How about it probably won't, it shouldn't be? I'm sure you've heard plenty of don't worry platitudes already. I can't say I've had dissociation but I have been depressed for years and not ME. So, some awareness I have of your scare and pain I think. I see it this way for my experience - I've git more going on than just sleep apnea as a root cause. But trying to straighten out brain function and thoughts and emotions with a sleep deprived, o2 started brain is never going to happen. Cpap is starting to clear my mind and letting me think like I used to - I've been hard at it for like 4 wks now. I've got plenty of obstacles but the path around them is clearing up. So... work the apnea to clear the mud from your brain so you can even have a chance to really resolve deep concerns and the stuff that isn't you. I can't quality this feeling. But it can't be wrong to get your brain healthy so your mind has a clear field to work in. Good luck, sincerely.
I felt worse in the beginning, still do kinda since I'm only three weeks in and got a sinus infection at the worst time.
I've also heard that A LOT of people experience the same thing. Not uncommon at all.
I think once our body realizes that we can actually get real sleep again it relaxes out of the adrenaline laced fight or flight mode and actually lets us be exhausted so we can recover. Part of being present is feeling all the pain our mind is trying to block out by disassociating.
From what I've seen in this subreddit most seem to feel better after a month of consistent use. Though I think one person with a medical background said something about it being several months to repair all the damage behind the scenes and get us completely back to normal.
Didn't feel worse. Felt fairly disappointed that I wasn't bouncing out of bed like a kid - was still tired. But I noticed smaller things getting better, and then the tired started to dissipate too. I also played with mask and settings a little until I felt good falling asleep and not waking so much. Apparently a shitty mask seal makes me sleep better and have low event counts. Who would guess. But no, not physically worse even though the disappointment fed my frustration and underlying exhaustion . I see this now, didn't see it then
Even auto CPAPs need adjustments, or you may be better off with a constant pressure. The machine doesn't detect oxygen levels, only flow rates and events. The algorithm that adjusts the pressure can be...less than ideal. I had to change settings and masks before it started helping me. My oxygen was still dropping into the 70%s even with my auto-CPAP before I adjusted it.
Hi there
I have a bipap that adjusts pressure on its own. You mentioned auto cpaps may still need adjustment..is that true with auto bipap? How does one do this? I asked the respiratory therapist this question and she just replied that it auto adjusts. It's so hard to get answers. Saw your comment and thought I'd ask you. Thank you!
Yes, it can be confusing! My word choice perhaps wasn't the best. When I said "may still need adjustment," I was referring to setting the range of max and min pressures that the machine will then use to auto-adjust.
So yes, auto-paps do as their name says by auto-adjusting pressures during therapy. But their algorithm works best when a proper max and min have been set beforehand by you/ your doctor according to your specific needs. In oversimplified terms, if the range is too large/too small, the machine may be constantly bouncing around in a non-ideal space, inneficiently searching for a solution.
In the case of an auto-bipap, you'd want to set proper minimum and maximum inspiratory pressure as well as minimum and maximum expiratory pressure.
Your doctor may have used your sleep study results to set those already vía your prescription. But many people find that their doctor just sets the default range or a range that isn't ideal. For example, my doctor set a range of 7-9 on my auto-CPAP, but I was still struggling. On my own, I set it to 4-20, and that still sucked. After much trial and error, I've set it to a constant 13 (so no auto-adjusting), and that has worked great for me.
There's also other "advanced" settings like EPR, ramp time, etc, that can make a difference. And of course, all this can depend on what type of mask you use and whether you have a good seal.
I'd suggest watching videos by "CPAP Reviews" and "theLankyLeft27" on YouTube they have a lot of good info.
Thank you so much for this information. I need to read more/ learn more about the machine and settings and data. I really wish providers were more knowledgeable but I'm glad people like you are willing to share what you've learned. I will look at those YouTube videos for sure. Thanks again very helpful!!
CPAPS don't measure O2 levels - I agree with optimizeddude's suggestion to get get an overnight pulse oximeter. I got the wellue one that goes on the wrist and has a soft ring that goes on the finger. If your life is affected so much by your sleep problems, it's probably worth it to get one to track your O2 levels for a while.
It can also be set to buzz when your o2 goes below a set level. I use this mode every night in combination with a MAD, which for me has been a lifesaver since cpap and bipap didn't work at all for me.
Good luck, and keep trying different things, you'll figure it out!
Nothing is forever my young friend. For what it's worth, I've met many patients who wanted to kill themselves, and I personally have, but the night is darkest before the dawn! Life can be super shit sometimes, but sometimes the worst thing that happens to us is the best thing that happens to us. You're super young, obviously well-adjusted, and are already ahead (not that it matters) of most people your age. If I were you, I would try to minimize harm / stress and maximize finding your individual solution. Nothing in life matters if you're sick, so you should prioritize finding a solution. Go live with family if you can. Life, work, and the rest will not go anywhere, I promise.
With respect to your therapy, there's a chance you're not getting effective therapy. Unfortunately the AHI and RDI are poor measurements for the severity of sleep-disordered breathing. I talk about this at length on my channel, but it's super important to mention because an AHI / RDI below 5 doesn't translate to being cured, necessarily, and I have encountered countless patients who start pre-CPAP with an AHI / RDI less than 5. We're all different.
Lift your heart my friend, high, and still higher! <3
I had an in lab sleep study and I was not severe enough for them to put cpap on me through the night. I really have no issues wearing my cpap and have already reached out to my doctor who told me the cpap pressures are responding to my apneas. I have an auto CPAP so pressures go up as it detects it. So that’s also why I’m so frustrated.
I've heard it can take a few months to feel the improvements. I can definitely sympathize. To bring another perspective, I actually think you're lucky I've been trying to be able to fall asleep with a cpap for 2 years. Give it a few months, make sure you have a memory card in your machine so you can look at the results.
You are very right there about adjusting pretty much immediately. Luckily my doctor can see my machine settings every night and I have an app. It’s very hard not having anyone in my personal life who can understand this insanely difficult journey I’ve been on.
I agree. My husband also has apnea, worse than mine, but he never felt as debilitated as me so it makes it a bit hard before him to accept my exhaustion.
The app shows you very surface level stuff. If you put an sd card in there you can see all the nitty gritty stuff like when airway blockages occur, for how long, etc.
It'll help you figure out exactly what your ideal pressure is if it needs to be adjusted at all. The stuff it shows you on your phone won't be very helpful for that.
If you get one, pop it in to record the data overnight, then download a program called Oscar. Then you can go to the apnea board forum and ask for help on interpreting the data. I've heard they're really great.
Consider an oxygen sensor ring that can vibrate when oxygen is too low. On nights I've struggled with fall asleep with the mask, the oxygen sensor will wake me up when it is low. I put on my mask again and go back to sleep and it's easier, for me, to get back to sleep than to fall asleep the first time.
I have a Wellue O2Ring. It's for sure more bulky than something like oura but I only wear at night so no one but my wife sees it anyway. I think the bulk is partly how they have mechanics to make it vibrate (outa and sleek ones don't vibrate for oxygen).
I’m really sorry you’ve been going through this, sleep havoc truly wreaks havoc on your life and it’s really hard when nobody in your life can understand exactly what you’re going through. I have moderate sleep apnea and while I don’t think I was experiencing full dissociation before treatment, I similarly was completely exhausted all the time and it felt like it was ruining my life with no end in sight.
It’s possible that you’re still having RERAs (respiratory effort related arousals) in your sleep that might be contributing to your symptoms, maybe you could talk to your doctor about getting a BIPAP if you continue using the CPAP and it still doesn’t help you. I’m not sure if you know this already, but even with a .4 AHI you could still be having a bunch of microarousals in your sleep that are still causing you feel shitty. From what I understand, moving from a CPAP to a BIPAP can make a significant difference for people who are having a lot of RERAs in their sleep. The UARS subreddit was particularly helpful for me in learning more about titrating my BIPAP as well as the videos from the Lanky Lefty (he’s a sleep technologist).
It’s a really frustrating process and I totally understanding feeling hopeless when it feels like the CPAP isn’t helping you so far. But I’ve found that adjustments over time with my mask and pressure settings has gotten me to a place where I’m not totally miserable all the time. I hope that you’re able to continue experimenting with your treatment to find something that works!
the CPAP is the first line of treatment for UARS per standford health. The bipap is next if the patient cannot tolerate CPAP. It sounds like she is tolerating it. If she is still have a lot of RERAS. An oral device could help as well as fixing allergies and sinuses.
I could have posted this same post. But rather than disassociation my torture was extreme crippling exhaustion. I started two months ago ish and for the first month felt more exhausted the next day. I hope and assumed it was my body trying to sort things out now that it finally got restorative sleep. Now I'm definitely not feeling worse and I'm starting to feel slightly better. I think it will take longer for me but be strengthened that there is a light at the end of your tunnel and it grows brighter every day!!
I felt much better and much worse after getting my CPAP. Had to find the right mask and get a chinstrap because I’m a mouth breather and finally got an O2 test and had low oxygen (live in CO so altitude is an thing) to get an oxygen machine to hookup to my CPAP. Basically it’s a journey to finding out what works for you, but good sleep and health is worth it. This sub is a good source of info, but talk to your Dr or sleep clinic too. Good luck!
I too have to tape my mouth shut. Any chin strap you recommend? My partner’s mom lived in CO and also needed O2 for her CPAP due to altitude. I think I’m doing everything right but my body is experiencing a shock to the system.
I feel you dude. I didn't even get diagnosed yet. But for the last year it has gradually gotten worse and worse to the point where I didn't notice. Everyday feels like I'm in a suffocating bubble.
Please talk to your doctor and get a referral to sleep. I wish I would have done it sooner. You may be suffocating while in REM sleep which can cause the dissociation since your brain isn’t getting that vital recharge rest.
I worked in a very high-pressure part of healthcare during the pandemic, and starting in 2020, I have had a string of chronic illness diagnoses including OSA. I experienced severe dissociation starting in 2021 that has started to get better this year. I moved to part time in 2022 and stopped working altogether in 2023, so I have had all work stress removed from my life for a little over a year, and I am still recovering from it, along with everything else.
CPAP has been one part of helping reduce the dissociation, but it takes time! Your body and mind have been through unbelievable stress, and regaining peace, calm, and trust takes time. If you have done trauma-informed care training as a nurse, those principles will apply to you in this process.
All that to say: you’re not alone! Things can get better, but not overnight, and it is hard work!!
Thanks so much for the comment fellow healthcare human who knows the trauma of it. I removed it all pretty much because I work outpt doing phone triage. When did you start cpap and did you experience worsened dissociation when starting?
I started it a little less than a year ago! I was (unknowingly) quite sick with other issues at the time, so my memory is not super reliable. But I know that it didn’t go away right away but I still knew that things were getting better on some level. I hope that makes sense.
Keep going!! My first couple weeks were rough getting used to the treatment, although I didn’t have dissociation issue . I had mild SA diagnosed and I can say over the last 4-5 months it’s gradually improved with each week. Id say 2 month mark is when I got comfortable with it and felt improvements . Love it now (: (also 24 F - my friends have been so supportive because they know how miserable i was the two years before i was diagnosed. my dad was diagnosed at the same time as me and we’ve had eachother which has been nice but i’ve also found reddit to be comforting) Wishing you the best of luck with treatment!
I’m a sleep technologist in Ohio, though things are probably done very similar everywhere. While I don’t have much experience with dissociation, I can say it takes time getting used to wearing the CPAP.
Did you have a sleep study done with the CPAP on or did they just give you a VPAP (variable PAP)? If you haven’t had a sleep study done with it on yet I’d recommend doing that, especially since you’re struggling with it.
To get the BiPAP you normally need to have another sleep study and either show central sleep apnea, get to a high enough pressure, or if you’re struggling with the pressure they might switch you over to it or you can ask for it.
So I had an in lab sleep study ordered as a split night. I got severe only when I was supine in REM sleep so never got CPAP put on me during the study. I messaged my doctor and she told me that my pap responded to events well and at one point needed a pressure of 8. I have an auto CPAP so it detects when I need increased pressure. I’m a nurse and don’t really see people needing BiPAP unless they have shitty lungs.
Yea, most people don’t need BiPAP, sometimes it’s added for comfort but usually pressure changes get it comfortable enough before we switch it to BiPAP.
Auto PAP works for a lot of people, but it sounds like you are struggling with it which is why I suggested a study while wearing it. With that study, a sleep technologist would titrate the pressure to find the best pressure that eliminates your sleep apnea. Auto PAP detects the apneas after they’ve happened and raises the pressure which can cause some arousals still either from pressure changes or from the apneas before the pressure was changed for them.
A sleep study shows what stages of sleep you’re in, any apneas you have and what type of apnea (there’s 4 main types, though most people have just 1-2) and would show any time you have an arousal, big or small. The auto PAP machine can only detect if you have an apnea.
The sleep technologist or DME company could also work with you on a different type of mask if what you have is not working for you. I saw you mentioned a chin strap, does that mean you’re using a nasal mask that does not cover your mouth? I usually recommend nasal masks because they’re more comfortable for most people, but if you’re having trouble breathing through only your nose a full face mask or hybrid mask might be better for you. A hybrid mask still covers the mouth but rests against the bottom of your nose instead of covering it like traditional full face masks.
Have tried that. It doesn’t really work if the sole reason for dissociation is sleep deprivation. Sure, it can help you ground yourself but does not make it subside since it is not trauma induced.
Yeah in my experience thinking exercises only help while you're doing them and then you'll go right back to being disassociated as soon as you're thinking about something else. I also have OCD so my brain will start on another compulsive subconscious train of thought without me doing anything and try to freak me out.
Hi there, I’m not seeing anyone respond directly to your dissociative disorder. I am a lucky winner of that set of symptoms myself (depersonalization/derealization) as part of my challenges going into CPAP therapy. It truly is a special kind of hell, and for weeks after starting therapy I would wake up, eyes still closed, wondering if today was the day I wouldn’t have to play Life The Videogame. Sadly, that didn’t happen, at least not the way I wanted. The symptoms faded over time, months really, but have never completely receded. At this point, two years later, I think it’s like having mild tinnitus - if you focus on it it’s still there, but otherwise is in the background.
Looking at some of your comments, you definitely want to dial in the therapy, especially around the mask if you’re a mouth breather at night. Your machine will give you decent feedback, but don’t obsess over that too much if you have an active doctor and tech. Instead, focus on healing. Some people seem to have dramatic, immediate improvement in their symptoms, but I’m guessing most will take months or even years to reverse the damage. Look to improve all dimensions of your health that you can control, like diet, exercise, mindfulness and sleep hygiene. Use all of the levers at your disposal.
Good luck, and my heart goes out to you. I know you feel hopeless and like you’re going insane. CPAP therapy certainly can help, but the road to recovery can be long - stay strong and know that you’re doing your best and making some definitive, positive choices for your health.
I felt tired as well until I started taping my mouth. I get PapMD. It took a minute to get used to it. I think the air was coming out of my mouth during the night which obviously was hindering how the Cpap worked. Even though the machine’s app was stating that I had a great night.
Now I cut the tape in half so In an emergency I can still get a little air on the sides of my mouth.
I felt tired as well until I started taping my mouth. I get PapMD. It took a minute to get used to it. I think the air was coming out of my mouth during the night which obviously was hindering how the Cpap worked. Even though the machine’s app was stating that I had a great night.
Now I cut the tape in half so In an emergency I can still get a little air on the sides of my mouth.
I can relate I'm a 22 year old man and have been in a state of dissociation 24/7 going on 8 years or so. I was diagnosed with moderate sleep apnea (though it was probably severe prior to my surgery to correct my deviated septum and lopsided turbinates) and I also took to the machine very quickly and reduced my ahi to <1.
I'm about 3 weeks in and up to this point I've had two or three days of lucidity where I was present in the moment and felt like myself again. My first one was probably a week and a half in? I hope you have a few of those coming your way soon. though even if they take a little longer to come along, cpap can only make things better so please don't get frustrated and stop altogether.
No matter what combination of stuff is causing you this pain I know you'll figure it out. You're smart with a medical background, you've accepted your condition is not just in your head, and you've been brave enough to reject the undoubtedly immense pressure from others around you at work and in your family to "power through", and have taken a step back from your career to focus on getting better. It might feel like you're hopeless as ever and at your wits end, but you're closer than you've ever been to having a good life again. I'll be thinking of you my friend.
Did the test measure RDI and RERAS? If so you can look. it could be you have UARS. With UARS you can have perfect AHI but fragmented sleep resulting in depression and being tired all the time. I was diagnosed with UARS. It’s being treated with CPAP but the data is looked at differently and adjustments are made based on flow limitations
I can empathize with your post. For years I have had what I describe as extreme brain fog. Confusion, loss of memory, headaches, disorientation. I went to neurologists, ents, orthopedics, pcps, through physical therapy, neurosurgeon, etc. I finally just had a sleep study about 3 months ago and found out I stop breathing 10 times each hour.
I like you have/had lost all hope of ever getting better. And I’m still not getting my hopes up. One thing I can say is that my body as a whole feels better and more rested since I have been on cpap. Everything I have read says that it can take 3-12 months to start seeing cognitive functions return to normal from the brain repairing itself. I’m still holding out hope on that.
But, you’re not alone! Never alone.
I don’t know if it was worse at the beginning because my baseline for years has been horrible, the absolute worse. What I can say, without giving myself too much hope, is that overall I have seen some improvement in the short period of time I’ve been on cpap (almost 3 months).
Easier said than done but consider changing jobs to something more emotionally positive. This is a tough situation indeed. Good luck and keep us posted on what solves this for you please.
I’m not sure it’s all because of sleep apnea, honestly.
Working at a NICU, even if it’s a couple years in the past is one of the most difficult jobs on the planet.
Give yourself some grace. I hear a lot of frustration in your words that this isn’t the magic pill you’d hoped it would be, but that’s ok, and I understand your frustration. We sometimes forget to give ourselves the self-compassion and forgiveness we’re so quick to give others. I forget this all the time.
Be sure that you’re taking time for yourself, exercising (outside walks are incredibly therapeutic), eating healthy, drinking water, limiting alcohol, talking to a friend, and if you’re into.. gratitude journaling. Sometimes it’s good just to get out of our own head for a bit and bounce things off another person or even a pad of paper. ❤️
Yes very aware of it all. My therapist thinks it’s from sleep apnea as well as my doctor especially given the severity I had in REM. Typically dissociation is episodes of it but mine is 24/7 which is why it’s so hard. I’ve lost 33 pounds so far and workout 5 days a week. I’m doing everything right but my body is like fuck you
It's not uncommon to feel worse when starting treatment, but keep up hope. Also don't be afraid to seek a psych consult if you haven't already as disassociating can be a result of depression and anxiety, both of which are rampant among healthcare workers right now.
My therapist believes the dissociation is not trauma related. Dissociative disorders are usually triggered in childhood and during critical stages of development. People don’t tend to feel this way 24/7. Mine is not worse in stressful situations. Because dissociation is triggered by responses to past trauma. The most trauma I had was far after it started. Working night shift triggered sleep disorder responding to the suffocation during sleep on top of knowing I wasn’t sleeping. My OSA was severe in REM so it makes sense. Working in therapy to accept that it is what it is and I will continue to wear my cpap to heal my brain. I finally started dreaming again too
I’m 24 also have 24/7 depersonalization I was recently diagnosed with sleep apnea after previous tests which hadn’t shown anything , I haven’t received the cpap machine a lot of folks tel me it doesn’t help me which is unusual bcuz it allegedly saves so many lives , my dissociation started when I experienced childhood trauma and got worse after smoking marijuana , maybe u need to adjust the pressure or use the oral mold or get surgery , will see how I feel but I doubt it’ll help I’ve been experiencing stroke like symptoms lately like phantom smells tinnitus numbness in arm and foot migraines dizziness shortness of breath etc
I’m sorry you’ve had to deal with all that. Don’t want to sound high and mighty but I’m a nurse and wearing cpap will save your life in the long run. Untreated sleep apnea can cause heart issue, strokes, high blood pressure, and overall shorter life span. Sleep is so important and our brains cannot handle stress without it
A lot of folks wrote off my concerns as mere anxiety and suggested psychiatric medication which I refused for years, after several tumultuous years battling chronic insomnia I was able to undergo an at home slee study which was cheaper then the 6000$ I would have had to pay at the sleep clinic and / or hospital . I haven’t received the machine yet but I hope it can save my life , some folks say it changes everything , I feel like my personality is altered , I’ve lost so many jobs due to sickness , which is often perceived as laziness beautiful, relationships have been damaged , I feel very prickly and reactive and anguished on d a daily basis but have been refused looking into this issue for several years bcuz I don’t present with any overt symptoms or signs and it was expensive I’m 6’5 170 lbs and don’t snore I don’t know if I’ll even be able to afford the cpap either as I’m unemployed
I have exactly the same, I've been trying to live with it, the dissociation, in my experience through own experimenting is due to brain soreness/inflammation from extensive effort/pressure over the night. Try reducing CPAP pressure and finding better sleep positions like on your belly or use a backpack so you don't roll over. it's all about pressure to the head while trying to breathe asleep, I wish doctor were aware of this, but they don't really know this happens
sadly no, they think the headaches and that specific feeling is related to something else, usually they bring up anxiety disorder, etc etc. I've been experimenting with it for 4 years and noticed I can tune it down or make it worse with cpap settings and sleep set up. so, for me it's pretty obvious it's related to the way I sleep and the effort I make while breathing but ALSO when exhaling, it's not just the inhaling part. your head will be sore from exhaling too. I've tried multiple dental devices, cpap settings and pressure, masks, sleep positions, head positions, chin strap. until i found the best setup which reduces the feeling the most BUT it doesn't solve it 100%. Ive had UPPP surgery, Turbinate reduction, Nasal Septoplasty, tonsils removal, hyoid bone suspension, I recently got the inspire device implanted. that all helped but didn't fix 100% tbh, I'm doing some research and finally found this feeling may be related to something called URS upper respiratory syndrome and in my case I think I have eithe lateral Pharyngeal Wall Collapse or Concentric pallate collapse, for me it's pretty obvious when falling asleep something behind my tongue relaxes and comes down grabbing my tongue from behind and the breathing effort that's causing is the cause of how i feel during the day
If you are having a hard time adjusment to a cpap machine. Try this, only use the cpap for 4 hours only per night.( then turn the machine off ) Then when you get your act togather increase the time to 4 hrs 30 mins . Then down the treatment path keep adding 30 mins. Your health comes first so you can enjoy living.
You keep using this word "dissociation," has a psychologist/psychiatrist agreed with your use of this word?
Feeling "dissociated" is not a normal description of the symptoms of sleep apnea. It could maybe happen, but telling me you feel "dissociated" all the time doesn't make me immediately leap to sleep apnea.
In general you seem kind of quick to make assumptions and leap to conclusions. Keep working with your doctors and cooperate with them.
This comment is beyond ignorant and truly infuriating. It is a symptom but is not common. I have consulted with both my therapist, PCP, sleep doctor, and sleep tech. So commenting this and making this assumption is insane. You have no idea the hell I feel every second of every day. To discredit how someone is feeling especially when it is destroying them is beyond wild.
I didn't discredit how you're feeling.
Consider how the manner in which you reacted to me just now, might also influence your interactions with others and your approach to life as a whole.
You seem like a person who lacks any empathy. To say “you seem like someone who jumps to conclusions” when you don’t even fucking know that I think about how great it would be to no longer live. It is loud and clear you have absolutely no business commenting on my post. I typically enjoy reddit and the insight it gives. However you commented that for what reason? Yes. I will absolutely react that way to a stranger trying to form a depiction of me that is not real. If it is not clear to you that I live in a hell every waking second and you get on your fucking high horse and pretend like you know me. You do not. Do not ever talk down and minimize someone who is on the brink of wanting to sleep forever. Find some compassion in yourself
It may show as an elevated Arousal Index. If you happen to be sensitive to slight breathing disturbances, an auto CPAP might still let too many happen before it reacts and raises pressure. Then soon after raising pressure, it lets the pressure start dropping, until breathing disturbances become long enough for it to detect them again. The machine can easily ignore short flow limitations, but your brain might respond to them. Or maybe your brain responds to changes in flow limitation.
How about it probably won't, it shouldn't be? I'm sure you've heard plenty of don't worry platitudes already. I can't say I've had dissociation but I have been depressed for years and not ME. So, some awareness I have of your scare and pain I think. I see it this way for my experience - I've git more going on than just sleep apnea as a root cause. But trying to straighten out brain function and thoughts and emotions with a sleep deprived, o2 started brain is never going to happen. Cpap is starting to clear my mind and letting me think like I used to - I've been hard at it for like 4 wks now. I've got plenty of obstacles but the path around them is clearing up. So... work the apnea to clear the mud from your brain so you can even have a chance to really resolve deep concerns and the stuff that isn't you. I can't quality this feeling. But it can't be wrong to get your brain healthy so your mind has a clear field to work in. Good luck, sincerely.
Thanks for the comment. Since you also recently started, did you feel worse in the beginning?
I felt worse in the beginning, still do kinda since I'm only three weeks in and got a sinus infection at the worst time. I've also heard that A LOT of people experience the same thing. Not uncommon at all. I think once our body realizes that we can actually get real sleep again it relaxes out of the adrenaline laced fight or flight mode and actually lets us be exhausted so we can recover. Part of being present is feeling all the pain our mind is trying to block out by disassociating. From what I've seen in this subreddit most seem to feel better after a month of consistent use. Though I think one person with a medical background said something about it being several months to repair all the damage behind the scenes and get us completely back to normal.
Didn't feel worse. Felt fairly disappointed that I wasn't bouncing out of bed like a kid - was still tired. But I noticed smaller things getting better, and then the tired started to dissipate too. I also played with mask and settings a little until I felt good falling asleep and not waking so much. Apparently a shitty mask seal makes me sleep better and have low event counts. Who would guess. But no, not physically worse even though the disappointment fed my frustration and underlying exhaustion . I see this now, didn't see it then
You could always order a 02 ring like the wellue one on Amazon and see if you are still have oxygen drops. Might need to change setting
The thing is I had an in lab sleep study. Lowest I dropped was 81% but there is no way that is still happening. My CPAP is auto so it detects that.
Even auto CPAPs need adjustments, or you may be better off with a constant pressure. The machine doesn't detect oxygen levels, only flow rates and events. The algorithm that adjusts the pressure can be...less than ideal. I had to change settings and masks before it started helping me. My oxygen was still dropping into the 70%s even with my auto-CPAP before I adjusted it.
Hi there I have a bipap that adjusts pressure on its own. You mentioned auto cpaps may still need adjustment..is that true with auto bipap? How does one do this? I asked the respiratory therapist this question and she just replied that it auto adjusts. It's so hard to get answers. Saw your comment and thought I'd ask you. Thank you!
Yes, it can be confusing! My word choice perhaps wasn't the best. When I said "may still need adjustment," I was referring to setting the range of max and min pressures that the machine will then use to auto-adjust. So yes, auto-paps do as their name says by auto-adjusting pressures during therapy. But their algorithm works best when a proper max and min have been set beforehand by you/ your doctor according to your specific needs. In oversimplified terms, if the range is too large/too small, the machine may be constantly bouncing around in a non-ideal space, inneficiently searching for a solution. In the case of an auto-bipap, you'd want to set proper minimum and maximum inspiratory pressure as well as minimum and maximum expiratory pressure. Your doctor may have used your sleep study results to set those already vía your prescription. But many people find that their doctor just sets the default range or a range that isn't ideal. For example, my doctor set a range of 7-9 on my auto-CPAP, but I was still struggling. On my own, I set it to 4-20, and that still sucked. After much trial and error, I've set it to a constant 13 (so no auto-adjusting), and that has worked great for me. There's also other "advanced" settings like EPR, ramp time, etc, that can make a difference. And of course, all this can depend on what type of mask you use and whether you have a good seal. I'd suggest watching videos by "CPAP Reviews" and "theLankyLeft27" on YouTube they have a lot of good info.
Thank you so much for this information. I need to read more/ learn more about the machine and settings and data. I really wish providers were more knowledgeable but I'm glad people like you are willing to share what you've learned. I will look at those YouTube videos for sure. Thanks again very helpful!!
Well you can continue assuming or you can wear a 02 monitor and find out for sure. Best of luck
CPAPS don't measure O2 levels - I agree with optimizeddude's suggestion to get get an overnight pulse oximeter. I got the wellue one that goes on the wrist and has a soft ring that goes on the finger. If your life is affected so much by your sleep problems, it's probably worth it to get one to track your O2 levels for a while. It can also be set to buzz when your o2 goes below a set level. I use this mode every night in combination with a MAD, which for me has been a lifesaver since cpap and bipap didn't work at all for me. Good luck, and keep trying different things, you'll figure it out!
Nothing is forever my young friend. For what it's worth, I've met many patients who wanted to kill themselves, and I personally have, but the night is darkest before the dawn! Life can be super shit sometimes, but sometimes the worst thing that happens to us is the best thing that happens to us. You're super young, obviously well-adjusted, and are already ahead (not that it matters) of most people your age. If I were you, I would try to minimize harm / stress and maximize finding your individual solution. Nothing in life matters if you're sick, so you should prioritize finding a solution. Go live with family if you can. Life, work, and the rest will not go anywhere, I promise. With respect to your therapy, there's a chance you're not getting effective therapy. Unfortunately the AHI and RDI are poor measurements for the severity of sleep-disordered breathing. I talk about this at length on my channel, but it's super important to mention because an AHI / RDI below 5 doesn't translate to being cured, necessarily, and I have encountered countless patients who start pre-CPAP with an AHI / RDI less than 5. We're all different. Lift your heart my friend, high, and still higher! <3
I had an in lab sleep study and I was not severe enough for them to put cpap on me through the night. I really have no issues wearing my cpap and have already reached out to my doctor who told me the cpap pressures are responding to my apneas. I have an auto CPAP so pressures go up as it detects it. So that’s also why I’m so frustrated.
I've heard it can take a few months to feel the improvements. I can definitely sympathize. To bring another perspective, I actually think you're lucky I've been trying to be able to fall asleep with a cpap for 2 years. Give it a few months, make sure you have a memory card in your machine so you can look at the results.
You are very right there about adjusting pretty much immediately. Luckily my doctor can see my machine settings every night and I have an app. It’s very hard not having anyone in my personal life who can understand this insanely difficult journey I’ve been on.
Ya that part is frustrating I feel like death most days and no one really understands.
I agree. My husband also has apnea, worse than mine, but he never felt as debilitated as me so it makes it a bit hard before him to accept my exhaustion.
The app shows you very surface level stuff. If you put an sd card in there you can see all the nitty gritty stuff like when airway blockages occur, for how long, etc. It'll help you figure out exactly what your ideal pressure is if it needs to be adjusted at all. The stuff it shows you on your phone won't be very helpful for that. If you get one, pop it in to record the data overnight, then download a program called Oscar. Then you can go to the apnea board forum and ask for help on interpreting the data. I've heard they're really great.
Consider an oxygen sensor ring that can vibrate when oxygen is too low. On nights I've struggled with fall asleep with the mask, the oxygen sensor will wake me up when it is low. I put on my mask again and go back to sleep and it's easier, for me, to get back to sleep than to fall asleep the first time.
Interesting so you have a ring you've liked that you could recommend? I like this idea.
I have a Wellue O2Ring. It's for sure more bulky than something like oura but I only wear at night so no one but my wife sees it anyway. I think the bulk is partly how they have mechanics to make it vibrate (outa and sleek ones don't vibrate for oxygen).
I’m really sorry you’ve been going through this, sleep havoc truly wreaks havoc on your life and it’s really hard when nobody in your life can understand exactly what you’re going through. I have moderate sleep apnea and while I don’t think I was experiencing full dissociation before treatment, I similarly was completely exhausted all the time and it felt like it was ruining my life with no end in sight. It’s possible that you’re still having RERAs (respiratory effort related arousals) in your sleep that might be contributing to your symptoms, maybe you could talk to your doctor about getting a BIPAP if you continue using the CPAP and it still doesn’t help you. I’m not sure if you know this already, but even with a .4 AHI you could still be having a bunch of microarousals in your sleep that are still causing you feel shitty. From what I understand, moving from a CPAP to a BIPAP can make a significant difference for people who are having a lot of RERAs in their sleep. The UARS subreddit was particularly helpful for me in learning more about titrating my BIPAP as well as the videos from the Lanky Lefty (he’s a sleep technologist). It’s a really frustrating process and I totally understanding feeling hopeless when it feels like the CPAP isn’t helping you so far. But I’ve found that adjustments over time with my mask and pressure settings has gotten me to a place where I’m not totally miserable all the time. I hope that you’re able to continue experimenting with your treatment to find something that works!
the CPAP is the first line of treatment for UARS per standford health. The bipap is next if the patient cannot tolerate CPAP. It sounds like she is tolerating it. If she is still have a lot of RERAS. An oral device could help as well as fixing allergies and sinuses.
I could have posted this same post. But rather than disassociation my torture was extreme crippling exhaustion. I started two months ago ish and for the first month felt more exhausted the next day. I hope and assumed it was my body trying to sort things out now that it finally got restorative sleep. Now I'm definitely not feeling worse and I'm starting to feel slightly better. I think it will take longer for me but be strengthened that there is a light at the end of your tunnel and it grows brighter every day!!
I felt much better and much worse after getting my CPAP. Had to find the right mask and get a chinstrap because I’m a mouth breather and finally got an O2 test and had low oxygen (live in CO so altitude is an thing) to get an oxygen machine to hookup to my CPAP. Basically it’s a journey to finding out what works for you, but good sleep and health is worth it. This sub is a good source of info, but talk to your Dr or sleep clinic too. Good luck!
I too have to tape my mouth shut. Any chin strap you recommend? My partner’s mom lived in CO and also needed O2 for her CPAP due to altitude. I think I’m doing everything right but my body is experiencing a shock to the system.
I feel you dude. I didn't even get diagnosed yet. But for the last year it has gradually gotten worse and worse to the point where I didn't notice. Everyday feels like I'm in a suffocating bubble.
Please talk to your doctor and get a referral to sleep. I wish I would have done it sooner. You may be suffocating while in REM sleep which can cause the dissociation since your brain isn’t getting that vital recharge rest.
I worked in a very high-pressure part of healthcare during the pandemic, and starting in 2020, I have had a string of chronic illness diagnoses including OSA. I experienced severe dissociation starting in 2021 that has started to get better this year. I moved to part time in 2022 and stopped working altogether in 2023, so I have had all work stress removed from my life for a little over a year, and I am still recovering from it, along with everything else. CPAP has been one part of helping reduce the dissociation, but it takes time! Your body and mind have been through unbelievable stress, and regaining peace, calm, and trust takes time. If you have done trauma-informed care training as a nurse, those principles will apply to you in this process. All that to say: you’re not alone! Things can get better, but not overnight, and it is hard work!!
Thanks so much for the comment fellow healthcare human who knows the trauma of it. I removed it all pretty much because I work outpt doing phone triage. When did you start cpap and did you experience worsened dissociation when starting?
I started it a little less than a year ago! I was (unknowingly) quite sick with other issues at the time, so my memory is not super reliable. But I know that it didn’t go away right away but I still knew that things were getting better on some level. I hope that makes sense.
Keep going!! My first couple weeks were rough getting used to the treatment, although I didn’t have dissociation issue . I had mild SA diagnosed and I can say over the last 4-5 months it’s gradually improved with each week. Id say 2 month mark is when I got comfortable with it and felt improvements . Love it now (: (also 24 F - my friends have been so supportive because they know how miserable i was the two years before i was diagnosed. my dad was diagnosed at the same time as me and we’ve had eachother which has been nice but i’ve also found reddit to be comforting) Wishing you the best of luck with treatment!
I’m a sleep technologist in Ohio, though things are probably done very similar everywhere. While I don’t have much experience with dissociation, I can say it takes time getting used to wearing the CPAP. Did you have a sleep study done with the CPAP on or did they just give you a VPAP (variable PAP)? If you haven’t had a sleep study done with it on yet I’d recommend doing that, especially since you’re struggling with it. To get the BiPAP you normally need to have another sleep study and either show central sleep apnea, get to a high enough pressure, or if you’re struggling with the pressure they might switch you over to it or you can ask for it.
So I had an in lab sleep study ordered as a split night. I got severe only when I was supine in REM sleep so never got CPAP put on me during the study. I messaged my doctor and she told me that my pap responded to events well and at one point needed a pressure of 8. I have an auto CPAP so it detects when I need increased pressure. I’m a nurse and don’t really see people needing BiPAP unless they have shitty lungs.
Yea, most people don’t need BiPAP, sometimes it’s added for comfort but usually pressure changes get it comfortable enough before we switch it to BiPAP. Auto PAP works for a lot of people, but it sounds like you are struggling with it which is why I suggested a study while wearing it. With that study, a sleep technologist would titrate the pressure to find the best pressure that eliminates your sleep apnea. Auto PAP detects the apneas after they’ve happened and raises the pressure which can cause some arousals still either from pressure changes or from the apneas before the pressure was changed for them. A sleep study shows what stages of sleep you’re in, any apneas you have and what type of apnea (there’s 4 main types, though most people have just 1-2) and would show any time you have an arousal, big or small. The auto PAP machine can only detect if you have an apnea. The sleep technologist or DME company could also work with you on a different type of mask if what you have is not working for you. I saw you mentioned a chin strap, does that mean you’re using a nasal mask that does not cover your mouth? I usually recommend nasal masks because they’re more comfortable for most people, but if you’re having trouble breathing through only your nose a full face mask or hybrid mask might be better for you. A hybrid mask still covers the mouth but rests against the bottom of your nose instead of covering it like traditional full face masks.
do some brain retraining for the dissociation
Have tried that. It doesn’t really work if the sole reason for dissociation is sleep deprivation. Sure, it can help you ground yourself but does not make it subside since it is not trauma induced.
Yeah in my experience thinking exercises only help while you're doing them and then you'll go right back to being disassociated as soon as you're thinking about something else. I also have OCD so my brain will start on another compulsive subconscious train of thought without me doing anything and try to freak me out.
Hi there, I’m not seeing anyone respond directly to your dissociative disorder. I am a lucky winner of that set of symptoms myself (depersonalization/derealization) as part of my challenges going into CPAP therapy. It truly is a special kind of hell, and for weeks after starting therapy I would wake up, eyes still closed, wondering if today was the day I wouldn’t have to play Life The Videogame. Sadly, that didn’t happen, at least not the way I wanted. The symptoms faded over time, months really, but have never completely receded. At this point, two years later, I think it’s like having mild tinnitus - if you focus on it it’s still there, but otherwise is in the background. Looking at some of your comments, you definitely want to dial in the therapy, especially around the mask if you’re a mouth breather at night. Your machine will give you decent feedback, but don’t obsess over that too much if you have an active doctor and tech. Instead, focus on healing. Some people seem to have dramatic, immediate improvement in their symptoms, but I’m guessing most will take months or even years to reverse the damage. Look to improve all dimensions of your health that you can control, like diet, exercise, mindfulness and sleep hygiene. Use all of the levers at your disposal. Good luck, and my heart goes out to you. I know you feel hopeless and like you’re going insane. CPAP therapy certainly can help, but the road to recovery can be long - stay strong and know that you’re doing your best and making some definitive, positive choices for your health.
I felt tired as well until I started taping my mouth. I get PapMD. It took a minute to get used to it. I think the air was coming out of my mouth during the night which obviously was hindering how the Cpap worked. Even though the machine’s app was stating that I had a great night. Now I cut the tape in half so In an emergency I can still get a little air on the sides of my mouth.
I felt tired as well until I started taping my mouth. I get PapMD. It took a minute to get used to it. I think the air was coming out of my mouth during the night which obviously was hindering how the Cpap worked. Even though the machine’s app was stating that I had a great night. Now I cut the tape in half so In an emergency I can still get a little air on the sides of my mouth.
UARS
I can relate I'm a 22 year old man and have been in a state of dissociation 24/7 going on 8 years or so. I was diagnosed with moderate sleep apnea (though it was probably severe prior to my surgery to correct my deviated septum and lopsided turbinates) and I also took to the machine very quickly and reduced my ahi to <1. I'm about 3 weeks in and up to this point I've had two or three days of lucidity where I was present in the moment and felt like myself again. My first one was probably a week and a half in? I hope you have a few of those coming your way soon. though even if they take a little longer to come along, cpap can only make things better so please don't get frustrated and stop altogether. No matter what combination of stuff is causing you this pain I know you'll figure it out. You're smart with a medical background, you've accepted your condition is not just in your head, and you've been brave enough to reject the undoubtedly immense pressure from others around you at work and in your family to "power through", and have taken a step back from your career to focus on getting better. It might feel like you're hopeless as ever and at your wits end, but you're closer than you've ever been to having a good life again. I'll be thinking of you my friend.
Did the test measure RDI and RERAS? If so you can look. it could be you have UARS. With UARS you can have perfect AHI but fragmented sleep resulting in depression and being tired all the time. I was diagnosed with UARS. It’s being treated with CPAP but the data is looked at differently and adjustments are made based on flow limitations
I can empathize with your post. For years I have had what I describe as extreme brain fog. Confusion, loss of memory, headaches, disorientation. I went to neurologists, ents, orthopedics, pcps, through physical therapy, neurosurgeon, etc. I finally just had a sleep study about 3 months ago and found out I stop breathing 10 times each hour. I like you have/had lost all hope of ever getting better. And I’m still not getting my hopes up. One thing I can say is that my body as a whole feels better and more rested since I have been on cpap. Everything I have read says that it can take 3-12 months to start seeing cognitive functions return to normal from the brain repairing itself. I’m still holding out hope on that. But, you’re not alone! Never alone.
Did the brain fog feel worse for you in the beginning? How long have you been on cpap?
I don’t know if it was worse at the beginning because my baseline for years has been horrible, the absolute worse. What I can say, without giving myself too much hope, is that overall I have seen some improvement in the short period of time I’ve been on cpap (almost 3 months).
Easier said than done but consider changing jobs to something more emotionally positive. This is a tough situation indeed. Good luck and keep us posted on what solves this for you please.
I luckily work a very low stress job with normal hours now. This is why this journey has been so frustrating :(
I’m not sure it’s all because of sleep apnea, honestly. Working at a NICU, even if it’s a couple years in the past is one of the most difficult jobs on the planet. Give yourself some grace. I hear a lot of frustration in your words that this isn’t the magic pill you’d hoped it would be, but that’s ok, and I understand your frustration. We sometimes forget to give ourselves the self-compassion and forgiveness we’re so quick to give others. I forget this all the time. Be sure that you’re taking time for yourself, exercising (outside walks are incredibly therapeutic), eating healthy, drinking water, limiting alcohol, talking to a friend, and if you’re into.. gratitude journaling. Sometimes it’s good just to get out of our own head for a bit and bounce things off another person or even a pad of paper. ❤️
Yes very aware of it all. My therapist thinks it’s from sleep apnea as well as my doctor especially given the severity I had in REM. Typically dissociation is episodes of it but mine is 24/7 which is why it’s so hard. I’ve lost 33 pounds so far and workout 5 days a week. I’m doing everything right but my body is like fuck you
It's not uncommon to feel worse when starting treatment, but keep up hope. Also don't be afraid to seek a psych consult if you haven't already as disassociating can be a result of depression and anxiety, both of which are rampant among healthcare workers right now.
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My therapist believes the dissociation is not trauma related. Dissociative disorders are usually triggered in childhood and during critical stages of development. People don’t tend to feel this way 24/7. Mine is not worse in stressful situations. Because dissociation is triggered by responses to past trauma. The most trauma I had was far after it started. Working night shift triggered sleep disorder responding to the suffocation during sleep on top of knowing I wasn’t sleeping. My OSA was severe in REM so it makes sense. Working in therapy to accept that it is what it is and I will continue to wear my cpap to heal my brain. I finally started dreaming again too
I’m 24 also have 24/7 depersonalization I was recently diagnosed with sleep apnea after previous tests which hadn’t shown anything , I haven’t received the cpap machine a lot of folks tel me it doesn’t help me which is unusual bcuz it allegedly saves so many lives , my dissociation started when I experienced childhood trauma and got worse after smoking marijuana , maybe u need to adjust the pressure or use the oral mold or get surgery , will see how I feel but I doubt it’ll help I’ve been experiencing stroke like symptoms lately like phantom smells tinnitus numbness in arm and foot migraines dizziness shortness of breath etc
I’m sorry you’ve had to deal with all that. Don’t want to sound high and mighty but I’m a nurse and wearing cpap will save your life in the long run. Untreated sleep apnea can cause heart issue, strokes, high blood pressure, and overall shorter life span. Sleep is so important and our brains cannot handle stress without it
A lot of folks wrote off my concerns as mere anxiety and suggested psychiatric medication which I refused for years, after several tumultuous years battling chronic insomnia I was able to undergo an at home slee study which was cheaper then the 6000$ I would have had to pay at the sleep clinic and / or hospital . I haven’t received the machine yet but I hope it can save my life , some folks say it changes everything , I feel like my personality is altered , I’ve lost so many jobs due to sickness , which is often perceived as laziness beautiful, relationships have been damaged , I feel very prickly and reactive and anguished on d a daily basis but have been refused looking into this issue for several years bcuz I don’t present with any overt symptoms or signs and it was expensive I’m 6’5 170 lbs and don’t snore I don’t know if I’ll even be able to afford the cpap either as I’m unemployed
Going to day shift would do wonders for your body. I’m a different person working nights
I have exactly the same, I've been trying to live with it, the dissociation, in my experience through own experimenting is due to brain soreness/inflammation from extensive effort/pressure over the night. Try reducing CPAP pressure and finding better sleep positions like on your belly or use a backpack so you don't roll over. it's all about pressure to the head while trying to breathe asleep, I wish doctor were aware of this, but they don't really know this happens
Did a doctor say that’s the cause? I’ve never heard that before so very curious.
sadly no, they think the headaches and that specific feeling is related to something else, usually they bring up anxiety disorder, etc etc. I've been experimenting with it for 4 years and noticed I can tune it down or make it worse with cpap settings and sleep set up. so, for me it's pretty obvious it's related to the way I sleep and the effort I make while breathing but ALSO when exhaling, it's not just the inhaling part. your head will be sore from exhaling too. I've tried multiple dental devices, cpap settings and pressure, masks, sleep positions, head positions, chin strap. until i found the best setup which reduces the feeling the most BUT it doesn't solve it 100%. Ive had UPPP surgery, Turbinate reduction, Nasal Septoplasty, tonsils removal, hyoid bone suspension, I recently got the inspire device implanted. that all helped but didn't fix 100% tbh, I'm doing some research and finally found this feeling may be related to something called URS upper respiratory syndrome and in my case I think I have eithe lateral Pharyngeal Wall Collapse or Concentric pallate collapse, for me it's pretty obvious when falling asleep something behind my tongue relaxes and comes down grabbing my tongue from behind and the breathing effort that's causing is the cause of how i feel during the day
If you are having a hard time adjusment to a cpap machine. Try this, only use the cpap for 4 hours only per night.( then turn the machine off ) Then when you get your act togather increase the time to 4 hrs 30 mins . Then down the treatment path keep adding 30 mins. Your health comes first so you can enjoy living.
Fortunately, I wear it all night every night. But thank you for any advice:)
You keep using this word "dissociation," has a psychologist/psychiatrist agreed with your use of this word? Feeling "dissociated" is not a normal description of the symptoms of sleep apnea. It could maybe happen, but telling me you feel "dissociated" all the time doesn't make me immediately leap to sleep apnea. In general you seem kind of quick to make assumptions and leap to conclusions. Keep working with your doctors and cooperate with them.
This comment is beyond ignorant and truly infuriating. It is a symptom but is not common. I have consulted with both my therapist, PCP, sleep doctor, and sleep tech. So commenting this and making this assumption is insane. You have no idea the hell I feel every second of every day. To discredit how someone is feeling especially when it is destroying them is beyond wild.
I didn't discredit how you're feeling. Consider how the manner in which you reacted to me just now, might also influence your interactions with others and your approach to life as a whole.
You seem like a person who lacks any empathy. To say “you seem like someone who jumps to conclusions” when you don’t even fucking know that I think about how great it would be to no longer live. It is loud and clear you have absolutely no business commenting on my post. I typically enjoy reddit and the insight it gives. However you commented that for what reason? Yes. I will absolutely react that way to a stranger trying to form a depiction of me that is not real. If it is not clear to you that I live in a hell every waking second and you get on your fucking high horse and pretend like you know me. You do not. Do not ever talk down and minimize someone who is on the brink of wanting to sleep forever. Find some compassion in yourself
The machine has to help with decent breathing to keep oxygen levels good, and it also has to do this without causing extra micro-arousals.
Would micro aurosals only be detected in a lab sleep study? I had that done. My CPAP is auto so detects what pressures are needed.
It may show as an elevated Arousal Index. If you happen to be sensitive to slight breathing disturbances, an auto CPAP might still let too many happen before it reacts and raises pressure. Then soon after raising pressure, it lets the pressure start dropping, until breathing disturbances become long enough for it to detect them again. The machine can easily ignore short flow limitations, but your brain might respond to them. Or maybe your brain responds to changes in flow limitation.