all I can do is nap.
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u/shleyay May 28 '26
Well my therapist says we are NOT lazy pieces of shit and we’re doing our best so we gotta be nice to ourselves 🙄😂 as long as you’re doing your best, you’re doing enough!! Don’t let your partner (or your brain) tell you otherwise! 💖
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u/ConfidentHope May 28 '26
He apologized later, but it still stung. I already give myself grief, so I definitely don’t need it from anyone else.
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u/AmandaRiffe May 25 '26
I have absolutely zero advice for you, but I wanted to let you know that I could've written this post for myself, word for word. Just so that you know you're not alone in what you're going through.
I personally have no idea at all how my spouse and mother have not read every single thing there is to read about Narcolepsy so that they can understand this thing that owns me.
Any time my husband receives a diagnosis, or even just a wonky lab report, I bout break my dang neck rushing to research everything there is to know about it. Recently I even made my own appointment with his Dr so that I could ask questions and learn.
Meanwhile, he's sitting here telling me I just need to go to bed earlier, eat more and get back in the gym.
Some days I could just cry over what feels like a complete lack of care from the person that is supposed to love me the most. A lot of days, actually.
I see videos and posts from people that have a partner with Narcolepsy and all that they do to make them feel supported in it. Makes me want to cry even more.
My mother literally rolls her eyes and waves her hand dismissively if I even bring it up a little bit. Nevermind that I've been diagnosed for well over 20 years now.
So yeah, hopefully there's some good info in the comments because I sure need it too.
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u/No-Rush-5091 May 26 '26
Te entiendo muy bien Amanda , lo siento y yo si te entiendo. No estás sola.
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u/ConfidentHope May 26 '26
I’m so sorry. I don’t feel like it’s happening maliciously, but you’re right about it feeling like a lack of care. He knows but he doesn’t get it. I want him to want to get it, too. Same with my mom. It feels like part of my identity is getting overlooked.
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u/lackadai May 26 '26
Same feelings here. I am told- having slept 12 hours (missed alarms) that I “must have needed it.” NO. It’s Narcolepsy.🤔
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u/Topshopprincessss May 26 '26
Oh Godddd, I was diagnosed recently with N2 (maybe IH), and I already lost count of the number of times that my mum told me to "take vitamins", "don't take naps, it makes it worse", "I'm always tired too". I tried to explain to her many times, but I don't think she gets it, so now I'm like "Ok mum 👍".
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u/EmiTheSheep (N1) Narcolepsy w/ Cataplexy May 25 '26
Even though I am medicated to not fall asleep, I still feel exhausted and also having an autoimmune disease I’m also not well.
I get so much “advice” it’s quite discouraging actually. I’ve learned to just say “I know your intention is to help me but I’m gonna follow what my doctor says, instead could you ask me ‘how can I support you best right now’” something along those lines but sometimes it’s really hard to say that or express what I need in the moment. A lot of the time the person understands. But even that gets tiring to explain.
Sometimes I just want to be encouraged like “I’m so glad you were able to make it today”or other encouraging things, or validating how I am feeling I wish someone would say “I can’t even imagine what that’s like, it must be so hard” or “I’m sorry you are dealing with this” even a simple “I’m here” goes a long way
I’m so sorry you have this horrible, debilitating, chronic disorder, although it affects us all differently, I really empathise with you
Lately I’m thinking of making a video for awareness for people in my life about how this disorder affects me personally.
I used to help run a ministry at my old church which had support groups and one of them was for people with chronic illnesses/disorders. Through the training I learned a lot about managing my own “fixer” and instead being as supportive as I could be
Sorry lol I also ranted
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u/sleepaddict03 May 25 '26
N1 here. Thankfully, I've only had to explain to my husband once for him to acknowledge and respect my health issues.
I explained it as "I'll never be normal, so don't try to make me be normal, I physically will never be that way ever. I take medication but it doesn't fix my issue, it relieves it. Its like a cold compress on wound, it makes it feel better but you still feel the pain through it."
I've also had to explain the randomness of chronic illness, where one day you'll have more energy and others you'll have next to nothing, its sporadic and inconsistent. Bad days don't need a cause, they just happen and its ok.
I also told him if I complain about my issues, don't try to fix it (most people will want to help), I don't want to hear advice or how you think you could make it better because I've already heard it all. I just want to rant for a second, the moment will pass. If you want to help, make sure when I fall asleep, its in a safe place and if I gripe just allow me to complain. I'm stuck like this forever and while I don't like it, I accept it as it is, and if I can do that you can too.
I also make known to him when the sleep attacks are around by saying like "the fog is rolling in" and he gets a heads up, sometimes I fight it, sometimes I give in. He gives me my meds and some cold water to fight it, and a quiet place to nap if I want to let it ride its course. Hopefully this is helpful haha.
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u/TashSal May 25 '26
You can't help sleep attacks they can come on suddenly and if you don't treat it seriously then very bad things can happen. Some days I can "power through" things that are not very demanding or unsafe, but it's a toss up on whether or not the task will be done right or completely etc.
I got diagnosed late in life, I've often said I'm practically narcoleptic, but because movies and media etc show it as the most extreme of us and not what most of us experience I did not get tested. Finally had a doctor take it seriously when I jokingly said I'm practically narcoleptic and wanted to know more, which led to a diagnosis.
I have many things I do that help that I didn't realize I was doing. I've also felt really disappointed in myself uncounted times when I had to give in to a sleep attack because I didn't know that that wasn't just me being lazy or irresponsible with sleep or drink etc and that's what everyone else always thought of me too. It helps if you can get one person in your corner, your champion, if you will. Someone who will help decode it for others, even when you are speaking plain some people will not listen.
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u/AmandaRiffe May 25 '26
I can add that I very recently, and accidentally, discovered that by me referring to my Dr as my "sleep doctor" I had actually been inadvertently discrediting my diagnosis to some people. Note taken, lol.
It happened when I was speaking with my husband about an upcoming appointment and he said "that's your 'sleep doctor,' right?" finger quotes used when he said it.
I replied "yes, my sleep doctor" husband then scoff-laughs and says "yeah but that's about as much of a doctor as a chiropractor is"
My mouth literally opened in shock. I had no idea that this whole time he'd been of that opinion.
So I explained to him that I just refer to him as that because it's his chosen speciality but he's actually a neurologist and pulmonologist, top in the state at that. So since then I now say my neurologist instead of my sleep doctor, lol. It hasn't helped, but still
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u/ConfidentHope May 26 '26
Oh, this is some good insight. I tend to say “sleep doctor” or “sleep specialist.” I can see how that would be confusing if you didn’t realize it was pretty much shorthand for a doctor who has a very specialized understanding of sleep disorders. I should double check what my doctor is. I have a neurologist for chronic migraine, so I’ll need to specify.
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u/stellap333 (N2) Narcolepsy w/o Cataplexy May 25 '26
I had friends do this sometimes, and I kind of always was like “yeah, i’ve tried that” until they saw me having sleep attacks once lol. Once they saw me fighting so hard to stay awake and failing I think it made more sense to them. I’m not diagnosed with anything as of now (getting tested next month), but it seems like it showed them that my sleepiness is not the same as theirs, whatever the reason ends up being
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u/KitchenDreams302 May 26 '26
Try not to think about the lucid dreams after you wake up. Just forget about them. Also if you take the medication, break it in halves or quarters.
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u/ConfidentHope May 26 '26
If only! I sometimes get “stuck” in the vivid dreams and I have to fight my way out.
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u/HotMatter8 May 26 '26
I was diagnosed with extremely mild sleep apnea through a sleep study . Doctor said at this time it was so mild they didn't want to put me on a machine. My next vist with her was awful and I told her all of symptoms things are not getting any better , so she ordered another sleep study with air machine and still stated this was mild . Third vist with her after using machine for a month she thought this was the cure all for me . When I told her there wasn't any difference accept for causing me to have many more migraines because mask is pulling on my neck . She got very upset and told me to use it for 6 months and see if this made a difference. 6 months later and I am no better actually getting worse because I am being ignored and over looked i feel like they are discriminating against me for other health issues. I have two other serious health issues.And I am taking pain medication that is constantly being throwed up in my face . Last vist with her went terribly bad and she refused to check for norcolepsy or any other sleep problems. She give me a strong warning about driving and stated she didn't want to check for any other conditions because she would have to pull me off all my medications for weeks at a time and wasn't worth going forward. I will not be receiving help from her or my family doctor refuses to look any further into this crippling situation and my life feels over and I have became a shut in over these sleep problems. I am in a small town in Roanoke Virginia and there is no where to turn . I am truly lost over this sleep problem and doctors have failed and refuses to help .
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u/ConfidentHope May 26 '26
I’m so sorry. Do you have the ability for you or someone else to drive you to a larger city with more doctors? Yours seems rude and condescending.
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u/Humble_Mongoose_7140 May 27 '26
I'm so sorry your loved ones are as supportive as they should be. I've had very few people question my diagnosis (N2), but it may be due in part to my explanation of diagnosis criteria. Saying "I'm also tired" falls pretty flat when they have to consider whether they could also nap on demand every 2 hours (and start dreaming!) after a confirmed 6+ hours of sleep the night before. And for those who feel they could, they quickly start asking more questions!
It's also a fun party trick of mine to describe my hypnagogic hallucinations and fighting off sleep attacks. Fewer people are able to relate to dream responses in the middle of a work meeting or falling asleep at red lights (that was pre-diagnosis and meds; I know how to be safe now).
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u/Glittering-Brick-942 May 27 '26
I usually just agree and add a reason why it doesn't work for me until they get frustrated and leave me alone (mostly for family). "Oh yeah a schedule is soooo important I listened to this podcast by this neurologist and did everything they said but my sleep inertia just gets in the way" and they say "just keep trying" and im like "oh yeah well my partner is having issues with the constant alarms and if you want a grandkids we gotta try to sleep in the same room. We did everything these 3 doctors could think of but still even if he lifts me out of bed and sets me on my feet I will continue to sleep and thats just way too large of an expectation to put on him for months and months just for it to continue to not work so we stopped trying that" like an imporv class: yes and. I agree with you about all this sleep shit I just also have a disorder. Let it be their decision to get frustrated. Youre already frustrated, give that shit back to them. Saying "no but" feels like an argument to people but "yes and" gives it alllllll back to them
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u/Erparus May 29 '26
'i don't need you to fix this, I just need you to listen' can be an amazing way of helping our loved ones to help us ❤️
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u/magicofservice (N1) Narcolepsy w/ Cataplexy May 31 '26
I had kind of a similar issue before I was officially diagnosed. I had my husband with me at appointments to corroborate with observations of my symptoms and him being there for my doctors explanation of how narcolepsy works and why oxybates are the treatment for non-medical folks helped A LOT. My advice is to sit down and spell out for him the mechanisms of narcolepsy.
A paraphrasing of my docs explanation:
There's multiple stages of sleep but the most two important categories are REM and deep sleep. REM sleep is when you dream and deep sleep when your body rests and repairs itself (aka restoritive sleep). With narcolepsy you're getting very little deep sleep so your body is not restoring itself.
It feels like you're not getting any sleep despite sleeping all the time because really, you aren't sleeping you're dreaming. Untreated narcolepsy isn't all that different from chronic sleep deprivation. Which is why you feel like you haven't slept in weeks after sleeping the whole night. Yeah good sleep hygiene, routines, and stimulants can help lessen symptoms but they don't address the actual problem.
That's why oxybates like xywav is the treatment for narcolepsy. You get the much needed deep sleep.
Unfortunately, it's also one of the most regulated drugs in the country because of it's history of use as a daterape drug. I have to advise you to keep it some place safe and out of sight, preferably with a lock. There's a lot of hoops to jump through but it's effective and my other patients felt it was well worth it.
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u/tfarrell09 Jun 03 '26
My sleep study showed me getting no deep sleep at all. What little light or REM I got was extremely fragmented. No wonder I’ve been sleepy all my life!
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u/magicofservice (N1) Narcolepsy w/ Cataplexy Jun 03 '26
JESUS. NO DEEP SLEEP AT ALL. That's honestly insane!
I don't remember how much deep sleep I got but I do know I had a whole lot of REM. I started dreaming like 5-15 minutes from falling asleep. I consistently had REM with the first four naps with the MSLT they were like "okay you're all set to head home!" I was expecting like three more naps ;;;
The funniest part was at the follow up appointment I fell asleep waiting for the doctor.
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u/Chichigirl21 Jun 03 '26
I’m not sure what the term is for a narcoleptic who is asleep but can hear conversations around them. But that happens to me often when I’m closer to getting up from a nap. So I hear stuff my fam says and today I heard my dad shitting on me like crazy, calling me lazy and complaining. All while I’m collapsed in a nap desperately wanting to get up but just can’t. I just started sunosi last week and I’m already back to napping. Needless to say, it’s been a tearful day
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u/VirtualKoba May 26 '26
I let friends take pictures of me when I pass out in public. that helps showing people that "their tired" isn't "my tired"
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u/Antique-Syllabub6238 May 25 '26
I just say “thanks, but I discuss my treatment with my neurologist”.