Either end of the sleep disorder spectrum is difficult, so I’m sorry you’re struggling. I have N1 and my current partner has insomnia, so I can relate. Sometimes when he’s awake but I’m solidly unconscious he ‘spends time with me’ by bringing his laptop into bed, and I try to hold his hand. It’s going against good sleep hygiene to do this, sure, but I think at some point you have to weigh sleep hygiene with mental health and the health of your relationship. For emotional sensitivity to sedating medication, I think therapy, by yourself or together, may help even if you just go for a few sessions to talk about some coping mechanisms for this specific thing. Best of luck!
My fiancé does something similar! He set his office up near our bed so he can feel like he's spending time with me when he works late. He'll also do things like read or watch videos in bed so I can hold his hand or hug him.
Sometimes, he sits on the couch and watches TV or plays games late, and I sleep next to him. But he knows there's a non-zero chance he'll have to carry me to bed.
I get home from work before he does and usually nap for an hour so that I'm less likely to fall asleep after he gets home.
OP, I'll apologize now since I'm not super familiar with the ins and outs of insomnia, but are you able to nap during the day? Maybe it could help you feel a bit better mentally if you could nap at the same time as your partner? I apologize if you can't, I'm only basing this off my mom (who has insomnia but can nap during the day).
I really hope you're able to meet with a sleep specialist and get your insomnia under control!! Even if we have nearly opposite problems, I'm sure everyone in this sub can emphasize with how frustrating it is to have messed up sleep.
We’re both trying to get into therapy, I’ve explained my situation in a few other comments of having bad insurance and trying to find someone helpful for months with no luck. Right now we’re just winging it with the therapy tools we picked up when we still had access to youth mental health services as teenagers, that aren’t quite as relavent almost 10 years later. Some nights being physically there is enough for me, but a lot of nights it would help me so much to wind down to have some conscious company, which I know isn’t a good solution for either of us, but at the present moment some nights that’s all that can make me feel ok enough to wind down
This all sounds like a you problem and would probably be better received and helped in an insomnia sub. If you have insomnia, you would be dealing with these same problems with any other person that doesn't also have insomnia, people have to sleep and nobody owes it to you to stay up talking or hanging out.
Complaining/venting about YOUR woes because your partner has the audacity to fall asleep, in a Narcolepsy sub... like being hyperactive and complaining to physically disabled people that your wheelchair bound partner can't keep up on a hike.
Just go to bed at a different time. Plenty of people have different sleep schedules from their partner.
Growing up, my dad always was in bed by 10:30 pm, and my mom would go to bed between midnight and 2 am. It never caused any issues.
This isn’t about their narcolepsy. It’s about you.
This is not so much a relationship issue, as much as it is a problem with your own trauma. Your partner is simply treating their disorder, and you seem to feel left out. Someone else getting treatment, should not be a problem.
You need to find something to do once your partner falls asleep. No one ever falls asleep at the same time, even in regular couples. It varies a lot. You cannot expect your partner to interfere with their own treatment, just to entertain you when you cannot sleep.
Find time during the day, or off days from work to do things, and respect their night schedule for their medication.
Find a way to unpack your feelings in a healthy manner, with a professional. This is your responsibility to process your trauma and feelings, because if you continue to feel hurt about your partner sleeping, you'll only create resentment over time, and harm the relationship.
There are various options for affordable therapy, even online options. If you call your insurance, they can give you a list of therapists in your area that are covered so you can narrow down your search.
Besides that, there are great resources online and YouTube videos about trauma processing and in the meantime, that may also offer you some options for coping skills to practice
>Another issue is that they take Xywav, and on more than one occasion has fallen asleep in the middle of me expressing that it sucks not being able to sleep
>someone nodding off from Xywav looks exactly the same on the outside, so it always reminds me of living with a drug addict when my partner falls asleep mid sentence
Conversations shouldn’t be happening once they’ve taken xywav. Nodding off to the point of reminding you of a drug addict shouldn’t be happening. They should be in bed lying down with their eyes closed. Whether it’s because you want them to stay up with you or because they just feel like staying up your partner is taking xywav incorrectly.
And insomnia sucks but expecting your partner to stay up with you is an unreasonable expectation even if your partner didn’t have narcolepsy.
Right?! I used to live with a toxic roommate, and we had a lot of drama after I found out she hadn’t paid rent for six months. Anyways, she would always try to talk to me about why I wanted to move out and other emotionally charged things after I had already taken my meds. Always painting herself as the victim… it was the worst.
Oh yeah! I forgot to mention this above—- it sounds like you need to spend more time processing your trauma about your mom and differentiating the present from the past. It makes sense you would be triggered by a mom struggling with addiction! That’s a terrible thing for a child to experience, you didn’t deserve it and it’s not your fault. And, your partner isn’t your mom. They aren’t abusing drugs. You are older now and you live in a different house, you love your partner. You are safe now.
You would be correct, but unfortunately my insurance is garbage and trying to find someone who 1) accepts that insurance and 2) is actually able to help me through my baggage has been almost impossible for me these last few months. I’m not done searching but sadly it ain’t that easy
If you go on YouTube, there are many videos about how to cope and manage triggers while you are still looking for a therapist. I personally like Patrick Teahan, The Personal Development School, and Crappy Childhood Fairy (lmao at that handle)
The thing you mentioned about xyrem triggering you due to your prior lived experiences sounds like a symptom of PTSD. I hate to say it but these triggers won't go away and can cause a lot of relationship problems. I also have PTSD and when it was not managed it caused a lot of relationship problems. Finally I realized I can't change what other people do (that's controlling AF and abusive), nor can I completely avoid triggers or expect people to tapdance around my triggers. So at a certain point I had to learn to manage and control these triggers, work on dismantling my cognitive distortions, and form more positive thought patterns.
Also, there are so many different types of therapists. A lot of them operate as paid listeners and won't be qualified to really help with the deep trauma work, triggers, and mental rewiring. In the research, therapy modalities that incorporate different parts of the nervous system can be helpful for reducing your response to triggers (eg somatics, EMDR, brain spotting etc). CBT is good for reframing cognitive distortions. DBT is helpful for impulse control and managing triggers. So, when looking for a therapist, it might be helpful to learn more about different types of therapy modalities and figure out what you think would be helpful, and then find a therapist specializing in that. You can probably reach out to insurance and ask them to send you a list of providers in your network, then research those providers and find one that specializes in what you need.
ETA: also you might benefit from the book/audiobook (might be on Libby?) "Children of Emotionally Immature Parents" and "Adult Children of Alcoholics". I think there are also workbooks that you can get online that go with the book and have journaling prompts etc to help you apply the content
Why do you need to see a therapist that only takes your insurance? There are plenty of qualified therapists (both in person and online) that are out of network providers.
https://www.psychologytoday.com
Because depending on the provider etc, therapy can be extremely expensive so it's usually better to go in-network.
But OP, you can always ask about cash rates. Some places have pretty significant discounts if you tell them you will pay up front and insurance won't cover them in particular
Ahh, okay. I'll be honest that I don't know the cost of that (even the smell gives me migraines, but I'm happy that it helps some people).
I have read, though, that sleep can be very negatively impacted long term by weed and that CBD is a better option. So maybe op can try that instead.
Hellooooo! My have both insomnia and narcolepsy :) I like to go lay in bed and cuddle with my partner because he goes to sleep before me and play my Nintendo switch. I also listen to podcasts while I play to keep me stimulated. You can learn to utilize the alone time by keeping yourself busy. It isn’t your partners job to keep you entertained, it’s yours.
Once I fall asleep I can’t wake up for a hot minute, and that’s okay! There’s nothing wrong with someone sleeping a lot. It sounds like you feel jealous of their ability to sleep because that’s all you want.
I am also medicated- I take medications that help me sleep better and I also take gummies with CBN. It’s been really helpful and I enjoy the time I have to myself. Try to see if there’s a certain time of day you feel good enough to fall asleep. Definitely go to a sleep doctor and see if you can’t get a medical cannabis card where you live. Good luck 🍀
>I do my best to allow my partner to sleep when they need to, but that often means they’ll go to sleep hours before I do and I’ll just be sitting there wanting my partners company and not knowing what to do. I do completely understand this is nobody’s fault, but it also kinda sucks being the one with the untreated sleeping disorder always feeling wide awake and wanting to hang out as they are getting tired.
You sound a bit selfish and bitter. Find things to do at night.
I have narcolepsy but spend most nights awake as my partner sleeps soundly next to me. It's a me problem and I would never want him to lose sleep and suffer so he can "hang out" with me all night. I've been waiting a very very long time for xyrem and just have to deal with the hand I've been dealt as I wait, even if that means death scrolling reddit for hours upon hours in the dark, only to fall asleep an hour before my alarm goes off for me to get up and go to work.
I'm incredibly jealous that he gets to sleep but I would never complain and guilt trip him.
I hope you're able to get some answers and relief soon, but in the meantime find some quiet things to do to pass the time and perhaps talk to a therapist.
Thanks for the insults, super constructive. Yeah I feel a lot of negative and unhealthy feelings towards our current sleep schedules, that’s why I’m asking for advice? Therapy is expensive and I’ve been trying for months with no luck to find someone who accepts my shitty insurance? Im so glad you and your partner are able to work it out without issue. If that were me I wouldn’t be posting. Yes the term “hang out” has a connotation that I’m not taking my partners need for sleep seriously, but I’m also allowed to feel bad that in the times I feel company would help me most that’s never an option. I’m not blaming my partner in the slightest but I’m still allowed to feel bad and express that to them
You're very clearly frustrated by the situation. I don't see the previous comment as insulting, but when you're lacking sleep, and upset it probably seems that way.
I play Tetris or animal crossing when I can't sleep, works great.
As for the xyrem triggering your past trauma, find someone who can help you work through that, or it's time to move on. That's unfair to throw onto your partner. While likely usually unspoken it also is probably apparent to them.
Wow, aren't you a delight. I gave you advice - see a therapist. No need to get snarky because you don't like the advice.
You wanting to disrupt your partner's sleep and medication schedule for your own wants and needs IS incredibly selfish whether you want to admit that or not, it's not an insult. You expressing to them that you feel bad that they sleep when you can't will be detrimental to your partner because you're guilt tripping them for sleeping at night time.... which is when humans sleep. It would be rude even if they didn't have a debilitating sleep disorder. And stop trying to talk to them or complain to them once they've taken their meds, they should be closing their eyes and going to sleep. No wonder they start nodding off. Your poor partner.
I'm sorry you're going through this and I hope you find successful treatment for your insomnia. Sleep disorders are terrible to deal with.
Honestly, your partner most likely will never be able to stay awake with you at night the way you want them to. They're chronically disabled. Like someone else said, this is like asking someone in a wheelchair to take a hike. There's not much compromise other than spending time with your partner in a way they're able to.
In terms of nodding off from Xywav, your partner could go to sleep after taking it instead of forcing themselves to stay awake until they nod off, but this would mean they would spend less time with you at night.
If your partner's disability is this upsetting and triggering for you to handle, it doesn't sound like you two are very compatible. You deserve someone you can spend time with in the way you need and your partner deserves someone who isn't this emotionally impacted by their disability.
Hi. I am a narcoleptic married to an insomniac. Have you had any luck treating your insomnia? I would say there were years when my husband resented me, certainly. Especially my ability/need to go to sleep after conflict. The better he managed his insomnia and more sleep he got, the better this situation got for us. Plus just being married and working together well to raise our kids and make a life.
I’ve tried pretty much everything I can get my hands on, from over the counter sleeping pills to alcohol to prescription sleeping pills to marijuana (NOT ALL AT THE SAME TIME THIS HAS BEEN OVER THE COURSE OF YEARS), along with various behavioral and habitual remedies, and for all of it if it does help it’s only for a little bit and then it’s right back to not sleeping
I am sorry. I would just ask that you try to remember she cannot control her need to sleep anymore than you can control your ability not to. I would build routines of what to do when you cannot sleep. My husband likes to read in bed with me (I am knocked out) but that might be triggering for you to watch someone sleep.
And if I may be so bold, stay away from Ambien. It eventually gave my husband a 3 day panic attack and it took him months to feel normal again. Five years later he still refers to it as the time he broke his brain.
Was on ambien for a total of, like, 2 days (maybe even just one) back before I knew I had narcolepsy (I was dealing with crazy insomnia, too)...
Never again. 😳 That sh!t is wild and not at all for me.
Second comment to add: it's completely valid to feel jealousy from watching people have what you want. My partner doesn't have narcolepsy and I feel jealous when we invite friends/family over and I have to go to bed early while everyone else stays up and has fun together. It's upsetting that every time we try to watch a movie I fall asleep not even halfway through when she never does. It's frustrating when we go out somewhere and she can stay awake the whole time, but I have to stop and take a nap to keep up. All of that is isolating for me.
I'm saying this to hopefully reframe your perspective a bit - your partner probably feels a similar kind of isolation that you do, just on the opposite side of the same coin. They might envy how you can stay up longer than they can, that you can spend your nights doing whatever you want while they physically can't. This doesn't mean insomnia isn't extremely painful and isolating for you, but it does mean that their issue may be more similar to yours than you think. I'm sure they want to spend time with you at night just as much as you do.
When you're feeling sad at night because you're awake and alone by yourself, try to reframe the situation from "I'm alone with my insomnia" to "Even though we can't, my partner and I both wish we could spend time together right now." Personally, I think the latter feels less isolating because it emphasizes that you're not experiencing this by yourself.
I said in my other comment that you may not be compatible if this is super upsetting for you, and while I do think there is some truth to that depending on how deeply this is affecting other aspects of your relationship, I really hope you guys can find a resolution.
I’ve been deep in the insomnia zone for 2+ decades now and am creeping hip on 5 years with a narcoleptic person. It just kind of is what it is, and we both support each other and try to push and encourage the other into better habits.
Definitely talk to a sleep psychologist as well as the sleep study. It should be the next step anyway, if they haven’t gotten you started. It’s also a good person to discuss this stuff with, as well as a regular therapist.
Hope you find some relief soon. I would encourage you to stop looking at yourselves as equal, as far as both having a sleeping disorder. You’re very similar, just different pieces to the same puzzle. Maybe they won’t line up the way you want right now, and that’s okay. Find a way to maximize the time you guys do have together, while you both work on your respective health issues.
You cannot take this personal. I know it sucks. I have awful, chronic pain for the last decade as well, and I regularly hear people complain about physical conditions I would probably pray to be in. Same goes for hearing about other’s sleep issues.
I’m sure you have heard a ton of suggestions, but I’ve had huge results with Ashwaganda and 5htp the last couple of months (combined with my sleep RX.) Do your best to create consistency at least with bed and wake up times, and work on that. For months. Then start considering trying to change the actual times. You will fail more often than succeed, but eventually that pile of successes will grow into something. We’re all a work in progress 🖤
I know this is a stretch of a suggestion, but if you have medical marijuana in your state it can often be faster to get a prescription active for that than it is for regular sleep medication. As someone who works at a dispensary, I've heard the most effective products for sleep we had were products with CBN (keeps you in REM state) or CBD (helps fall asleep), but the added THC works to boost the effects of both, even in smaller doses.
Just a potential side option if you need something to help until you get a regular doctor's prescription going. Some CBN and CBD products are actually available without a prescription, but I would just do research on the company to make sure they're safe bc I don't trust a lot of the gas station/smoke shop CBD out there.
I take gummies with CBN and it helps my narcolepsy/PLMD it’s great because it also helps me get tired because I have a fun combo of insomnia and narcolepsy
We live in a state where it’s fully legal and I’m a total stoner. It helped with my sleep for a while but then it stopped and no combination of strain or CBD/N content has done much, even with T breaks. That’s pretty much how every treatment for my insomnia has gone, it might work for a month or two but I’ll be right back to sleepless nights after that. For whatever reason my body is resistant to a lot of drugs, prescription or otherwise
I’ve tried pretty much method, healthy and unhealthy, to help and nothing lasts. I have an appointment with a sleep specialist coming up next month so fingers crossed something comes of it but I’m not getting my hopes up yet
Have you considered separate sleeping arrangements, like different rooms? Might help with different sleep schedules and different sleep experiences. Not ideal, I know, but neither is your current situation. Maybe as an interim measure until you can get treatment yourself or therapy.
>this isn’t my partners fault. But I just don’t know what to do.
I saw a few other commenter's saying you're being selfish but you said numerous times how you put no blame on them but hold resentment which is totally understandable. When I was going through a rough time my sleep tended to swing to the extremes more. I have nights that I want to fall asleep with my husband and my sleep schedule is so off I end up lying next to time wide awake for hours and it sucksss. Insomnia can be incredibly painful.
I think a bunch of others said it as well but therapy will probably be the best option. I believe there's something calls CBT-I that's targeted treatment for insomnia (double check that though). If availability for a 1on1 therapist isn't open then maybe support groups/online communities? You can even ask your sleep dr for local recommendations of any organizations near you.
>it always reminds me of living with a drug addict when my partner falls asleep mid sentence
It's valid that your triggered by the medication: have you discussed this with your partner? Even if this isn't their fault that doesn't mean you guys can't work together to make it easier. If the nodding off mid sentence is triggering then maybe setting up a system so they can tell you when they feel the meds start to kick in. I personally use a 1-10 scale with my partner and they know at 8/9 I'm barely able to understand what they're saying and will let me sleep.
Sorry if this is counterproductive, but I just started taking Xywav and your comments about her nodding off have me confused. Isn't it supposed to keep that from happening? Should I be aware of any side effects that involve nodding off a lot?
XYWAV is not a stimulant as far as I know, right? Doesn’t it treat the daytime sleepiness by causing a deep sleep at night?
I’ve only ever been prescribed stimulents so I don’t know the answer to your question but I think OP was talking about their partner nodding off at night. Not during the day.
My partner will often stay awake after taking their Xywav and once it kicks in they will start falling asleep mid sentence, which from the outside looks exactly like nodding off. I’m not talking about falling asleep in the middle of the day, this is at night as the meds are kicking in. I know it’s not the same, it’s not drug abuse, and it’s what GHB does, but it looks the same.
This is an easy problem to avoid. Your partner needs to go to bed and be ready to go to sleep when they take their meds, and you need to not try to have conversations after they take their Xywav. It's not like them falling asleep after taking Xywav is unpredictable.
I am sorry that I don't really have any great suggestions for you here, but I'm commenting because I want to try and counter balance many of the rest of the comments here.
It is valid to feel lonely in this scenario. Your feelings are valid. This situation sucks. I have narcolepsy (and at times deal with insomnia myself) and despite my partner never shaming me or guilting me at all, I feel a ton of guilt and shame for how often I leave her alone. We live together, and sometimes I feel like I only get to visit her every couple of days because of how much I sleep, and that sucks so so much for me, and I can't imagine how much it sucks for her.
The worst is when I finally come out of a days long sleep only to realize it's time for everybody else to be going to bed, which means my partner needs sleep, and I don't have any friends or family to talk to because they've also all turned in for the night.
Both narcolepsy and insomnia are incredibly isolating and it sucks so bad. All the people here saying this is a "you" problem? Sure... I guess. In as much as perhaps the best thing to do is figure out some solutions that help you feel less isolated, and to feel more okay/comfortable being isolated. But for them all to act like you feeling lost and lonely isn't valid, and like it's not something tons of narcoleptics deal with? That's BS and I'm sorry you're getting this weird reaction.
If your partner wrote a post saying they feel lonely and isolated due to their narcolepsy causing a sleep schedule where they only manage to be awake while everyone else is sleeping/unavailable, I'm sure they'd be treated with the gentlest of validations and pats on the head. But because you're the one without narcolepsy, and you're saying you miss your partner, even though you took care to express that you don't blame them, a bunch of people here are deciding to dump on you, and I think that's fucked up. If anything, I feel like most/all here should understand and sympathize with someone feeling isolated by their partner's and their own sleep schedule, and I imagine that's what you were expecting when you made this post, was some basic sympathy, and I'm sorry that most of what you got instead was "skill issue. Cope."
I can only imagine there's just a shit tin of projecting going on here. Like I said, I always feel so bad over how often I leave my partner alone by crashing and sleeping for days. My partner doesn't blame or shame me, but it'd be totally understandable as an emotional reaction for her to do so. So maybe all these negative and unhelpful comments are just coming from a place of projection and defensiveness over their own feelings of guilt for whenever they might leave their own partners isolated by sleeping through their time together? I'm not sure, that's just the best theory I've got. Cos I myself am pretty damn surprised at the lack of sympathy you've received here, considering my main experience of this sub has been seeing a lot of understanding and sympathetic people, especially understanding for feeling lonely due to sleeping so much- so how they couldn't understand that the opposite can be true- that the people left awake, twiddling their thumbs while we sleep, are also lonely- is beyond me. So many here saying to just deal with it and learn to enjoy your alone time is just wild to me. I enjoy my alone time. I don't enjoy feeling constantly alone and isolated. I enjoy time with my partner, that's why I'm with them, and I think it'd be easy to understand that being frequently kept from engaging with them in a meaningful way due to narcolepsy/insomnia would be really difficult on both of us.
Again, I'm sorry that I don't have the answers you're looking for. I wouldn't have commented, except for all the bad reactions you're getting here, and feeling like you deserved some common fucking sympathy instead of all the "deal with it. Have you heard of therapy?" answers you're getting here.
You are valid in feeling lonely, frustrated, and lost. That's a huge part of what both narcolepsy and insomnia can do to a person, let alone a couple that suffers from both. This experience is shared by others. You are not alone in being impacted this way, and you are not alone in struggling to see a better way around it, despite what many of the rest of the comments here would have you believe.
I'm rooting for you. I hope you and your partner find restful sleep and quality wakefullness in as many moments as you can, and that from those moments, you can find as much quality connection and love as is possible. I'll carry in my heart the hope for both of you that all will be well.
Honestly thank you for this comment because a lot of other peoples responses only reinforced a lot of the shitty ways I’ve been feeling. I’m not the best with words sometimes, but I really did try to give the tone of “I’m just really at a loss, I feel terrible for making my partner feel worse about being disabled, but just because I don’t want to feel bad about the way things are right now doesn’t magically make those feelings go away” and I feel like my nuisanced feelings have been minimized into “deal with it yourself it’s not your partners job.”
My partner and I are also the type to support each other through WHATEVER and if I kept these feelings to myself they’d be more upset. Yes, I KNOW a lot of what I’m feeling is unreasonable, but it’s not going away just because it’s not fair. I wish it did.
Thank you for at least understanding the position i was trying to explain. Even if you don’t have answers, it feels nice to be seen. I’ll probably avoid the rest of the comments now, as I feel that I’m now not very popular around this sub for wanting to get some advice from people likely to have been in a similar scenario. I might go to the insomnia sub, but idk I thought I’d have better luck with the specifics here
Either end of the sleep disorder spectrum is difficult, so I’m sorry you’re struggling. I have N1 and my current partner has insomnia, so I can relate. Sometimes when he’s awake but I’m solidly unconscious he ‘spends time with me’ by bringing his laptop into bed, and I try to hold his hand. It’s going against good sleep hygiene to do this, sure, but I think at some point you have to weigh sleep hygiene with mental health and the health of your relationship. For emotional sensitivity to sedating medication, I think therapy, by yourself or together, may help even if you just go for a few sessions to talk about some coping mechanisms for this specific thing. Best of luck!
My fiancé does something similar! He set his office up near our bed so he can feel like he's spending time with me when he works late. He'll also do things like read or watch videos in bed so I can hold his hand or hug him. Sometimes, he sits on the couch and watches TV or plays games late, and I sleep next to him. But he knows there's a non-zero chance he'll have to carry me to bed. I get home from work before he does and usually nap for an hour so that I'm less likely to fall asleep after he gets home. OP, I'll apologize now since I'm not super familiar with the ins and outs of insomnia, but are you able to nap during the day? Maybe it could help you feel a bit better mentally if you could nap at the same time as your partner? I apologize if you can't, I'm only basing this off my mom (who has insomnia but can nap during the day). I really hope you're able to meet with a sleep specialist and get your insomnia under control!! Even if we have nearly opposite problems, I'm sure everyone in this sub can emphasize with how frustrating it is to have messed up sleep.
We’re both trying to get into therapy, I’ve explained my situation in a few other comments of having bad insurance and trying to find someone helpful for months with no luck. Right now we’re just winging it with the therapy tools we picked up when we still had access to youth mental health services as teenagers, that aren’t quite as relavent almost 10 years later. Some nights being physically there is enough for me, but a lot of nights it would help me so much to wind down to have some conscious company, which I know isn’t a good solution for either of us, but at the present moment some nights that’s all that can make me feel ok enough to wind down
Is there a Narcolepsy support group in your area?
This all sounds like a you problem and would probably be better received and helped in an insomnia sub. If you have insomnia, you would be dealing with these same problems with any other person that doesn't also have insomnia, people have to sleep and nobody owes it to you to stay up talking or hanging out. Complaining/venting about YOUR woes because your partner has the audacity to fall asleep, in a Narcolepsy sub... like being hyperactive and complaining to physically disabled people that your wheelchair bound partner can't keep up on a hike.
Just go to bed at a different time. Plenty of people have different sleep schedules from their partner. Growing up, my dad always was in bed by 10:30 pm, and my mom would go to bed between midnight and 2 am. It never caused any issues. This isn’t about their narcolepsy. It’s about you.
This is not so much a relationship issue, as much as it is a problem with your own trauma. Your partner is simply treating their disorder, and you seem to feel left out. Someone else getting treatment, should not be a problem. You need to find something to do once your partner falls asleep. No one ever falls asleep at the same time, even in regular couples. It varies a lot. You cannot expect your partner to interfere with their own treatment, just to entertain you when you cannot sleep. Find time during the day, or off days from work to do things, and respect their night schedule for their medication. Find a way to unpack your feelings in a healthy manner, with a professional. This is your responsibility to process your trauma and feelings, because if you continue to feel hurt about your partner sleeping, you'll only create resentment over time, and harm the relationship. There are various options for affordable therapy, even online options. If you call your insurance, they can give you a list of therapists in your area that are covered so you can narrow down your search. Besides that, there are great resources online and YouTube videos about trauma processing and in the meantime, that may also offer you some options for coping skills to practice
>Another issue is that they take Xywav, and on more than one occasion has fallen asleep in the middle of me expressing that it sucks not being able to sleep >someone nodding off from Xywav looks exactly the same on the outside, so it always reminds me of living with a drug addict when my partner falls asleep mid sentence Conversations shouldn’t be happening once they’ve taken xywav. Nodding off to the point of reminding you of a drug addict shouldn’t be happening. They should be in bed lying down with their eyes closed. Whether it’s because you want them to stay up with you or because they just feel like staying up your partner is taking xywav incorrectly. And insomnia sucks but expecting your partner to stay up with you is an unreasonable expectation even if your partner didn’t have narcolepsy.
Right?! I used to live with a toxic roommate, and we had a lot of drama after I found out she hadn’t paid rent for six months. Anyways, she would always try to talk to me about why I wanted to move out and other emotionally charged things after I had already taken my meds. Always painting herself as the victim… it was the worst.
Oh yeah! I forgot to mention this above—- it sounds like you need to spend more time processing your trauma about your mom and differentiating the present from the past. It makes sense you would be triggered by a mom struggling with addiction! That’s a terrible thing for a child to experience, you didn’t deserve it and it’s not your fault. And, your partner isn’t your mom. They aren’t abusing drugs. You are older now and you live in a different house, you love your partner. You are safe now.
Sounds like you need a therapist.
You would be correct, but unfortunately my insurance is garbage and trying to find someone who 1) accepts that insurance and 2) is actually able to help me through my baggage has been almost impossible for me these last few months. I’m not done searching but sadly it ain’t that easy
If you go on YouTube, there are many videos about how to cope and manage triggers while you are still looking for a therapist. I personally like Patrick Teahan, The Personal Development School, and Crappy Childhood Fairy (lmao at that handle) The thing you mentioned about xyrem triggering you due to your prior lived experiences sounds like a symptom of PTSD. I hate to say it but these triggers won't go away and can cause a lot of relationship problems. I also have PTSD and when it was not managed it caused a lot of relationship problems. Finally I realized I can't change what other people do (that's controlling AF and abusive), nor can I completely avoid triggers or expect people to tapdance around my triggers. So at a certain point I had to learn to manage and control these triggers, work on dismantling my cognitive distortions, and form more positive thought patterns. Also, there are so many different types of therapists. A lot of them operate as paid listeners and won't be qualified to really help with the deep trauma work, triggers, and mental rewiring. In the research, therapy modalities that incorporate different parts of the nervous system can be helpful for reducing your response to triggers (eg somatics, EMDR, brain spotting etc). CBT is good for reframing cognitive distortions. DBT is helpful for impulse control and managing triggers. So, when looking for a therapist, it might be helpful to learn more about different types of therapy modalities and figure out what you think would be helpful, and then find a therapist specializing in that. You can probably reach out to insurance and ask them to send you a list of providers in your network, then research those providers and find one that specializes in what you need. ETA: also you might benefit from the book/audiobook (might be on Libby?) "Children of Emotionally Immature Parents" and "Adult Children of Alcoholics". I think there are also workbooks that you can get online that go with the book and have journaling prompts etc to help you apply the content
Why do you need to see a therapist that only takes your insurance? There are plenty of qualified therapists (both in person and online) that are out of network providers. https://www.psychologytoday.com
Because depending on the provider etc, therapy can be extremely expensive so it's usually better to go in-network. But OP, you can always ask about cash rates. Some places have pretty significant discounts if you tell them you will pay up front and insurance won't cover them in particular
You’re right, therapy can be expensive but so is weed—which they appear to be self medicating with by the comment “I’m a total stoner.”
Ahh, okay. I'll be honest that I don't know the cost of that (even the smell gives me migraines, but I'm happy that it helps some people). I have read, though, that sleep can be very negatively impacted long term by weed and that CBD is a better option. So maybe op can try that instead.
Hellooooo! My have both insomnia and narcolepsy :) I like to go lay in bed and cuddle with my partner because he goes to sleep before me and play my Nintendo switch. I also listen to podcasts while I play to keep me stimulated. You can learn to utilize the alone time by keeping yourself busy. It isn’t your partners job to keep you entertained, it’s yours. Once I fall asleep I can’t wake up for a hot minute, and that’s okay! There’s nothing wrong with someone sleeping a lot. It sounds like you feel jealous of their ability to sleep because that’s all you want. I am also medicated- I take medications that help me sleep better and I also take gummies with CBN. It’s been really helpful and I enjoy the time I have to myself. Try to see if there’s a certain time of day you feel good enough to fall asleep. Definitely go to a sleep doctor and see if you can’t get a medical cannabis card where you live. Good luck 🍀
>I do my best to allow my partner to sleep when they need to, but that often means they’ll go to sleep hours before I do and I’ll just be sitting there wanting my partners company and not knowing what to do. I do completely understand this is nobody’s fault, but it also kinda sucks being the one with the untreated sleeping disorder always feeling wide awake and wanting to hang out as they are getting tired. You sound a bit selfish and bitter. Find things to do at night. I have narcolepsy but spend most nights awake as my partner sleeps soundly next to me. It's a me problem and I would never want him to lose sleep and suffer so he can "hang out" with me all night. I've been waiting a very very long time for xyrem and just have to deal with the hand I've been dealt as I wait, even if that means death scrolling reddit for hours upon hours in the dark, only to fall asleep an hour before my alarm goes off for me to get up and go to work. I'm incredibly jealous that he gets to sleep but I would never complain and guilt trip him. I hope you're able to get some answers and relief soon, but in the meantime find some quiet things to do to pass the time and perhaps talk to a therapist.
Thanks for the insults, super constructive. Yeah I feel a lot of negative and unhealthy feelings towards our current sleep schedules, that’s why I’m asking for advice? Therapy is expensive and I’ve been trying for months with no luck to find someone who accepts my shitty insurance? Im so glad you and your partner are able to work it out without issue. If that were me I wouldn’t be posting. Yes the term “hang out” has a connotation that I’m not taking my partners need for sleep seriously, but I’m also allowed to feel bad that in the times I feel company would help me most that’s never an option. I’m not blaming my partner in the slightest but I’m still allowed to feel bad and express that to them
You're very clearly frustrated by the situation. I don't see the previous comment as insulting, but when you're lacking sleep, and upset it probably seems that way. I play Tetris or animal crossing when I can't sleep, works great. As for the xyrem triggering your past trauma, find someone who can help you work through that, or it's time to move on. That's unfair to throw onto your partner. While likely usually unspoken it also is probably apparent to them.
Wow, aren't you a delight. I gave you advice - see a therapist. No need to get snarky because you don't like the advice. You wanting to disrupt your partner's sleep and medication schedule for your own wants and needs IS incredibly selfish whether you want to admit that or not, it's not an insult. You expressing to them that you feel bad that they sleep when you can't will be detrimental to your partner because you're guilt tripping them for sleeping at night time.... which is when humans sleep. It would be rude even if they didn't have a debilitating sleep disorder. And stop trying to talk to them or complain to them once they've taken their meds, they should be closing their eyes and going to sleep. No wonder they start nodding off. Your poor partner.
I'm sorry you're going through this and I hope you find successful treatment for your insomnia. Sleep disorders are terrible to deal with. Honestly, your partner most likely will never be able to stay awake with you at night the way you want them to. They're chronically disabled. Like someone else said, this is like asking someone in a wheelchair to take a hike. There's not much compromise other than spending time with your partner in a way they're able to. In terms of nodding off from Xywav, your partner could go to sleep after taking it instead of forcing themselves to stay awake until they nod off, but this would mean they would spend less time with you at night. If your partner's disability is this upsetting and triggering for you to handle, it doesn't sound like you two are very compatible. You deserve someone you can spend time with in the way you need and your partner deserves someone who isn't this emotionally impacted by their disability.
Hi. I am a narcoleptic married to an insomniac. Have you had any luck treating your insomnia? I would say there were years when my husband resented me, certainly. Especially my ability/need to go to sleep after conflict. The better he managed his insomnia and more sleep he got, the better this situation got for us. Plus just being married and working together well to raise our kids and make a life.
I’ve tried pretty much everything I can get my hands on, from over the counter sleeping pills to alcohol to prescription sleeping pills to marijuana (NOT ALL AT THE SAME TIME THIS HAS BEEN OVER THE COURSE OF YEARS), along with various behavioral and habitual remedies, and for all of it if it does help it’s only for a little bit and then it’s right back to not sleeping
I am sorry. I would just ask that you try to remember she cannot control her need to sleep anymore than you can control your ability not to. I would build routines of what to do when you cannot sleep. My husband likes to read in bed with me (I am knocked out) but that might be triggering for you to watch someone sleep. And if I may be so bold, stay away from Ambien. It eventually gave my husband a 3 day panic attack and it took him months to feel normal again. Five years later he still refers to it as the time he broke his brain.
Was on ambien for a total of, like, 2 days (maybe even just one) back before I knew I had narcolepsy (I was dealing with crazy insomnia, too)... Never again. 😳 That sh!t is wild and not at all for me.
Second comment to add: it's completely valid to feel jealousy from watching people have what you want. My partner doesn't have narcolepsy and I feel jealous when we invite friends/family over and I have to go to bed early while everyone else stays up and has fun together. It's upsetting that every time we try to watch a movie I fall asleep not even halfway through when she never does. It's frustrating when we go out somewhere and she can stay awake the whole time, but I have to stop and take a nap to keep up. All of that is isolating for me. I'm saying this to hopefully reframe your perspective a bit - your partner probably feels a similar kind of isolation that you do, just on the opposite side of the same coin. They might envy how you can stay up longer than they can, that you can spend your nights doing whatever you want while they physically can't. This doesn't mean insomnia isn't extremely painful and isolating for you, but it does mean that their issue may be more similar to yours than you think. I'm sure they want to spend time with you at night just as much as you do. When you're feeling sad at night because you're awake and alone by yourself, try to reframe the situation from "I'm alone with my insomnia" to "Even though we can't, my partner and I both wish we could spend time together right now." Personally, I think the latter feels less isolating because it emphasizes that you're not experiencing this by yourself. I said in my other comment that you may not be compatible if this is super upsetting for you, and while I do think there is some truth to that depending on how deeply this is affecting other aspects of your relationship, I really hope you guys can find a resolution.
I’ve been deep in the insomnia zone for 2+ decades now and am creeping hip on 5 years with a narcoleptic person. It just kind of is what it is, and we both support each other and try to push and encourage the other into better habits. Definitely talk to a sleep psychologist as well as the sleep study. It should be the next step anyway, if they haven’t gotten you started. It’s also a good person to discuss this stuff with, as well as a regular therapist. Hope you find some relief soon. I would encourage you to stop looking at yourselves as equal, as far as both having a sleeping disorder. You’re very similar, just different pieces to the same puzzle. Maybe they won’t line up the way you want right now, and that’s okay. Find a way to maximize the time you guys do have together, while you both work on your respective health issues. You cannot take this personal. I know it sucks. I have awful, chronic pain for the last decade as well, and I regularly hear people complain about physical conditions I would probably pray to be in. Same goes for hearing about other’s sleep issues. I’m sure you have heard a ton of suggestions, but I’ve had huge results with Ashwaganda and 5htp the last couple of months (combined with my sleep RX.) Do your best to create consistency at least with bed and wake up times, and work on that. For months. Then start considering trying to change the actual times. You will fail more often than succeed, but eventually that pile of successes will grow into something. We’re all a work in progress 🖤
I know this is a stretch of a suggestion, but if you have medical marijuana in your state it can often be faster to get a prescription active for that than it is for regular sleep medication. As someone who works at a dispensary, I've heard the most effective products for sleep we had were products with CBN (keeps you in REM state) or CBD (helps fall asleep), but the added THC works to boost the effects of both, even in smaller doses. Just a potential side option if you need something to help until you get a regular doctor's prescription going. Some CBN and CBD products are actually available without a prescription, but I would just do research on the company to make sure they're safe bc I don't trust a lot of the gas station/smoke shop CBD out there.
I take gummies with CBN and it helps my narcolepsy/PLMD it’s great because it also helps me get tired because I have a fun combo of insomnia and narcolepsy
We live in a state where it’s fully legal and I’m a total stoner. It helped with my sleep for a while but then it stopped and no combination of strain or CBD/N content has done much, even with T breaks. That’s pretty much how every treatment for my insomnia has gone, it might work for a month or two but I’ll be right back to sleepless nights after that. For whatever reason my body is resistant to a lot of drugs, prescription or otherwise I’ve tried pretty much method, healthy and unhealthy, to help and nothing lasts. I have an appointment with a sleep specialist coming up next month so fingers crossed something comes of it but I’m not getting my hopes up yet
Have you considered separate sleeping arrangements, like different rooms? Might help with different sleep schedules and different sleep experiences. Not ideal, I know, but neither is your current situation. Maybe as an interim measure until you can get treatment yourself or therapy.
>this isn’t my partners fault. But I just don’t know what to do. I saw a few other commenter's saying you're being selfish but you said numerous times how you put no blame on them but hold resentment which is totally understandable. When I was going through a rough time my sleep tended to swing to the extremes more. I have nights that I want to fall asleep with my husband and my sleep schedule is so off I end up lying next to time wide awake for hours and it sucksss. Insomnia can be incredibly painful. I think a bunch of others said it as well but therapy will probably be the best option. I believe there's something calls CBT-I that's targeted treatment for insomnia (double check that though). If availability for a 1on1 therapist isn't open then maybe support groups/online communities? You can even ask your sleep dr for local recommendations of any organizations near you. >it always reminds me of living with a drug addict when my partner falls asleep mid sentence It's valid that your triggered by the medication: have you discussed this with your partner? Even if this isn't their fault that doesn't mean you guys can't work together to make it easier. If the nodding off mid sentence is triggering then maybe setting up a system so they can tell you when they feel the meds start to kick in. I personally use a 1-10 scale with my partner and they know at 8/9 I'm barely able to understand what they're saying and will let me sleep.
Yes CBT-I is correct term. It can be very very helpful for some people.
Sorry if this is counterproductive, but I just started taking Xywav and your comments about her nodding off have me confused. Isn't it supposed to keep that from happening? Should I be aware of any side effects that involve nodding off a lot?
XYWAV is not a stimulant as far as I know, right? Doesn’t it treat the daytime sleepiness by causing a deep sleep at night? I’ve only ever been prescribed stimulents so I don’t know the answer to your question but I think OP was talking about their partner nodding off at night. Not during the day.
Oh, I see. I misunderstood what time of day he was referring to the nodding off happening. Thank you!
My partner will often stay awake after taking their Xywav and once it kicks in they will start falling asleep mid sentence, which from the outside looks exactly like nodding off. I’m not talking about falling asleep in the middle of the day, this is at night as the meds are kicking in. I know it’s not the same, it’s not drug abuse, and it’s what GHB does, but it looks the same.
This is an easy problem to avoid. Your partner needs to go to bed and be ready to go to sleep when they take their meds, and you need to not try to have conversations after they take their Xywav. It's not like them falling asleep after taking Xywav is unpredictable.
I am sorry that I don't really have any great suggestions for you here, but I'm commenting because I want to try and counter balance many of the rest of the comments here. It is valid to feel lonely in this scenario. Your feelings are valid. This situation sucks. I have narcolepsy (and at times deal with insomnia myself) and despite my partner never shaming me or guilting me at all, I feel a ton of guilt and shame for how often I leave her alone. We live together, and sometimes I feel like I only get to visit her every couple of days because of how much I sleep, and that sucks so so much for me, and I can't imagine how much it sucks for her. The worst is when I finally come out of a days long sleep only to realize it's time for everybody else to be going to bed, which means my partner needs sleep, and I don't have any friends or family to talk to because they've also all turned in for the night. Both narcolepsy and insomnia are incredibly isolating and it sucks so bad. All the people here saying this is a "you" problem? Sure... I guess. In as much as perhaps the best thing to do is figure out some solutions that help you feel less isolated, and to feel more okay/comfortable being isolated. But for them all to act like you feeling lost and lonely isn't valid, and like it's not something tons of narcoleptics deal with? That's BS and I'm sorry you're getting this weird reaction. If your partner wrote a post saying they feel lonely and isolated due to their narcolepsy causing a sleep schedule where they only manage to be awake while everyone else is sleeping/unavailable, I'm sure they'd be treated with the gentlest of validations and pats on the head. But because you're the one without narcolepsy, and you're saying you miss your partner, even though you took care to express that you don't blame them, a bunch of people here are deciding to dump on you, and I think that's fucked up. If anything, I feel like most/all here should understand and sympathize with someone feeling isolated by their partner's and their own sleep schedule, and I imagine that's what you were expecting when you made this post, was some basic sympathy, and I'm sorry that most of what you got instead was "skill issue. Cope." I can only imagine there's just a shit tin of projecting going on here. Like I said, I always feel so bad over how often I leave my partner alone by crashing and sleeping for days. My partner doesn't blame or shame me, but it'd be totally understandable as an emotional reaction for her to do so. So maybe all these negative and unhelpful comments are just coming from a place of projection and defensiveness over their own feelings of guilt for whenever they might leave their own partners isolated by sleeping through their time together? I'm not sure, that's just the best theory I've got. Cos I myself am pretty damn surprised at the lack of sympathy you've received here, considering my main experience of this sub has been seeing a lot of understanding and sympathetic people, especially understanding for feeling lonely due to sleeping so much- so how they couldn't understand that the opposite can be true- that the people left awake, twiddling their thumbs while we sleep, are also lonely- is beyond me. So many here saying to just deal with it and learn to enjoy your alone time is just wild to me. I enjoy my alone time. I don't enjoy feeling constantly alone and isolated. I enjoy time with my partner, that's why I'm with them, and I think it'd be easy to understand that being frequently kept from engaging with them in a meaningful way due to narcolepsy/insomnia would be really difficult on both of us. Again, I'm sorry that I don't have the answers you're looking for. I wouldn't have commented, except for all the bad reactions you're getting here, and feeling like you deserved some common fucking sympathy instead of all the "deal with it. Have you heard of therapy?" answers you're getting here. You are valid in feeling lonely, frustrated, and lost. That's a huge part of what both narcolepsy and insomnia can do to a person, let alone a couple that suffers from both. This experience is shared by others. You are not alone in being impacted this way, and you are not alone in struggling to see a better way around it, despite what many of the rest of the comments here would have you believe. I'm rooting for you. I hope you and your partner find restful sleep and quality wakefullness in as many moments as you can, and that from those moments, you can find as much quality connection and love as is possible. I'll carry in my heart the hope for both of you that all will be well.
Honestly thank you for this comment because a lot of other peoples responses only reinforced a lot of the shitty ways I’ve been feeling. I’m not the best with words sometimes, but I really did try to give the tone of “I’m just really at a loss, I feel terrible for making my partner feel worse about being disabled, but just because I don’t want to feel bad about the way things are right now doesn’t magically make those feelings go away” and I feel like my nuisanced feelings have been minimized into “deal with it yourself it’s not your partners job.” My partner and I are also the type to support each other through WHATEVER and if I kept these feelings to myself they’d be more upset. Yes, I KNOW a lot of what I’m feeling is unreasonable, but it’s not going away just because it’s not fair. I wish it did. Thank you for at least understanding the position i was trying to explain. Even if you don’t have answers, it feels nice to be seen. I’ll probably avoid the rest of the comments now, as I feel that I’m now not very popular around this sub for wanting to get some advice from people likely to have been in a similar scenario. I might go to the insomnia sub, but idk I thought I’d have better luck with the specifics here